Clare's Journey

Cath is On

2012-01-31T15:10:00.002-05:00

After a stressful couple of weeks with illness in the house among various children (ear infections, coughs, colds, RSV, vomiting), we are finally in Boston and ready for Clare's cardiac catheterization tomorrow. We will not be 100% positive until tomorrow that the cath is actually happening, but we're ready to go.

With Violet and Eliza being sick the last week, we have been so careful in keeping Clare away from them, diligently washing hands, purell everywhere! We didn't want to take any chances with Clare coming down with an illness that would force us to postpone her cath. We thought we were doing good until Clare presented with a slight fever and runny nose over the weekend. I took her to the pediatrician's on Sunday and, sure enough, she had a double ear infection. I thought for sure the cath was off. But after a few days on antibiotics, Clare is definitely not feeling sick in any way (more energy than her exhausted mom, that's for sure!). The team at the hospital said an ear infection alone would not be cause for postponement, so we came on down to Children's Hospital today for her pre-op workup. After a long day of tests and labs and meeting with doctors and nurses, she is cleared for her cath tomorrow morning. One ear is still slightly red, and she does have a small cough, but as long as she is fever- and congestion-free tomorrow, she is good to go!

The plan during the cath is primarily to take a look around Clare's heart and see what's been going on in there over the last four years. The doctors are fairly sure she will need some stent and vessel dilations done while they are in there. The same interventional cardiologist (who is the cardiologist-in-chief here) personally does Clare's caths, so he knows her, knows her vasculature, knows Williams syndrome, and we know she is in the best hands. Depending on the extent of work done will determine what Clare's post-op plan is (one night or two nights in the hospital). We pray that all goes smoothly, and she is discharged on Thursday.

Clare was such a brave, patient girl during the six hours of pre-op today. The worst moment was when she needed her injections for the lung scan and the blood draw. Now we're resting at the hotel for the evening since we've all been up since before 5am. One of the good things about Clare being older is that she is the second case tomorrow which means we can be a little more leisurely in the morning before heading over to the hospital. Right now, her cath is set for 9:30am. Thank you everyone for your prayers!

Happy 9th Birthday, Jamie!

2012-01-30T14:51:00.000-05:00

Happy 9th Birthday, Jamie! You light up our lives in so many ways - from your infectious smile to your hard work and achievements in school and soccer to your love of jokes to your concentration and competitive nature playing games and sports to your consideration of your younger siblings and helping out Mom and Dad. We are so proud of the young man you have become! We love you!

Happy Birthday, Violet!

2012-01-21T14:05:00.001-05:00

Dear Violet,

Happy 3rd Birthday!

Over the past year, you have transformed from a toddler into a big girl.
From a crib to a bed.
From two-word phrases to conversations that have no end.
From diapers to Tinkerbell underwear.
From Mommy doing everything for you to assertions of independence and insistence on doing it all yourself.
From dancing in princess dresses in the living room to beginning ballet.
From being my baby to being the big sister.

We love you, Violet Grace! Happy Birthday to our big 3-year old girl!

The New Year Begins with a Bang

2012-01-17T22:51:00.000-05:00

We started out the New Year with a cardiology appointment. Clare has turned into such a great patient for these appointments. She lays quietly for her blood pressure readings, EKG, and echocardiogram and does everything the techs ask her to do. The boys were at school and Violet was at a friend's house, so Clare loved having the solo time with Mom, Dad, and baby Eliza.

The time has come for Clare to have another cardiac catheterization. I knew the cardiologist was going to utter those words (especially since she and the Boston cardiologist have been warning us of this for about a year now). The cardiologist could not get great readings from the echocardiogram as to exactly how Clare's pulmonary arteries and stents are functioning, so the safest route now is to obtain more accurate date by doing a cath. I do feel blessed that Clare has been able to go FOUR YEARS without a cardiac intervention, but I am also getting the butterflies. During the last cath, Clare went into atrial tachyarrhythmia and had to be cardioverted back to a normal rhythm. And the cath before that, she had a pulmonary stent replaced and ended up in the ICU. But I am a dweller on the positive (for the most part!). Clare is four years older and stronger. Her risk of dehydration and blood loss requiring a transfusion are lower. Her blood pressures have been great for over a year. All in all, she has been fairly healthy, so we are hopeful for a successful outcome to this cath, even if it does involve balloon dilations or additional stent placement.

The catheterization is set for February 1, so we'll be at Children's Hospital for a minimum of three days. Clare is starting to show some anxiety about the upcoming hospital stay. She has some memories of her hospital stay a year ago when she underwent dental surgery (such as she remembers the mask with the "sleepy medicine"), but has lots of questions and comments about "fixing her broken heart," as she puts it. We're already seeing that an older Clare will be a whole new experience at the hospital.

The Journey

2012-01-01T21:18:00.000-05:00

Happy New Year!

Being on the other side of the preparing-for-Christmas season (otherwise known as Advent), I finally have a chance to sit, catch my breath, and reflect on the last few weeks. We had a wonderful Christmas (celebrating over three days in three different states) and have enjoyed the last week simply hanging out at home enjoying each other's company (and, yes, the zillion Christmas presents the kids received). It has also been a prime time to finish Violet's potty training. Now I have to get her trained to wear pants again because we have been letting her run around in just her underwear all week. At least it was a success!

Advent is always part-joyful/part-stressful for me. Like most Christian parents, I struggle over that balance between the trappings of the outward exuberance and secular fanfare of Christmas and the inward joy and reflection of celebrating Christ's birth. I think Shawn and I did an okay job this year with the Advent season. I always believe we can do better (as in less parties, less pre-Christmas gratification, and less snapping at children because the cookies aren't turning out the way they should), but I also know we are leading our children down the right path when it comes to the true meaning of Christmas. The "Jesus stocking" was full of good deeds, the kids looked forward to the lighting of the Advent candles and the singing of carols and prayers each evening, and we gave of ourselves both in time and materials (singing at a nursing home, creating prayer cards to hand out, buying gifts for giving trees at school and church, donating food to the soup kitchen). Christmas is probably the #1 season of the year when I am so aware of the blessings in my life and all the goodness that God has given us as a family.

A week before Christmas, I accompanied Simon to his preschool Advent party. As we worked on crafts together, we found ourselves seated at a table with a particular classmate of his who has a . . . shall we say . . . overbearing mother. After nagging at her preschooler over his sloppy handling of the glue and foam angel wings, she snapped at him, "Oh, just let me do it." He then spent the next ten minutes fidgeting on his chair, staring off into space, and experimenting with how far he could bring his foot over his head while she focused intently on gluing each piece exactly perfect, straightening her son's photo on the ornament, then carefully applying glitter decoration. When completed, she exclaimed over her flawless ornament, "Now I can always remember this year at preschool!"

Following this incident, Simon and I took our "very obviously made by a 4-year-old" ornament and moved to another craft table, where we were seated with his main teacher. She was telling me how Simon told her about our upcoming Make-A-Wish trip, and she was interested in hearing more about Clare. I shared a bit, and we moved onto discussing Simon and his love of letters. I told her that Simon desperately wanted to learn how to read and has asked me frequently if I could teach him. And how I would love to teach him and would be so proud of him if he learned how to read at four years old, but that it would also not bother me or worry me whether he learned now or not. I ended with, "If there's one thing Clare has taught me, it's that children will do things when they're ready, and I just have to be there to support them and guide them in whatever way they need me to."

These two encounters back-to-back really got me thinking about how I live my life with my children. Am I always looking to what's next? What we've accomplished? Where we're going? I felt bad for that mom who had her perfect angel ornament which was really no reflection on what her child was like at four years old. I felt bad that she missed the point of doing the craft with your child, not for your child. We have learned so much in these past almost-nine years of parenthood. One of the things that Clare in particular has showed us is that the journey is just as important as the destination. Over the final weeks of Advent and Christmas, and now as we begin a new year, my Number One Resolution is to remember that - live the journey. Be there in the moment with the ups and downs. Focus on what I am doing right now in my life. What's going on in my home with my husband and children. What we are experiencing, whether it's good, bad, or in between. We'll get to our destination, some way or another. Live the journey.

Six Months of Sweetness

2011-12-14T21:34:00.001-05:00

Eliza is six months old today!

It has been a whirlwind of a six months, and I cannot believe my baby is halfway through her first year. Eliza is such a bundle of sweetness in our lives. I have had a couple "high-maintenance" babies, and Eliza is anything but. She is so mellow. She rarely cries, so when she does, we all sort of freak out! She is such an easy-going girl and goes along with whatever we have planned for our day. All babies are a blessing, but I admit I am glad to have a baby who is low-key at this phase in our life.

All the children are as infatuated with her as the day she was born. The boys fight over who gets to push Eliza's stroller up the hill when we pick Clare up from school. Simon and Clare ask first thing in the morning to sit and hold her. Jamie's favorite job is to put Eliza into her pajamas at bedtime (he even changes her diaper, if it's not dirty!). And Violet exclaims "Hello, baby!" when she sees Eliza.

It does not matter how many kids you have - it is always thrilling to watch them grow and achieve their milestones. Eliza is working very hard on sitting up for longer periods of time (I still hold out hope that she'll be sitting at Christmas), and I am eager to watch her over the next six months as she learns new skills.

Happy six-month birthday, Eliza Marie!

Looking Up

2011-12-05T20:22:00.003-05:00

Things are slowly getting back to normal in our house. Our kitchen is 100% functional again. There are some minor details we need the contractor to take care of (such as my kitchen sprayer hose only comes out about a foot), but I will not complain. I WILL NOT COMPLAIN! After being upside-down and inside-out for nine weeks, I WILL NOT COMPLAIN! Our basement playroom is almost there. I am still looking forward to the day when there are no more people in my house making messes, though! Hopefully in the next few days everything will get wrapped up, I will be able to unpack the boxes from my kitchen cabinets, and the contractors will move their tools and garbage out of the garage. (The contractors have been using my garage bay to store everything. For weeks it held our Corian countertop, side cabinets, and other items. I was using Shawn's bay for our van, but after last week's incident, I determined all would be better if I just parked the rental van in the driveway. It's a little tricky getting in and out of Shawn's bay with the van because of the curve of our retaining wall. However, after scraping ice off my parked-in-the-driveway car this morning and having to bundle everyone up just to walk to the car to drop Jamie off at school, I pushed - because it was all too big to lift - everything from my bay of the garage to Shawn's. I mean everything - bags of garbage, garbage cans, boxes, air scrubber, table saw, snowblower, humongous box holding our old dishwasher, everything. I was desperate! After one winter of having a garage, I am spoiled by it now.)

My van is still in the shop, and it hasn't even been started on yet. The big ice storm at Halloween put such a backlog on all the repair shops (at least this is the story they gave me!) that it will probably be another couple of weeks before we get our van back. This is irritating and inconvenient (our family of seven doesn't quite fit the greatest in our rental van, and I hope we don't have to make any of our Christmas trips in it), but this is a time where I feel like I have to swallow the pill I've been given without complaining because it was me who put us in this position.

Our house is decorated for Christmas - the tree is up, lights twinkling in and out, and we set up our New England village throughout the first floor. It is such a peaceful time at the end of the day to sit in the darkened living room and enjoy the beauty of the Christmas lights. It is one of my favorite things about the Advent season. Our shopping is done, so our evenings and weekends can be spent enjoying Christmas concerts, school parties, Jamie's futsal games (form of indoor soccer), our Advent wreath, outdoor Nativity walk, cookie swaps, Williams syndrome Christmas party, Make-A-Wish Christmas party (where the photo was taken - they had a fun photo booth Clare and I tried out), Clare's ballet recital, drinking eggnog, and driving around looking at lights.

And I finally met a kindred spirit at Clare's school! I have felt so much like I was on-the-sidelines for the year-plus Clare has been at her school. Never quite fitting in with the other parents because the path I walk with my child is so different from theirs. However, when you're standing around after school watching your children play on the school playground with an AED (which is another story for another day!) at your feet, you're bound to draw someone's attention. Which I did, and I am so glad for it!

Focus

2011-11-21T11:15:00.009-05:00

I ripped the slider door off my minivan this morning coming out of the garage. Yup, ripped it right off, throwing the van door back into the garage where Jamie, Simon, and Clare were standing, shattering the back window, and showering Violet with glass. Our guardian angels were definitely watching out for us this morning because the huge, heavy door landed about a foot away from the kids, and Violet was scared, but unharmed. We were running late, I was fuming at the bickering kids who were all very unhelpful this morning in getting out of the house on time (Shawn being away on business), and I (obviously!) misjudged my clearance pulling out of the garage with the sliding door still open. It was not a pretty sight.

Almost four hours post-incident, I am still irked at myself that it happened at all. I am NOT that kind of person - distracted, irrational, fly-by-the-seat-of-my-pants, making rash judgements. But I was that kind of person this morning, and now I have my mess to clean up for it. It really put my life at this moment in focus. We're in a crazy place right now with our life. (Wait, you have five kids - isn't it all crazy?) Actually, it's not always crazy. Like every family, we have our moments of chaos, meltdowns, temper tantrums, and toys everywhere. But we also have our structure, routine, priorities, and our focus on what's important. And that keeps us running smoothly. Usually.

We had a dishwasher leak eight weeks ago that led to a huge mold problem in our kitchen and basement. Since then, we've had remediation companies come in to clean the mold, our kitchen and half the basement playroom gutted, and now are on the tail end of everything being reconstructed. My kitchen is either packed away in boxes in the garage or in my dining room (which is where my stove, dishwasher, and fridge currently reside). We have nowhere to eat, I cannot access my mudroom or garage (which means dirty shoes in and out of the living room), and my house is filled with strangers making messes. When my house is in chaos, I am in chaos. I want things organized, in their place, and clean. And, right now, my house is anything but so I am anything but!

Add to that, I also feel as if we go through cycles when it comes to Clare and what's going on with her. Right now, there seems to be so much going on. We are dealing with issues with her kidneys, muscle pain in her legs and feet, exercises for her mouth because her tongue is weak, home stretching program, limiting certain items in her diet while adding increased fluids. And that doesn't even touch on what it takes to help her through her school assignments. In addition to the services she receives in school, she has three private therapies after school. So three days a week, I pick the kids up from school, and we all go to some sort of therapy and arrive home at dinnertime. Last year, Clare did her one private therapy in the early afternoon since she had morning kindergarten. I (naively) thought this year would be easier for so many reasons (two kids in full-day school, Simon in a preschool closer to home, two little ones that nap in the afternoon), but, in many ways, I feel as if we are on overload as a family. And I am at a loss what needs to be done about this. Clare needs her therapies. There are times when I wish we were doing more for her. As it is, there are so many different exercises, stretches, lessons I should be doing daily that sometimes don't get done. Where do we draw the line? I don't want to cut out things that she needs, but I have four other children and my sanity to think of. This morning's incident was a wake-up call that I am so much on overload most of the time, I am not making good decisions. I am not taking the time to process and think things through (such as let's pull out of the garage first with the sliding door open, then I will get Simon's car seat and put it in the car, then load up the kids). That didn't work out so well!

This morning's trauma also made me realize how blessed we are with such good friends. We do not live near any of our family, so I can't call my mom or sister to come help me out in a pinch. I have never been the type of person to have a wealth of friends (being slightly on the introverted side at times). There are limited amounts of people that I can ask for help. But, this morning, I saw that there is just enough. That God always provides. Simon, Clare, and Jamie each go to a different school, and three good friends were able to rearrange their schedules and put up with some inconvenience (like crying 2-year olds who didn't want to be in the car!) to pick up each of my children and bring them to and from school today. That made my day so much more manageable to deal with my mess with only the two little one who still nap.

As we approach Thanksgiving and enter the Advent season this weekend, my focus is on my family, preparing my heart for Jesus' birth, and the blessings in my life. I am going to try to let go of the craziness and busy-ness that has consumed me lately. Even though I do not have a kitchen, I do not have my car, and I have a lot on my mind when it comes to Clare, I want to focus on the three things that are truly important to our lives - faith, family, and friends. May this Advent season keep me in that spirit.

(So this is from Monday, but I couldn't get Blogger to publish until today!)

Make-A-Wish

2011-11-15T19:39:00.000-05:00
A few weeks ago, the Wish Granters from Make-A-Wish came to our home to meet Clare and talk to her about making a wish.

Make-A-Wish is something I have thought about on and off for a couple years. I was unsure whether Clare even qualified for Make-A-Wish, but, if she did, I wondered whether that was something we should nominate her for. Part of me felt like this was not right for us because Clare does not have cancer (which is what I am sure most people associate Make-A-Wish with, as I did), she is currently stable heart-wise, and I just didn't want to "take advantage of the system." Then we heard about WS-friends of ours getting ready to have their wish fulfilled and others being nominated for Make-A-Wish. The little voice in my head would wonder again about it. Then her cardiologist told us that Clare needs another catheterization in the next few months. Then the nephrologist diagnosed her with calcifications in her kidneys and hypercalcemia, and we discussed other scary topics such as renal failure. And over the past several months, Clare has been suffering pain in her lower legs and feet. So we've been doing x-rays, visits with the orthopedic surgeon, private physical therapy, and fittings for foot orthotics. If any child deserves having a wish granted, I truly believe Clare is one of those children.

Clare was nominated, she met all the qualifications, and the Wish Granters paid us a visit. Clare was eager for their visit and knew immediately what her wish would be. Ahead of time, they informed us that they would need some back-up wishes in case they could not fulfill Clare's top wish, so we did talk to Clare about it.

Top three wishes:
1 - To meet a princess.
2 - To meet Jesus.
3 - To visit Planet Earth.

The Wish Granters assured us that they will be granting Wish #1! A trip to Disney for our entire family is now in the works. It was very important to Clare that she goes on her trip when she can go swimming, so we won't be going to Orlando until sometime next spring. But we're obviously all so excited. For a couple years now, Shawn and I have wanted to take Clare to Disney to see a "real" princess (and give that experience to all our children), but we just have not been able to do it financially. It is still surreal that we will actually be going and seeing our princess' wish fulfilled.

Eliza at Four Months Old

2011-10-24T19:43:00.004-04:00

Eliza is now four months old! She really is the easiest baby I've ever had. (Finally got it figured out by Number Five!) She is very mellow, rarely cries (so when she does, everyone goes on super-alert), and sleeps like a champ at night. She has the same big blue eyes as her older sister Violet, but her hair is darker like Clare's. At her four-month pediatrician appointment, she weighed over 15 pounds - more than what Clare weighed at a year old - and Eliza has all the delicious rolls to prove it. We all are so in love with our sweet baby girl!

Under Our Belt

2011-10-04T12:13:00.001-04:00
We now have one month of school under our belt. Jamie is enjoying third grade so far, although the amount of homework has increased, which is an adjustment for all involved. I am definitely of the opinion that school and homework come first, but I admit it is tough to squeeze it in on those days we are also juggling one of Clare's after-school therapies and Jamie's evening soccer practices. There are a couple days during the week where homework is done somewhere other than home! But Jamie is an avid student and a hard worker. He landed a speaking role in the school play (Pinocchio), and Shawn is going to help out with some set-building this year.

Simon started at a new preschool this year. It is a school that is closer to home, and he entered school knowing two children (from our church) in his class. So he is very happy with the change and loves his school. Simon would go to school every day if he could! One day a week, he stays at school for a full-day and has such a great time. He asks me every morning if this is the day he "gets to eat lunch at school." I know most young kids love school (it's only when they get older that starts to wane!), but I always loved school. (Yes, even high school.) I hope my children always love school, too. There will be good days and bad days, but I want them to always wake up eager to see what the day will bring.

Clare has taken to her new school schedule better than we expected. There are days she is tired, and, by the end of the week, she is exhausted, but we all are! But there has only been one day where she came home exhausted to the point of almost not being able to function, and that was on fire drill day. She was so set off from the fire drill all day that both her kindergarten and first grade teachers told me it was a "rough day." Other than that, Clare has adapted very well to going to school all day. She loves eating lunch at school and now orders hot lunch a few times a month, which is even more exciting to her! So exciting that she ordered it on a day she was not supposed to because I knew she would not like it and I had packed her a lunch. She ended up not eating lunch at all because she didn't bring her lunchbox to the cafeteria and didn't like the hot lunch. (Told you so!) Now we have a simple note-system worked out with her aide, so Clare only orders hot lunch on the days I can guarantee she will eat it. But she loves eating with her friends and her favorite part of the school day is that she often gets two recesses (one in the morning with kindergarten and then the after-lunch recess with first grade). The best of both worlds!

Clare had her nephrology follow-up last week - kidney ultrasound and visit with the pediatric nephrologist. The calcifications in her kidneys looked the same (not increased, which is good). The nephrologist is still hopeful that Clare's kidneys will grow without the calcifications growing, so she will eventually have more good tissue than bad tissue. We continue to monitor her calcium and sodium intake, but now are under orders to increase her water consumption to 2 liters (or 60 ounces) a day! That is a lot to get into a 6-year old who does not drink very often. Her recent calcium levels in her urine were high as well, so we are prepping for some follow-up tests (including a 24-hour urine study) to determine whether Clare needs to go on medication as well. The doctor again stressed the importance of water, water, water to filter through those kidneys. Clare's aide in school has been great in getting Clare to drink more water at school (and patient with the increased bathroom trips), and we have upped our efforts at home, too. Hopefully we'll see some improvement in her numbers when she has her 24-hour study done.
Our last appointment on the checklist is orthopedics next month. Then we're set (hopefully) until her next nail-biting cardiology work-up (in which we will discuss scheduling her cath). We have some other exciting things in the works for Clare (such as planning another trip to Kentucky to see Dr. Mervis in February). I know it's going to be a great school year!

Fashionista

2011-09-17T12:30:00.000-04:00
Violet is a mystery to me. At the ripe old age of 2 1/2, she loves to accessorize. And this girl can accessorize! I am not an accessory girl (quite the opposite!). I wouldn't call myself a tomboy exactly, but I don't like dressing up or wearing make-up or jewelry. We went to a pool party last month, and took Violet from her nap directly into the car. After the 40-minute drive to the party, when I went to get Violet out of the car, she was wearing a pearl necklace, pearl bracelet, and a crown. I am not sure where she had those stashed in the car, but she was ready for the party. It took a little convincing that pearls were not exactly swimwear!

From the time Violet could walk (and have free access to the house), she has adorned herself with baubles and bling. She wants to wear a dress or skirt every day (calls it her "princess"). I think we'll be in trouble the day she discovers make-up! (Or Clare introduces Violet to it.) In the age-old debate of nature versus nurture, Violet is proof that little girls are made this way. I certainly did not teach her this or model this behavior! Violet loves her little bit of glamor, and I love seeing what she comes up with next.

One Day Down, 179 To Go

2011-09-03T20:43:00.003-04:00
Clare had her first day of school yesterday. The day before, we went to the playground at Clare's school with friends. The teachers were busy getting their classrooms ready. While we were there, Clare's special education teacher from last year saw us sitting by the playground, so she came over. She shared with me the news that she was no longer the special education teacher for the school, but had her own second grade classroom instead. I was a little shocked. (This doesn't warrant a phone call over the summer to introduce us to the new special ed teacher? Apparently not.) So now the night before Clare begins school, I am worried that the new special ed teacher does not know Clare, does not know the IEP, does not know what is going on. And this is another big year for Clare since she is doing a transition year - morning kindergarten and afternoon first grade. Add in lunch, new IEP goals, and a new schedule. A schedule developed just for Clare, a rare occurrence in the school, and not something that will necessarily go smoothly in the beginning since there are so many people involved. And now a new special education teacher? So I was a little freaking out (to put it mildly).

That afternoon, I took Clare to her first grade orientation. I had 30 minutes in which I planned to meet her first grade teacher, chat with the new special education teacher, introduce myself to the new nurse (yet another new person on Clare's team since the old school nurse transferred), walk Clare through the lunchtime routine, and get information on the pick-up procedure. We met her new first grade teacher (super nice, very young, and enthusiastic), Clare saw some of her former classmates, and that was it. The 30 minutes were done, orientation was over, and we had to leave to pick up Jamie from school. So now I was a little more than just freaking out.

Clare, on the other hand, was counting down the days to her first day of school, especially since Jamie had started school the previous week. She was so excited the night before school started (and cried when we left her orientation because she wanted to stay). We packed her new pink backpack, planned her snack and lunch menu (and went over again and again that snack was for snack and lunch for lunch and never the two shall meet!), and gathered all her school supplies. She helped lay out her clothes for the morning, and Clare was ready. I am so grateful that Clare did not seem to have half the trepidation that I had about this new school year. I believe she was a little nervous when we first arrived at orientation because she wanted to hold my hand the whole time (not something she usually wants to do in a crowd - she usually wants to be out socializing, especially since she saw lots of friends). But she quickly overcame her nervousness once she saw her first grade classroom and got to sit at a desk. And now that the night before school starting was finally here, Clare was a bundle of eagerness for it all to begin.

Clare woke up at 5am (and I convinced her to lay down in the guest room for another hour before I was functional). Jamie did not have school yesterday, so the entire family was able to bring Clare to school. The joy on her sweet face was contagious. She just could not wait. Before school started, we were able to meet the new special education teacher, which eased a lot of my anxiety. We found out that Clare will have the same aide all day. I still want to meet with the nurse, but we're planning on setting up a team meeting in a couple weeks to review what's working and what's not. Even though we've been over the plan with Clare multiple times, I think she was a little confused that she was lining up with kindergarten again (especially since she saw her friends from last year going somewhere else), but she had a big hug for her kindergarten teacher. She waved eagerly at us from the line, and off she went.

The rest of our day was chock-full (it is always good to keep busy on days like this!). Simon had his preschool orientation that morning as well. I left Violet with Shawn (who was working from home), and took Simon to his school, along with Jamie and Eliza. Simon went home from orientation with a friend, so Jamie, Eliza, and I went out to lunch. I never get to go out with just Jamie (and Eliza slept the whole time, so she was a quiet third wheel), and we had a great time together. Then we came home, played Clue, woke Violet up from her nap, and it was time to pick up Clare.

The nerves came back walking up the sidewalk to the pick-up area. I know it was silly because what was done was done, but I just wanted my girl to have had a great first day. She had been looking forward to this day for weeks. Her class was one of the last classes out of the building, so after what seemed like forever, we finally saw the class. Clare was so tiny next to her classmates, and she did look tired. But she had a big smile on her face when she saw us, and we were greeted with huge hugs. We lingered to talk with the first grade teacher while Clare and her siblings went on the playground. Miss R said Clare had a fantastic day. She came into the first grade during circle time and transitioned beautifully, sitting down quietly and joining right in. Lunch went well, and Clare loved going to the library in the afternoon (which was the first grade special that day). Clare told us all about the library ("I even went to the bathroom in the library!"), but that was the extent of the information we got out of her. She was tired (and had a little cry when we told her it was time to leave the playground), but not the meltdown, non-functioning exhaustion like I had prepared myself for. She enjoyed seeing her brothers and sisters again ("I missed you, Jamie!" she proclaimed). Once Simon came home from his friend's house, Clare helped Shawn make pizzas and we had a pizza-movie family night.

So the first day went better than I expected. I will never be satisfied with the amount of information that Clare is able to impart to us, but I know she had a good day, her teachers were enthusiastic about her day, and Clare was disappointed when she woke up this morning to find out it was Saturday. I pray next week is just as wonderful!

Back to School

2011-08-30T21:12:00.002-04:00
My favorite time of year - fall! (Oh, and back to school!)

I have enjoyed the laziness of (most) summer mornings and all that we have crammed into eight short weeks. But I always look forward to getting into our routine again. And I will say it - having a break from the frequent chaos, sibling bickering, and craziness. With the school schedule, we have a predictable pattern of frantic mornings, calmer mid-mornings, quiet early afternoons, and then back to a loud, boisterous household for the late afternoon/evening. I like the predictable. I like the routine. I like the calm before the storm!

Jamie started the third grade last week at his Catholic school. Clare has her first day of her transition kindergarten/first grade year on Friday, and Simon starts at his new preschool next Wednesday. So we are slowly being eased into our school routine. Which is good for me because with a new baby, I am still figuring out how to be showered and dressed by 9am, never mind getting five children dressed, feeding them breakfast, and packing lunch boxes and backpacks! (And before he starts huffing and puffing - yes, Shawn, does a lot of the morning grunt work as well.)

In most families, back to school means going out for new school clothes, buying school supplies, and getting haircuts. We did get some new uniforms for Jamie (but that's so easy that I passed along Jamie's sizes to a friend who was already going to the uniform store that I didn't actually have to shop!). We did buy some school supplies. No haircuts, though (we like them buzzed). In our family, back to school also means I try to fit in all the doctor's appointments for Clare that I can. So far, she's gone to the endocrinologist, cardiologist, and dentist. I have her new schedule for private speech therapy and hippotherapy lined up. She has upcoming appointments scheduled with nephrology and orthopedics. Nothing shocking or unexpected from these appointments so far, but I feel better having them behind us so we can focus on Clare's academic needs.

I am taking Clare to her orientation on Thursday for first grade. (They go over pick-ups, drop-offs, navigating the lunch room, and I start freaking out.) We went over to the school today to find out which first grade classroom she is assigned to, and we were able to see who her classmates were. Then she and Simon played on the school playground for a few minutes. Clare was thrilled to show Simon "her" playground, and she cannot wait for school to start. She asks me every morning if she has school today. She is excited about having her kindergarten teacher again. She is eager to bring "shells and cheddar" (her favorite all-time food) in her new thermos container for lunch. I know Clare cannot wait for Friday to come. I will be glad when Friday is successfully over! I cannot believe Clare will be in full-day school. Where has the time gone?

The World of Simon

2011-08-25T09:13:00.006-04:00
With the advent of Facebook, it is so easy for me to simply post the cute, funny sayings that go on in this house on Facebook when, in the past, I would collect them for the blog. There are so many blog readers who are not on Facebook, though. And I would hate for you to miss the little joys in my life!

Like my sweet, precocious, four-year old Simon. He has always been extremely verbal and super-smart (for example, he knew all his letters and numbers, both in recitation and recognition, before the age of two). I never know what's going to come out of his mouth, and there are so many daily occurrences where he cracks me up. So here are some quotes direct from the World of Simon:

Simon: We are going downstairs to play secret spy.
Me: Okay, see you later, alligator.
Simon: You don't need to call me alligator.
Me: Sorry - I thought that was your spy code name. [trying to be funny]
Simon: [in all seriousness] No, my code name is Sparkles.

Simon: Jamie told me when you kiss a girl, that's how you get a baby. I just kissed Eliza and I kissed you, so maybe I'll get a baby.
Me: That's not exactly how it happens. You won't get a baby from kissing Eliza.
Simon: Oh, you're right. Jamie said you have to kiss a girl you don't know. [Gotta love older brothers and their wisdom!]

Simon [checking every stall in the girls' bathroom]: "Awwww, man, where are the urinals?!?!"

Cardiology Merry-Go-Round

2011-07-31T19:40:00.003-04:00
Once again, we have a new pediatric cardiologist for Clare. This is our fourth cardiologist in six years. We loved #1 (who we met when Clare was barely 24 hours old), but she moved to Virginia. #2 was nice personally, but really disappointed us professionally. #3 was incredible personally and professionally, but having Clare's primary cardio in Boston did not end up working for our family and Clare's various medical needs. So we're on #4. We switched back to Children's Hospital at Dartmouth, but went with a new doctor practicing there.

We met Dr. G for the first time at Clare's six-month visit on Friday - EKG, echo, and examination. Dr. G is young, vibrant, thorough, and wonderful with Clare. A good fit for us so far. Her office is literally seven minutes from our house, we know from experience that we can pop in for a quick peek or blood pressure check if the occasion arises, and she practices in the same larger group as Clare's pediatrician, endocrinologist, and nephrologist, so they have access to each other's notes and Clare's medical records. That all works for us, so I pray that Dr. G works out! We've never really been that picky or unhappy with any of our providers, so it's been weird to feel as if we have not really had a cardiologist on board over the past two years.

Clare's visit went as well as expected. She remains clinically stable, which is the good news. Her gradients remain about the same, and her blood vessels are growing, but still not at a great rate (this is not unexpected with the severity of Clare's stenosis). The echo could not get a really good view of the pulmonary stents, so it's unknown how they're holding up. (Four years ago, one of Clare's stents was actually crushed in her artery and the echo did not pick that up. The doctors found out when they were in there during a cath.) Her ascending aorta and arch continues to look fabulous (this is the portion that was surgically repaired six years ago). Her descending aorta continues to also look stenosis-free. Her EKG was solid, and based on that, her coronary arteries seem to be good as well. Her blood pressures were fabulous, so she can continue off any hypertension meds. We have been monitoring her weekly for over a year now off meds, and the pressures are usually very good for Clare's condition. Her pulses were good, and all-in-all, a wonderful examination.

However... (and here it is, the not-so-good news)... Dr. G agrees with the previous cardiologist's assessment that Clare should undergo a cardiac catheterization in the near future. Prior to Clare's appointment, Dr. G had already spoken with Dr. B, the liaison cardiologist in Boston (Dr. B is a different cardio than the one we had been seeing as a primary in Boston, and he has been involved with Clare's case since her first catheterization at three months old - Dr. B is our cardiologist whenever Clare is inpatient at Children's - I know, it gets confusing!), and she reviewed the Boston echos on paper (Shawn is going to get her a digital copy of the actual echo video). Since it has been an amazing four years since Clare last underwent a cath, all agree that it is time to look at what's going on inside her vessels, other than just doing echos. Right now, the plan is to do another full work-up with Dr. G here in Manchester in six months, then schedule the cath a few weeks after that.

Dr. G cannot say right now what the plan will be during the cath, but we have been through this six times before and are quite familiar with the nature of this beast. I am 99.9% sure that Clare will have her pulmonary stents and smaller pulmonary vessels dilated. At the very least, the doctors will shoot a lot of dye and take a lot of pictures! They will be able to get better views on how her stents are holding up, what her coronary arteries look like, and maybe even exactly what her renal arteries look like (we've had those scanned recently, but a cath is always more accurate). So we'll hold tight for six months and take it from there.

Baby Blues

2011-07-27T20:41:00.002-04:00
Eliza turned six weeks old yesterday. Unbelievable! I feel as if we are finally settled into some sort of pattern in our day. Eliza sleeps in her cradle, wakes 2-3 times at night to eat and goes right back to sleep, and is more alert during the day. She will sleep in the car seat and is a great passenger, but hates the bouncy seat and swing - so much so that I put the swing away completely and only put her in the bouncy seat for 20 minutes for my morning toilette. She usually naps in the playpen instead. In those first couple weeks, I never thought we would get there (I always feel this way at first - must be those hormones!). Part of me loves having the baby in bed with me, but the part that wakes up with a sore neck and back from falling asleep while nursing the baby is not so fond of it. But here we are, six weeks later, with a baby who predictably will spend the night in her cradle, and is "easy" enough overnight that Shawn at least gets a full night's sleep. (I am not bitter - this works in my favor for sleeping longer in the morning and letting him start the mad breakfast rush with the older children.)

Our bedtime is not as predictable, though. Right now, my sweet husband is doing his nightly duty of baby rocking since I have declared a nursing freeze for the next hour. Eliza will struggle to fall asleep for hours at night. Once she is down for the night, it's golden. But getting her there is frustrating. She fusses, needs constant position changes, wants to nurse, nurse, nurse until I want to scream, scream, scream. Shawn and I alternate between me nursing and him rocking. Some nights, we do this for a few hours. And, again, I know we will get there (since I have four older children currently asleep!), but the getting there part is so hard sometimes. This time with our tiny baby is so short and I don't want to wish it away. But it would be nice to get a little more sleep!

Summer School

2011-07-17T19:50:00.004-04:00
Clare is starting her third week of summer school, and she is loving the routine again. However, the first day was rough, to say the least. This summer, we chose to have Clare take the bus both to and from school. I knew that would be easier on me this summer rather than getting five kids out of the house every morning at 8am. Plus Clare loved riding the bus when she was in preschool. So I thought this was a great plan! It didn't work out as planned that first day.

Clare came off the bus crying. First, she arrived home 45 minutes after school ended, and we literally live two minutes from the school, so she was overheated from being on the un-air-conditioned bus for that long. Second, she thought her beloved kindergarten teacher was going to be her teacher for summer school (because we had told her that Mrs. D would be her teacher again next year, and Clare has a hard time with distinctions, so to her mind, this was next year), so it was a big let-down to have someone completely new. Third, her IEP states she is not allowed to be outside on the playground in heat and humidity, and as it was a 80+ degree day, her teacher kept her in the classroom while the rest of the class went outside. (Clare claims she sat and did nothing during this period, which I doubted.) And, fourth, not only was the bus hot, but Clare didn't understand why it was taking so long to get home, so she was worried that the bus driver was lost. Apparently, she kept repeating this and saying she just wanted to go home, and the bus driver "yelled" at her to stop crying.

Of course, all this sent me into a panic, and my first instinct was, That's it, Clare does not really need to go to summer school does she? My second instinct was, No, she DOES need summer school, she needs the routine, but I will just drive her to and from school each day. Shawn reminded me that Clare had a rough night's sleep and was up super-early in the morning (being excited about school), so she was exhausted to begin with, and he convinced me that Clare needed to try again and that we would get to the bottom of all this.

Clare and I had a pep talk the following morning that she would give the bus another try. She cheerily boarded the little bus, and I waited anxiously as the hours passed. Meanwhile, Shawn contacted the bus company and spoke to them to find out what happened on the ride home. It was a lot of sorting out the best route to get the multiple children home, and the bus did not even leave the school until 15 minutes past dismissal. I spoke with the driver personally when she dropped Clare off (it's a different driver coming and going). She did have a loud voice, but seemed very sweet and friendly with Clare. She also had horrible directions from the school to our house, so I gave her the most direct route (and now it takes ten minutes from school dismissal to when Clare arrives at our driveway). After school, Shawn spoke with Clare's summer school teacher about the playground. He gave permission for Clare to play on the playground as long as she's only out there for a brief period of time (and it's not over 90 degrees). The teacher explained that Clare stayed inside to blow bubbles and was able to choose a friend to stay inside with her. We knew Clare's view of the day would be slightly skewed (she still has trouble with storytelling), but it did make me feel better that, although Clare perceived the situation to be terrible, neither the bus driver nor her teacher did anything I could fault them for.

When these situations occur, my mother bear kicks in (more so with Clare than the other kids), and I have to remember not to make rash decisions based on my initial gut reaction. Such as foregoing summer school all together based on the first day. Day two and on have gone great, and Clare is enjoying school.

Transition

2011-07-11T17:33:00.000-04:00
The transition of "bringing baby home" is always a little rough. Our transition with Eliza has been MUCH smoother than with Violet, due to the easier delivery (not necessarily easier labor, but the VBAC recovery was SOOOO much better than the C-section recovery!). But the transition is an adjustment period whether it's baby #2 or #10. I forget how "spoiled" I was by having only children who could walk, talk, feed, and entertain themselves (for the most part). A newborn forces me to let the laundry slide, leave the living room messy at the end of the day, and plan simple meals (or forego the planning and just wing it with whatever is in the pantry).

The Type A part of my personality has a very hard time adjusting to this "slide" with each new baby. The crumbs under the dining room table are mocking me. The to-do list I made on June 11 (as in the day before my water broke) still sits on the counter just begging to be tackled. And I want to do stuff with my kids this summer - much of which cannot be done with a baby.

But then I remember that this phase of our life - Eliza's newborn-ness - is so very short. I do not know if I will ever have another newborn (I think I've said that four times - HA!), and I want to cherish every moment. And that means cherish the moments even if our days are spent hanging in the backyard with the kiddie pools and freeze pops instead of going to the beach or hang gliding or whatever other silly thing I imagine we could be doing in those moments of resentment at our "boring" summer. Cherish what it is and let go of what it is not.

(And, of course, it took me two weeks to actually finish this post, and Eliza is almost one month old. My time on the computer, scrapbooking, grocery shopping is very limited right now! On the other hand, I do a lot of sitting on the couch while nursing Eliza, so I have finished some really great books!)

Photos Finally!

2011-06-25T19:46:00.000-04:00
(As usual, I am bad at formatting these!)

It's A Girl!

2011-06-14T08:01:00.005-04:00
Eliza Marie was born at 1:01am this morning. She weighed 7 lbs, 13 oz and measured 20" long (my second biggest baby!).

Trying for the VBAC was a rough road, but I am so blessed to have an amazingly patient and loving husband and a terrific OB staff, both nurses and doctors. My water broke at 9:30pm Sunday night, and I really thought labor would take off and we would have a baby about 10-12 hours later. Ha! Shows that, even after four previous (all very different) deliveries, I still haven't learned that every baby comes into the world at their pace. And Eliza was no different! By 10pm Monday night (over 24 hours since my water broke), I was in a lot of pain from intense contractions, but still only at 4 cm dilated (imagine my extreme disappointment - understatement of the year). Over those L-O-N-G 24 hours, I was so ready too many times to throw in the towel and just get it done with a C-section. But Shawn was there through every painful contraction encouraging me that I could do it and that the pain on this end was worth the recovery on the other side.

I had three different OBs from my practice throughout the labor process and each one was awesome. They were all committed 100% to this VBAC, and not one of them rushed me or brought up having a C-section. You could see the wheels spinning with my final OB (who delivered Eliza) who was actively working on solving the "problem" of getting my labor to take off. Around 12:45am, labor was even more intense, so my OB wanted to just take a peek. I geared myself up mentally that I would only be another couple centimeters dilated. I was in shock when she announced it was time to have a baby. I was prepped, I peeked at the clock (12:59am), and Eliza Marie was born two minutes later at 1:01am. Twenty-four hours to get from 1 to 4 cm and then less than 3 hours to go from 4 to 10 cm! There is no predicting what will happen in labor!

Eliza is beautiful, nursing great, has a full head of dark hair like her siblings did at birth, and looks a little like a mix of Simon and Violet (and her cousin Finlay!). She squawks a little bit, nurses, and goes back to sleep. I am exhausted (five hours of sleep total over the last 50 hours), but I also feel great. I am so thankful we remained committed to the VBAC because this recovery is definitely worth those last 27.5 hours!

(Pictures to follow as soon as I get them uploaded on the computer!)

Today's the Day

2011-06-13T06:10:00.003-04:00
Today is Birth Day! I cannot believe it is finally here. My water broke last night at home at 9:30pm. Since I am positive for Group B strep (bacteria that I could pass along to the baby), I had to come right into the hospital and start on IV antibiotics. The good news is that I was able to get two doses in already (they prefer to have at least two on board prior to delivering). The bad news is that I am not in any good contraction pattern, so after nine hours in the hospital and one hour of sleep, I still have not really made any progress. The doctor is going to start Pitocin in a couple hours (once the shift change is complete), then we should be off to the races. Prayers for a successful and safe birth (no C-section please)!

Clare's IEP and The Plan

2011-06-03T19:25:00.001-04:00
This morning we had Clare's IEP meeting for next year. As eager as I was to add some new goals to her IEP (especially goals related to a sensory diet, social skills, and self-advocacy skills - see how much we have learned over the past year??), I was more eager to finalize The Plan for next year.

Everything went smoothly. There were a few minor details we ironed out, but we are very happy with the IEP for next year and approve The Plan. As it stands, Clare will repeat half-day morning kindergarten with the same teacher and curriculum. Everyone agrees this will be such a benefit to Clare. She entered kindergarten last fall with almost zero knowledge of letters and numbers so she really struggled and made little progress in the first half of the year. Clare blossomed in the second half of the year, though. Now she will re-enter knowing a good majority of her letters (still struggling with numbers), so we hope she will continue to make great progress. Clare has done great achieving her OT, PT, and speech goals, so the new goals for next year are in line with where she needs to be. Once the kindergarten day is done, Clare will join the first grade class for their lunch and recess, then in the afternoon, be in a first grade class for math (with a modified curriculum) and specials (gym, music, art, science - areas where she does not need a modified curriculum). When she needs pull-outs for resource room and therapies, the team is going to try to work her schedule (and theirs) so she has less pull-outs during the kindergarten day and will receive her extras during transition times or a specials time. This year, out of an 11-hour kindergarten week, she was pulled out 3 hours for services. That's a huge chunk of time away from the curriculum!

Walking away from the meeting, I kept thinking how blessed we were with our little elementary school. It's been a learning process over this past year for Shawn and I, and we have spent hours doing what we could on our end to help Clare in getting all we can for her when it comes to school, but her team has been excellent. The special education teacher made a comment in the meeting about how she thinks they "really know Clare now" and "know her needs." And I have to agree 100%. Many of the items on our priority list were addressed by the team and included in the IEP before Shawn and I brought them up. The school guidance counselor is a new member of the team this year, and she had already come up with ways to address social skills and self-advocacy skills. The speech therapist wants to switch Clare from group speech to individual speech, feeling Clare will benefit more from the one-on-one time (we have been advocating for this change for three years now when developing IEPs with the preschool). Despite budget cuts and other uncertainties regarding the upcoming school year, the team was insistent that Clare will have a paraprofessional, no services have been cut from her IEP (in fact, she has increased services), and that they are doing everything they can on their end to help Clare succeed.

One piece of "sad" news that her teacher shared with us recently is that the other girls in the class have matured past Clare in the way they play and interact. We knew this would happen (we have seen it already happening with family friends and their children's interactions with Clare), but it's still a tough pill to swallow. Clare has been invited to a classmate's birthday party next week, and I am having such bad mommy-indecision about it. Although I think everyone in the class genuinely likes Clare, I don't think any of them are particularly her friends. When I observe her on the playground or running around with the kids after school, no one really interacts with her. I am so grateful for the fact that she is still pretty much oblivious to these nuances and just has a great time doing what she wants to do. But when we went to a birthday party back in September, Clare was definitely left out of the action (and I actually started to cry at the party and I was not even pregnant!!). Now these little girls have been together for the entire school year and have formed their bonds and cliques that Clare is not a part of. I just don't know how much my 9-month pregnant-hormonal-emotional self can stand to watch. Then I always get the anxiety of what is Clare going to eat (it's a "luncheon" party right after school), how will she act in a stranger's house, what will she get into, will there be any outbursts to deal with? Clare knows about the party, so if Shawn can swing his schedule around to watch the little ones, I know I will end up taking her. This is one of those tough moments where I have to swallow my own anxiety and reluctance and just be there for Clare in whatever capacity she needs me.

Toddler Quirks

2011-05-29T10:28:00.000-04:00
Violet is an enigma. Although she babbles all the time, she is only now starting to put complete sentences together at 28 months old, and those are fairly limited in terms of vocabulary. So when she plays by herself and babbles, I have no clue what's going on in that little head of hers.

Two mornings a week, when Simon is at preschool, Violet has the house to herself. I usually employ this window of time to get some chores done since Violet (generally) loves having the run of the house and the toys. I love to hear her "talking" to herself while I clean or fold laundry. This morning of the photos (before the week of rain hit us), she was going back and forth between the four open windows in the living room and dining room. I am not sure what exactly she was doing, but after about 20 minutes, she moved on to another activity. Then I saw all the open windows and the creatures she had left there. I think they were guarding the house for me. I left them there all day because they were so cute and it reminds me of the little unknown joys that children bring.

Violet also has a fondness for having a container of "stuff." Usually little baby dolls from the dollhouse, Littlest Pet Shop animals (her favorite being the tiny birds, which she calls "tweet tweet"), and other sundry odds and ends. Usually, she steals Clare's ballet purse or some other purse to carry her loot in. But on this day, I found her walking around with her prized possessions in a cage. Slightly odd, but very endearing. Sometimes I share the sentiment that life would be easier if I could just put all my little darlings in a cage!

Boys V. Girls

2011-05-27T19:59:00.000-04:00
Since we do not know the sex of this baby, we have had many queries about if we "think" we know what we're having. And, of course, the answer is NO! How could we possibly predict that?? But the debate rages on.

Last week, one of the neighborhood boys was playing on our swing set. He is 5 years old with an older brother. He asked me what the baby's name was, and I told him I did not know because we didn't know if we were having a boy or girl. His response was: "Oh, you're having a boy. You have a lot of girls already!" I thought it was cute that to him (only having a brother), two girls was "a lot of girls." I didn't point out that we also had two boys since apparently this was not a lot of boys to him! Then this morning, Simon told me the baby was a boy because "we already have a girl baby... Violet! We don't want two girl babies!" So maybe the baby is a boy??

Weirdly enough, I do not have pregnancy dreams. I have not dreamt of labor, delivery, or whether the baby is a boy or girl. These days (or nights rather), I don't think I am asleep for long enough stretches to even have dreams! And just when I thought we were settled on names, it turns out we are not. Our boy's name is decided (right, Shawn?) but we're still throwing out girl potentials. Nothing has grabbed us and screamed THIS IS IT! I felt like with each of the older four children, as soon as I heard what is now their name, I knew that was the perfect name. I just don't have that feeling this time when it comes to a girl's name. So my prediction is that this baby is a girl and will not have a name until we see her!

Today marks 37 weeks, and we are all so eager for this pregnancy to end and meet Baby #5!! This is the latest in the "summer" I have been pregnant and have the cankles to prove it.

Embraceable

2011-05-19T19:13:00.002-04:00
Embraceable

A film about Williams syndrome.... the trailer alone made me cry.

You have to check it out.

The Personality

2011-05-14T14:49:00.000-04:00
"Cocktail Personality" - One of the first phrases we heard six years ago to describe individuals with Williams syndrome.

Even the Wikipedia definition of Williams syndrome contains this statement: "Most individuals with Williams syndrome are highly verbal and overly sociable, having what has been described as a "cocktail party" type personality, and exhibit a remarkable blend of cognitive strengths and weaknesses."

In the past few months, Clare's "cocktail personality" has really been coming out full force. She talks to EVERYONE everywhere. She loves to say "hi" to every person she encounters. But she just does not say hi. She likes to add something personal, such as "Hi, guy!" or "Hi, lady!" Recently, at Jamie's soccer practice, she passed one of Jamie's teammates - a boy who has pretty long hair for an 8-year old boy. Clare brightly chirped, "Hi, girl!" as she waved and walked by. That prompted our discussion about how saying hello is okay, but we can leave it at that. If we do not know the person or do not know their name, we can just say "hi." Nothing else needed to be added. It's weird the conversations you have with your children and the rules you have in place that you never dreamed you would need.

I love that Clare is friendly and outgoing. That she smiles at everyone and wants to brighten people's days. That she enjoys striking up conversations with just about anyone. But I admit there are many times I cringe knowing what's ahead, the scenarios I can see coming - such as standing in line behind the woman with purple spikes at the OB's office ("I like your purple hair!") or passing the overly-made up woman at the grocery store ("I love to wear make-up like that!") or her new favorite is telling the entire world that her mom is going to have a baby. (At least she doesn't try to pull up my shirt to SHOW everyone like Violet does!) These days, we are receiving ample opportunity to talk about boundaries, personal space, and appropriate conversation.

More Photos!

2011-05-12T10:25:00.000-04:00

Clare's 6-year photos and Simon's 4-year photos. Once again, I love that the photos completely capture their individual personalities!

Clare was quite the ham for her "photo shoot," and I ended up with about 20 amazing pictures. Very hard to narrow it down! Simon was being goofy and didn't want to take any direction, but the photographer was amazingly patient and able to capture some great shots. I am very pleased with my new wall hangings!

Photos Photos

2011-05-06T09:12:00.008-04:00
I brought Jamie and Violet to have their professional photos taken a couple months ago around their birthdays, and today I am taking Clare and Simon, so I wanted to share them. (I will share Clare's and Simon's once I have them.)

The last time I took the three older children to have photos done was two years ago. (I did do Violet's at one year old.) With the age of digital photography, we have thousands of photos - and thousands of REALLY good photos. So I let myself skip a year last year. But I still love the professional shots to decorate our walls. I love photos of my children and family and would rather see those around my house than any other decoration. I regret not taking Jamie, Clare, and Simon last year, although it gave me a chance to enjoy their beautiful 6-, 4-, and 2-year old photos for two years!

I debated attempting the group shot today, but being 34 weeks pregnant and having no clue what to put them in to coordinate, I am wimping out on that. Plus if I wait 6-7 months, I can get one with all five children (and maybe even a family portrait, since Simon was 11 months old the last time we did that!). But these are Violet's stunning 2-year photos and Jamie's awesome 8-year photos. I love that they totally capture each child's unique personality.

Choices

2011-05-04T18:47:00.000-04:00
We recently made a decision in our life. Nothing earth-shattering or even something that in a few years we will really think about. But, in the moment, this decision was eating me up for some reason. To me, it's all about leaving the comfort and security of a place I know well, people I truly like, and a situation I am used to, familiar with. To begin again in a new place with new people, but one that will be easier for us logistically and financially and hopefully make our life slightly simpler.

There are always choices to be made as a parent. And I struggle constantly with whether or not I am making the right choices. Some of these choices are so tiny in the grand scheme of life. I remember how much I agonized eighteen months ago about putting Clare on the bus to school. I went back and forth in my mind, with Shawn, in my mind again. We ended up letting Clare ride the bus to school because it truly was what worked out best for our family at that time, and it turned out to be a non-issue. In fact, Clare loved every minute of it. Then there are the huge decisions to be made when it comes to our children's health, particularly Clare's. In some ways, though, those decisions are easier to make because you weigh your child's life against the risk of a procedure or other medical decision. And your child's life wins every time.

When I attended my Moms' Day Away, we talked both in our large group and small group about cutting out the extras from our life. Those little things we do or traps we fall into that really make our life more complicated than it has to be. Does my child have to play two sports plus learn to play an instrument? Do I have to empty all the hampers every day or will the earth continue on its rotation if I let the laundry pile up a bit? Do I have to be president of the PTO or even attend every meeting or is it okay to simply be one of the parents who bakes for the teacher's luncheon once a year? As our family grows in size and busy-ness, I am slowly coming to peace with the fact that I cannot do all I want to do. I cannot be everything I want to be. And I think I am okay with that. Because it makes me less stressed and a happier wife and mother. Which makes my husband and kids happier. Which makes life so much sweeter!

Happy 4th Birthday, Simon!

2011-05-01T14:43:00.001-04:00
Happy Birthday to our spunky, goofy, cuddly, new four-year old Simon Joseph! It has been an awesome year watching you grow in leaps and bounds. You have become a great playmate to all your siblings. You love playing with Violet in the mornings, and I often find myself with two crazy kids concocting all kinds of interesting schemes! You enjoy the afternoons with Clare, playing computer or board games. Once Jamie comes home from school, the two of you will hole up in your bedroom with Legos or Bionicles. But your favorite activity is snuggling with me on the couch reading I-Spy books. You cannot get enough of them and can find the hidden items quicker than Mom can. I love that I have a buddy to eat carrots and hummus with, since none of the other kids will touch them! Your love of learning, activity books, mazes, and games is insatiable, and I hope you always have that love of using your mind like that. You are such a joy to us, Simon, and we love you so much! Happy Birthday!

The Kiddos, Part 2

2011-04-14T20:40:00.005-04:00
Simon has one month left of his first year of preschool. On the whole, it has been a good year, and he has enjoyed going to school. After much deliberation, we made the difficult choice to not reutrn to the same preschool next year. The beloved 4-year old teacher is leaving after so many years at the school, and she was really the incentive behind my willingness to stick it out for another year (it's a bit of a drive). We toured a Christian preschool closer to home that some of our friends' children attend and have decided to make the switch. Simon seems to accept this decision without any complaint. Although he likes preschool, he has not made any "best" friends there and does not seem particularly attached to the school. I am sad to say goodbye forever to the school becasue Jamie did have such a great experience at this school, yet at the same time, I am not sad to say goodbye to the drive and the craziness it adds to our schedule. I am all about simplicity (especially with a new baby on the way!).

Violet has had a rough six weeks with illness. We were all sick with a cold at the end of February. However, Simon, Violet, and I could not shake the cough and congestion. Both Simon and Violet ended up with ear infections, and I came down with bronchitis. By the time I brought Violet in, her ears were so infected (as in pus bubbles ready to pop! ewwww... gross!), that the goop was coming out of her eyes because there was nowhere else to go. So the doctor started Violet on a course of augmentum before things got worse. Unfortunately, we now know that Violet shares her dad's and older brother's amoxicillin allergy. She ended up in hives from head to toe. As soon as I saw them, I knew instantly what they were from (having dealt with the same thing with Jamie when he was two). Since Violet was on day eight of the antibiotic when she broke out in hives, the doctor felt it was okay to not prescribe a different antibiotic, but absolutely stop the augmentum. Two days later, Violet's hives became worse, her breathing was slightly labored, and her face was starting to swell, so it was off to ER. She still had a double ear infection, so after some monitoring and oral steroids in the ER, we were sent home with prescriptions for more steroids, bendaryl, pepcid (apparently an antihistamine as well) and zithromax (another antibiotic). A week later, we followed up with the pediatrician again. Violet STILL had a double ear infection. And she still had the horrible rash from the allergic reaction. I think she was more miserable from the rash than the ear infection. She needed benadryl at night to go to sleep because she was scratching herself until she bled. Not to mention that antibiotics cause diarrhea, so now I was pumping her full of probiotics as well, and we had to add a medicated diaper cream to the mix. So now Violet was put on omnicef, a third antibiotic. Unfortunately for Violet once again, there is some cross-sensitivity and 10% of people allergic to amoxicillin/penicillin are also allergic to the class of drugs that omnicef is in. Violet's reaction was not as severe to the omnicef, but her rash worsened. She completed her course of medication, suffered through the rash, slept on lots of benadryl, and I think we're in the clear now! Everyone has been healthy for a couple weeks now. (Oh, I better not have just ruined anything!)

We are all looking forward to spring, Easter, Simon's birthday, and Jamie's First Communion!

The Kiddos, Part 1

2011-04-13T20:20:00.007-04:00
There are times when I feel guilty about just updating about Clare. Yes, the title of the blog is Clare's Journey and the ups and downs associated with Williams syndrome is a big part of our life, but the blog is really more about our family and whatever else is on my mind, so I always feel the mom-pressure of dividing the blog attention evenly. So here goes!

Winter indoor soccer is a wrap, and now we have moved on to spring travel soccer. I love that Jamie has found a sport he truly loves and is skilled at, yet it is always an adjustment to everyone's schedule to have soccer three times a week. His first practice was last night, and, since Shawn is away this week, it was a late night getting everyone into bed, so we all paid for it today! (Extra grumpies all around.) In school, Jamie is busy doing the school play again this year. I am not sure how thrilled Jamie is that they are performing Cinderella this year (he is one of the mice), but he enjoys doing the play, and I hope he continues loving the theater like his parents do. Shawn and I talk hopefully that, in the future, we can be involved in a community theatre together. It definitely brings back memories of our college days!

Spring allergies are having an impact on Jamie and his migraines. Even though he still receives monthly allergy shots, when the allergens start to emerge full-force, Jamie still reacts to it. Last weekend, we knew allergy season had officially started because Jamie fell asleep before dinner on Saturday evening, and, on Sunday, I went into his bedroom in the mid-afternoon to find him sound asleep on his floor! So I knew his allergies were knocking him out. We added a daily dose of Zyrtec to his schedule to get him through the next couple of weeks. I hate seeing him suffer like this. I never feel like it's "fair" that an eight-year old struggles to just get out of bed some mornings. In my mind, he should bounce out of bed full of energy every day. Save the struggle for when he's old like his mom!

Clare is done with all her educational testing between the Boston WS Clinic, visit with Dr. Mervis, and her three-year evaluation in the school district. We have a meeting with her school next week to discuss the results, amend her IEP a bit, and maybe chat about next year. Clare will have her official IEP meeting in June where we will formalize the plans for next year. She continues to love kindergarten and is making progress. Recognizing letters, counting, the concept of rhyme, letter sounds, and forming letters and shape is still slow, but I don't want to inundate her with constantly making her "work" on her letters. There was a period a couple months ago when Clare did not want to go to school. She would cry when we worked on the alphabet and even referred to herself as "stupid." The psychologist in Boston picked up on her frustration in this area as well, so we have backed off at home. Dr. Mervis recommended the Handwriting Without Tears program, which we have not started yet, but I also wanted to explore options for Clare that were fun. Not just sitting at the table and drilling it into her. Which led us to hippotherapy, another suggestion from Dr. Mervis and one we have considered on and off over the past few years.

Clare started hippotherapy three weeks ago and is using it as a form of occupational therapy. Stating that Clare loves riding the horse is a huge understatement. She tells me often that she misses Nori (the horse she rides), and I have to wait until lunchtime the day of hippotherapy to let her know that we are going or it's nonstop asking when are we leaving. While riding, Clare works on skills such as dressing, hand-eye coordination, drawing and writing, some vision therapy, and general core stability and trunk strengthening. It is a workout for Clare. I don't think she could ride for longer than the 30-minute session, but she loves every second of it and is always sad to say goodbye to Nori. The OT has recommended we also take Clare to see an opthamologist who runs a vision therapy specialty practice (coincidentally the same opthamologist that Clare's early intervention OT recommended when she was about a year old). Clare does have some tracking and visual scanning issues, which the OT has really been able to see when Clare is riding (her eyes lose focus when the horse turns a corner - almost like the eye muscles cannot keep up). The OT warned that this can lead to some problems with scanning when Clare learns how to read. I feel that just as we are starting to get something under control, something else pops up! But, then again, this is also a problem we have heard about throughout the years, so perhaps we should have done something earlier about it.

Sometimes I get caught up in the frustration of the educational process and forget to take note of what Clare is doing in her everyday life. When I think about it, she really has accomplished so much over the past few months. She rides her tricycle nonstop now without any help. She is like a little speed demon on it. She does not seem to mind that other kids her age are riding bikes. She enjoys the freedom and independence of being able to get on and off the trike by herself and go. Another small victory (but also huge) is that she is independent 95% of the time in the bathroom now. This is such a success because, again, it is another assertion of her independence and self-help skills. She no longer regularly announces that she has to go - she just goes. Shawn installed a bar on the wall for her so she can get on and off the toilet by herself. The only thing I help her with is buttoning her button if she is wearing jeans! She can undress herself now. She still needs help getting dressed (it's hard to maintain balance while pulling pants on - I have trouble with it!), but can pull her socks on now and often can put her shoes on, too. When I get discouraged, I remember where Clare was six months ago and can definitely see the progress!

Hello, Spring!

2011-04-13T19:32:00.005-04:00
I think spring is here. I know the rain is here. And travel soccer, growing tulips, window washing, ballet recitals, play practices, and I am in my third trimester!

I hit the 30-week mark last week in my pregnancy. Shawn and I decided not to find out the sex of the baby for the first time. We figured Baby #5 was a good time to do something different! With two boys and two girls already, we refer to this baby as our "tiebreaker." We have finally settled on our names (I think?). I really should not complain about my pregnancy because I am a low-risk preggo mama to begin with, but I have definitely entered the stage of infinite heartburn, back pain, swollen ankles (thank goodness flip-flop weather is around the corner), and insomnia. I am pretty sure the remaining 10-12 weeks will fly by, though, since the long drag of winter is over.

Two weeks ago, I attended a Moms' Day Away hosted by Faith and Family, a magazine and blog dedicated to Catholic living. I have been a fan and subscriber of the magazine for years and reader of some of the blogger moms for just as long. It was such a treat to not only get ten continuous hours away from the nitty-gritty of being the mom but to spend the time with two friends, meet some of the women who have inspired and strengthened my vocation as a mother over the years, and enjoy a day of prayer, reflection, laughter, and food I did not prepare or cook. That one day focused on my motherhood reinforced for me that this is where I belong. Even on these nights when I am exhausted from three days of solo parenting, battled three of my four children to get into bed (who are more exhausted than I am, and I realize this is the source of their turning into little hellions), and feel like my chest is on fire from heartburn and my back hurts so bad I wish a pregnant woman could take ibuprofen or vicodin, I am still exactly where God wants me to be. I hold onto those thoughts, feelings, and reflections and thank God that I am so blessed to know where I am supposed to be in life. That I am not "lost" or "searching." I still have lots of work to do on my vocation as a Catholic wife and mother, but I know I am going in the right direction.

So I wanted to update on all the children, but it's time to end.... the heartburn sends me over the edge most nights. I never get heartburn in every day life, just in my third-trimester pregnancy life. Nothing soothes it really. The only "cure" is to go to bed and, when I awake, enjoy my six heartburn-free hours before it rears its fiery head again after lunch. Although a bowl of cereal does take some of the sting away. Which is where I am headed.

Happy 6th Birthday, Clare!

2011-03-31T14:47:00.003-04:00
Six years ago today, we were waiting and waiting for our first baby girl to arrive. You were already nine days overdue. The Easter outfit I purchased for you sat waiting in the nursery (and was now deemed your Baptism outfit instead) since you did not arrive by Easter (which was five days past your due date). I was big, tired, cranky, and all done wiith being pregnant. We scheduled an induction with my OB for this date, but I just knew you would arrive before then. Well... you did not.

As we checked into labor and delivery at 7:30am, the nurse informed us that we should have received a phone call postponing the induction since the L&D floor was full. I almost lost it then. There was no way I was going back home. My baby was coming out TODAY! Once the nurse realized I was nine days overdue, they set me up in a teensy curtained area in pre-op. There was barely any room for Shawn to sit never mind the four anxious grandparents milling around. I refused to let my OB break my water in that little space, but the Pitocin was started, and the induction officially began. What a crazy day! (As if any labor and delivery is not crazy!) Things went slowly, I finally was transferred to a real room with a real door that closes and a real bed. I kept making progress, but slowly. I was at 7cm for what seemed like days and days and days. But I kept telling everyone that she was coming. I knew she was coming. At 8:30pm, my dad had to leave to catch a plane for a business trip, and both the nurse and OB told him this baby was not coming before midnight. So he left. But I knew she was coming. They kept checking me and telling me I was only at 7cm and not to push. I was on no pain medication, and I just knew she was coming. Those were the words I kept saying over and over. "She's coming, she's coming, she's coming!" The last time, those words were screamed at the top of my lungs. My OB was down the hall, and (she tells me after the fact), she said, "That's my patient!" and ran in. Sure enough, you were coming. When you were ready to come, you didn't care that I was not fully dilated, that no one else was prepared for you to be delivered (except your mother!). 8:52pm and Clare Therese was born!

I fell in love that day with my first baby girl. The nurses could not get your temperature up even under warmer lights, so I begged to hold you skin-to-skin and nurse you. We cuddled under the blankets, you latched on as if you had been nursing forever, and your temperature shot right up. The world was a perfect place, and we were on Cloud Nine. For about 16 hours.

When I think back, I wish I could hold on to those 16 hours of ignorant bliss forever. When our two-year old son came to the hospital the following morning to meet his baby sister. When I thought over and over what a perfect little family of four we had become. When I could not believe I had been so blessed with a gorgeous son and daughter. When all was right in my little world, and I felt so much at peace.

Then we heard the words "she has a heart murmur." And bigger, scarier words were thrown around - pediatric cardiologist, echocardiogram, pulmonary valve stenosis, congestive heart failure, sudden death. Over the next few days, then weeks, our entire world was turned upside down by what is now an everyday part of our life - Williams syndrome and congenital heart defects.

But there is a happy ending. Because we have you, Clare Bear. We have had your beautiful, loving, joyful person in our lives for six years now. I would walk this road all over again. How could I wish it otherwise when it would mean I would not have you? I love you so much, my sweet girl. Happy Birthday!

Hockey Girl

2011-03-16T17:26:00.003-04:00

I love that I can walk into any room in my house at any given time, and I never know what I might find. Today I found Violet geared up playing hockey! (She did this all by herself with Jamie's pretend hockey stuff.) Priceless! This is definitely one of the joys of motherhood.

Fighting Everything

2011-03-02T13:01:00.002-05:00
Clare is 100% recovered from her surgery and anesthesia. Well, may 95% recovered because she still has the rash from the allergic reaction, but it does not seem to be bothering her anymore, so it's hopefully on its way out. I am taking her to our NH dentist on Friday for a quick follow-up. Still waiting to hear back from the allergist about their thoughts. They were going to "round table" Clare this week, but we know how the waiting game is played.

Meanwhile, spring has been teasing us with little thaws and warm-ish days, but then we got hit with two smaller snowstorms over the weekend. I believe I can speak for almost everyone in New Hampshire that we are ready for winter to be over. This winter has been a nightmare for illnesses. I don't think one day has gone by this entire January, February, and now March when at least one person in our house has not been sick. We have battled colds, coughs, stomach bugs, infections, all kinds of yuckies. Right now, Simon and Violet both have ear infections and are on antibiotics, and I am heading down that path. They started as regular colds that are settling in for the long haul. Simon is halfway into his course, so he is feeling a lot better (and we feared he was developing pneumonia again, so we were relieved to hear it was "just" an ear infection). Violet was diagnosed with a double ear infection and conjunctivitis just last night, so she is still pretty miserable. My OB instructed me to see my PCP, so I have an appointment today. I am praying that the doctor will see the wisdom in putting me on some antibiotics as well. I very rarely take any prescription medication at all and have been running an off-and-on fever, so I am hoping that for the sake of the baby (and the miserable mom), they will prescribe something.

We are surviving with lots of rest, television, and cough drops. Blah....

Quick Update

2011-02-25T13:00:00.002-05:00
Clare is home from the hospital. The surgery went well, and the dentists were able to save her tooth. She had a bunch of work done and is doing well mouth-wise. However, she is having a reaction to the anesthesia (which happened after her last surgery in July 2009 as well). Nothing major, just uncomfortable. I was fortunate to get an appointment with the allergist yesterday evening, so now we are going to work on finding out what exactly sets Clare off. Since she is due for a cath within the next year, the cardiologists want us to get to the bottom of this before she goes under anesthesia again.

One more procedure behind us. Thank you for all the prayers!

Flying In, Driving Out

2011-02-22T20:16:00.003-05:00
I am waiting for Shawn and Clare to return home from their trip to Louisville, Kentucky to see Dr. Mervis. Being that they have a layover in Philadelphia, their flight (of course) is delayed, so I am still waiting for their arrival at home! (No insult to my peeps in Philly, but the airport stinks.)

Dr. Mervis was kind enough to let me conference call in on her chat with Shawn this morning, so I got to hear firsthand the scoop on Clare. Overall, she is doing well and actually scored in the average range as compared to typical children in her verbal and nonverbal reasoning skills (which means she scored quite well as compared to other children with Williams syndrome). When it comes to her spatial skills, however, not so good. Which we expected, knowing Clare as we do. She also is having more trouble than is typical for kids with WS with some language skills. The fact that she is having trouble comes as no surprise since we, her private speech therapist, and her team at school have all noticed that there are some challenges when it comes to language development with Clare. However, it was a surprise to us that this is NOT typical in WS and that Clare is behind in these skills when compared to other children with WS. Definitely something to work on, keep an eye on, and be sure the school knows that it cannot be blown off "just because she has WS." (Not that the school is overlooking it right now, just something to keep in mind when discussing Clare's progress at our next team meeting.) The actual term for Clare's problem is "specific language impairment." Unfortunately, she is about a year too young to administer the actual test for this impairment, but it is certainly something we can work on over the next year and have Clare tested when she visits Dr. Mervis again next February. In the meantime, Dr. Mervis provided some recommendations for what Clare should be working on at home and in school and emphasized that Clare should definitely repeat kindergarten. All in all, I think the visit with Dr. Mervis was successful, but I know I am going to have two very tired people arriving home (hopefully any minute).

We leave at 5:30am tomorrow morning to bring Clare to Children's Hospital Boston for her dental surgery. If all goes as planned, Clare is going to have a tooth extraction, some fillings, x-rays, and a cleaning (what else can they squeeze in dental-wise while she's under anesthesia??). So she will be good to go for another six months. Then Clare and Shawn will stay overnight on the cardiac floor so they can keep an eye out as she recovers from anesthesia. Her surgery is scheduled for 8:30am, so prayers are appreciated!

Surgery Scheduled

2011-02-12T09:53:00.002-05:00
Clare's dental surgery is scheduled for February 23, which is perfect. It gives me more than a week to get all my ducks in a row plus it's over school vacation week, so Clare will not miss any school. Clare is only in a half-day morning program so between the Williams syndrome clinic, snow days, and snow delays (kindergarten is cancelled completely when there is a delay), she has already missed so much school over the past few weeks. Yet the surgery is not so far out that my days of freaking out over whether the "bubble" in her tooth has popped and is releasing dangerous bacteria into her bloodstream and potentially her heart is down to only a *short* 11 days.

I will take Clare down to Boston on February 16 to do her pre-op day. This will give us the opportunity to meet with the team involved in the surgery and go over everything. I have been impressed so far with how on top of everything they are (as they should be, but you never know!). The surgical coordinator and I talked yesterday on the phone (about an hour after she called me with the surgery date), and she had already spoken with Clare's cardiologist, pediatrician, and nephrologist to get the approval from them to proceed with surgery. She only needed me to sign a release with the endocrinologist before they would release any information. (Which took me about three minutes thanks to fax machines!) Everyone has given the thumbs up and is on board, so we are ready to go. I will get to talk with cardiac anesthesia on the 16th, but we have dealt with them (too) many times over the past six years, so I know they are usually well-familiar with WS and the associated anesthesia risks.

Clare will have to stay overnight on the cardiac floor following the procedure just to be on the safe side. She has had issues with anesthesia in the past (abnormal rhythms, cardioversions, blood pressure swings), but she was undergoing a catheterization each time, so the doctors were actually in her blood vessels and heart. When she had her fistula surgery eighteen months ago, she did great during the six-hour surgery with anesthesia. She had a lot of trouble post-surgery from the effects of so much anesthesia, though - high fever, vomiting, general yuckiness. The dentist assured me that this was a straightforward procedure, however, and Clare should not be under anesthesia that long. Hopefully an hour tops. So her recovery from the anesthesia should not be as bad. But I am glad they are keeping her overnight so the cardiac nurses and cardiologists can keep an eye on Clare post-surgery. If all goes as planned, she will be discharged the next morning.

I have our childcare lined up, and we are ready to go! Thankfully Clare is only in pain when we go near the tooth, so we are avoiding brushing that part of her mouth until after the surgery. Shawn and Clare are heading down to Kentucky on the Monday and Tuesday prior to her surgery to meet with Dr. Mervis, one of the WS experts in this country. So it's going to be a busy couple of weeks for Clare. Unfortunately, school break is not going to be so relaxing for her!

The Perfect Storm

2011-02-10T18:53:00.003-05:00
There are some days when it's just one "problem" after another, and I am on overload at the end of the day and feel like I don't even know if I am coming or going. When Clare was younger, these days happened more often since she was in a more critical condition, so I am out of practice with dealing with them now!

Over the weekend, I noticed that one of Clare's back molars looked funny. Clare has had some cavities for almost a year now that we have been monitoring with our local pediatric dentist (who specializes in children with special needs) and the pediatric dentist at Children's Hospital (who would perform any necessary procedures in an OR setting at the hospital). Since anesthesia is very risky for individuals with Williams syndrome, we have been doing all we can to avoid having any dental work done. In November, Clare had a set of x-rays taken down at Children's, and we were cleared to just continue her care with our local dentist. The cavities had sealed themselves and none of the nerves were in danger. So when I saw that her molar looked black, at first, I thought it was just chocolate (shocker!). But Clare said it hurt when we brushed it, and the "chocolate" did not come off, so I made an appointment to have our dentist take a look. Which was today. And, sure enough, the pulp of the tooth is gone. So she needs a pulpectomy (kids' version of a root canal) and crown. As in yesterday (as the dentist put it). Clare is now at a dangerous point where bacteria getting into the bloodstream is a very real risk.

In addition to our normal running around, today was also allergy clinic day for Jamie (if you're a regular blog reader, you know what hell that is for me!), and we are at the end of Shawn being away for the week at a sales meeting. So my patience is thinner, my tolerance is lower, and my legs and back are killing me from shoveling slush and ice this week. And then I added phone calls to Clare's cardiologist and Boston dentist to my to-do list. We still had not heard back about Clare's echo results, so I wasn't even sure she was cleared to undergo anesthesia right now.

Clare's cardiologist, Dr. S, (finally!) called me back tonight. Right at dinner time. On my cell phone (we get almost no service at our house). So I left four kids at the table with hamburgers and pasta and raced out to answer the call and freeze my tushie, standing on the driveway (neglected to grab a coat or gloves in my rush to pick up before it went to voicemail) while I talked to the cardiologist. But I am not complaining. Really I am not because I was so glad to hear her voice.

The good news is that Clare is cleared for her dental surgery from a cardiac standpoint. She is still clinically stable, and her heart looks good compared to what it used to look like. Dr. S feels that Clare will tolerate the anesthesia well and, as long as cardiac anesthesiology is on board, she gives the thumbs up for the dental procedure. However, the bad news is that her pressures are creeping up again. Her aorta gradient and one of her pulmonary gradients are higher as well. Not dangerously so in that she needs to have something done right away, but we are at the point where her cardiologist is talking "cath." Yuck. Dr. S consulted with the cardiologist who handled Clare's care when she was cathed as a baby, and they agree that within the next 12 months or so, Clare really should undergo a cath. Primarily to get a more exact picture of what is going on in Clare's heart, but, most likely, to do a little work while they are in there. The plan right now is to do another echo in 6-9 months and then schedule a cath from there.

So there's my perfect storm. Too many things piled on top of each other in a chaotic day after a long week for me to think about. I am still waiting to hear back from the dentist at Children's to actually schedule a date. I really do not think the procedure itself is going to be a big deal. It's just more the trepidation of putting Clare under anesthesia combined with the fear that bacteria could get into Clare's bloodstream if this is not taken care of soon. Hopefully I'll hear something before the weekend.

Feeling Sorry For Myself Never Gets Me Anywhere

2011-02-07T14:43:00.003-05:00
Clare and I went to see Disney on Ice: Princess Wishes last week. I took Clare last year, and she loved it. Every time we pass the hockey arena, she asks if the princesses are there. So when they came around again this year, I knew we were definitely going. Clare insisted on dressing up as Cinderella that night (she remembered seeing all the other little girls in their princess dresses last year, and she was not wearing one). She was so over-the-top with excitement to go. We had seats with friends of ours, so Clare was thrilled to be with her friends as well.

For me, watching Clare during the show was better than watching the show. She gasped, exclaimed, grinned, was enthralled by the show. Until the big, evil, fire-breathing dragon from Sleeping Beauty appeared on the ice. Fireworks exploded from its mouth and a line of fire blazed on the ice (actually pretty cool from a special effects viewpoint). In one instant, the enchantment was over. It was a hundred times worse than when Cinderella's magic wore off at midnight and her gorgeous carriage was just an old pumpkin again. All of a sudden, my princess was a quivering mess. Sitting on my lap, crying, hands over her ears, which eventually erupted into a full-blown hysterical fit. The evening ended with me carrying Clare out of the arena and into the icy night while she screamed bloody murder.

Clare fell asleep in the car almost immediately, and I cried the whole way home. The horrible part is that I was not crying for Clare. I did feel bad that the dragon scared the you-know-what out of her and put a sour note on the end of our otherwise-wonderful princess-y evening. And I do hope that this does not ruin her anticipation of going again next year. But I admit I was crying for me. For me. For poor, poor me who had to have a child who could not, at the age of almost-six, understand that the dragon was not real. A child whose hyperacussis made those fireworks sound like a thousand times louder than they really were. A child whose body is programmed in such a way that the adrenaline and cortisol rush of the "fight or flight" response lasts four hours in her little body. Four hours of stress hormones racing around her bloodstream, often causing her to become aggressive, hypervigilant, and over-reactive. Sometimes paralyzing her so that she cannot move. It really was a blessing that Clare exhausted herself out and fell asleep because once she is "triggered," it can take awhile for her body to maintain stability again.

So I cried the whole way home. Shawn came out to the garage, carried Clare in, and put her in her pajamas and into bed. He asked if I wanted to talk about it, but I was still so wrapped up in my self-misery and pity-party that I just wanted to go to bed myself.

Waking up to a new day usually helps me gain perspective. And having my little curly-haired girl crawl into bed, put her arms around me, and say, "I'm so sorry, Mommy," made my heart ache. I have challenges in my life. We all do. And, yes, sometimes I think my challenges are greater than other parents because Clare does have so many medical, developmental, and emotional issues and that puts me into my "poor me" state of mind. But then I realize that feeling sorry for myself never gets me anywhere. I cannot wallow in self-pity and spend the day in bed, which would be my preference some days. Something or someone will snap me out of my funk and make me focus, not on the challenges in my life, but on all the blessings. I am not a touchy-feely, mushy kind of girl. I loathe self-help books, Dr. Phil types, and other such devices. But I am finding these days that a dose of perspective, a thought to meditate on, and prayer can get me through. And all the hugs my children will give me!

Happy 8th Birthday, Jamie!

2011-01-30T06:33:00.002-05:00
Eight years ago, Shawn and I welcomed our first child into this world. There were many times in our early married life that I thought we would never be able to have a baby as we struggled with some infertility. Then after going six days past my due date, laboring for 24 hours, waiting another agonizing 40 minutes after delivery (Jamie swallowed meconium upon birth, so the NICU team worked on him for a bit), I was in disbelief when I finally held my baby boy in my arms.

Looking at you today, Jamie, I am in disbelief once again that you are that same sweet (BIG!) baby I held eight years ago. I cannot see any of that baby in you anymore. Now I can see glimpses of the young man you are becoming. Your current passions are soccer, reading (and I love that you are engrossed in both Charlotte's Web and The Wizard of Oz - you are so like your mother and grandmother in that you read more than one book at a time!), Manchester Monarchs hockey, and Star Wars (particularly Star Wars Legos). You thrive at school, love to be active, and are better than I am at most puzzles and games. For the most part (*grin*), you are an attentive, patient older brother to all your little siblings. You and Violet especially have a beautiful bond, and you are so sweet to your baby sister.

We are so proud of you, James Michael, and we love you so much! Happy Birthday!

Time to Count

2011-01-26T19:11:00.005-05:00
Clare had her visit with the pediatric nephrologist last week. And it was so-so news. The good news is that her kidney scan did not show a significant increase in the amount of calcified tissue in her kidneys compared to her scan six months ago and there was no evidence of kidney stones. The bad news is that the damage that has been done is permanent and that tissue will never function again. The good news is that Clare is still young and her kidneys have lots more growing to do. If we can halt the calcification process now, when she is an adult, a scan will barely show the calcified tissue. The bad news is that if we can't, Clare could face renal failure in the future. It was a lot to take in after a long day at the hospital.

The plan right now is to alter Clare's diet. Not what I wanted to hear from a selfish standpoint! She is on a restricted calcium and low sodium diet now. The sodium is not really a big deal since we are low sodium in our house to begin with. The calcium is another matter. She is not supposed to have more than 800 mg of calcium per day. Which is very tough considering that she used to get about 900-1200 mg from her milk intake alone! Never mind the yogurt, cream cheese, macaroni and cheese, cheese quesadillas, the list goes on and on and on. And now that I am scouring labels, I am finding that so many foods are fortified. For example, the pancakes Clare loves have 200 mg of calcium in them. She has her pancakes and a cup of milk for breakfast, and we are already at over 400 mg. So it's going to be tricky. It's going to take some more planning and figuring on my part. (Such as finding different pancakes for Clare - she eats them daily, so I buy frozen ones because I don't have time every morning to make them from scratch. Now I will find a way to make them where they are lower in calcium and sodium, make a whole batch on the weekend, and freeze them for the week.) It's going to take more forethought in meal planning than I give on most days. I plan my dinners out 1-2 weeks in advance, but breakfast and lunch are almost never planned. Yesterday, I had already planned on trying out a new Tex-Mex recipe for dinner and making cheese quesadillas for those who turned their nose up at my new food (which usually includes four little ones around the table). However, I did not think of that when I fed Clare her pancakes for breakfast, then after a tough day at school (she had been out of school for over two weeks due to doctor's appointments and snow days and is having some readjustment), I promised her macaroni and cheese and chocolate milk for lunch. Dinner comes along, and Clare is already over her calcium and sodium limit. Grrrr... I am sure eventually I won't even have to think twice about the combination of foods in a day, but for now, it's taking a lot to get there!

Clare will see the nephrologist again in March to test her urine and blood calcium again and see how the diet is working. If there is no improvement, then medication is the next option. However, medication for this in children with Williams syndrome is tricky in another way. They do not always absorb calcium properly in their bodies. By Clare's kidneys absorbing the calcium, it is keeping the calcium from being absorbed into her bloodstream and causing hypercalcemia (which can have its own list of symptoms). If the medication keeps the kidneys from absorbing the calcium, then she will have to be monitored to be sure that it does not cause hypercalcemia. It's a balancing act. So, as hard as it will be, I am focusing 100% on keeping Clare's diet in the limits we've been given. (As a medical note of interest, calcium likes to follow sodium around, so the theory with the low sodium diet is that if the amount of sodium going through the kidneys is lowered, then the amount of calcium following that sodium will be restricted, too.)

Also in March, Clare is going to have a vascular scan done of her renal arteries. Based on the renal ultrasound (which is not as good at looking at the renal arteries) and her blood pressure, the nephrologist feels she may have some stenosis in her renal arteries. If the vascular scan does show stenosis, then Clare will undergo a sedated MRA to determine how much stenosis. The vascular scan cannot do this and the MRA would be a one-shot deal, but we are choosing to go with the test that does not require sedation first. We don't put Clare under unless we know we have to! And, if there is stenosis, depending on what is seen on the MRA, we will discuss treatment options from there. Similar to her pulmonary arteries, she may need balloon dilations or stents to open up her renal arteries. For now, we continue praying that all this will work itself out and are grateful that Clare is as healthy as she is.

Happy 2nd Birthday to my Baby!

2011-01-21T07:46:00.008-05:00
Happy Birthday to my sweet TWO-YEAR OLD, Violet Grace!!

This is always the year when you stop being my baby and start becoming a big girl. You have changed so much over the past year. You love baby dolls and purses. We often see you pushing your baby dolls around in the stroller with a purse over your arm full of all the essentials a mommy needs – phone, chap stick, bracelets, Lego men. You want to be helpful and your two chores are dust busting under the dining room table and throwing any and all garbage away. You can be the best at picking up toys, but only when you want to and if you consider it fun.

In the morning when I bring you downstairs, you have three questions for me - "Where's Dada?" (sleeping), "Where's mmm mmm?" (your milk which we promptly get from the fridge), and "Where's kitties?" (it's become your job to open the kitty door and call them upstairs). I am continually amazed at how different each child can be, and your favorite foods include bananas, fruit snacks, cheese quesadillas, and hummus with pita chips.

You love your older brothers and sister and want to be involved in all that they do (unfortunately for them sometimes!). However, you also enjoy the mornings when they are all at school. You play by yourself for at least an hour and love having the run of the house. You are still my Mama's girl, though, and most times, you are right by my side.

I love you so much, sweet girl, and a big HAPPY BIRTHDAY to you!

What Has Clare Been Up To??

2011-01-17T14:35:00.011-05:00
This is a VERY common question in our house these days! Clare is going through a... shall we say... challenging phase right now. If she is quiet for more than five minutes and we cannot physically see her at that moment, chances are, she's into something she's not supposed to be. (Like I just stopped her from squeezing all the gogurts out onto the kitchen table.) We talk a lot about impulse control, ask first, don't touch, quiet hands, blah, blah, blah. She can parrot everything back to us, but actually controlling herself is another matter. On the plus side, I have ample opportunity to practice the virtue of patience.

We were in our medical lull for a few months, but now it's been back-to-back doctor's appointments. Clare has been seeing the pediatric dentist at Children's Hospital Boston. Shortly before Christmas, her x-rays showed that, with her special toothpaste, her cavities have sealed themselves and were not near the nerves, and we have successfully avoided the OR to have the cavities filled (at least for right now). She can now follow up with our local pediatric dentist. As blessed as we are to be so close to Boston, no trip to Children's Hospital is short or easy, and the pediatric dental office has been the most grueling process so far when it comes to logistics. I am glad these monthly visits are over!

Almost five and a half years after her diagnosis, Clare finally went through the Williams Syndrome Clinic out of Children's Hospital Boston for the first time. We heard varying reports about the clinic and never felt particularly compelled one way or the other to take her. The one thing everyone agreed on was that it was a long, exhausting three-day process. However, after attending the WS convention this past summer and then Clare starting kindergarten, we agreed that it was now the time to bring Clare to the clinic. Due to the weather, Shawn ended up staying with Clare in a hotel in Boston for two nights. They were able to make it home the third night and ventured back out early the next morning. I am glad we waited a few years before doing the clinic because I doubt Clare's stamina could have lasted for the L-O-N-G three days (actually four total since she had the speech evaluation the Friday prior). Since Clare's medical care is very well-supervised, the clinic for her was primarily an evaluation of how she is doing in other areas. She was evaluated and tested with speech therapy, occupational therapy, physical therapy, audiology, behavioral psychology, and neuropsychology. Preliminary reports are that Clare is doing well as a whole (and tested well compared to other children with Williams syndrome). We have to wait a few more weeks for the full reports, which will then give us a chance to see what changes, if any, need to be made at school.

Clare also had her cardiology appointment and echocardiogram while at the WS Clinic. It has been nine months since her last echo (the longest stretch ever!), so we are anxiously awaiting the results. Due to the structure of the clinic, Clare's cardiologist did not review the echo prior to meeting with Clare and Shawn, so she could not relay the results immediately. Now, a week later, we still have not heard back from the cardiologist. (And, yes, we have called, e-mailed, and Shawn stopped in on their last day of clinic.) Part of my brain believes that Clare's heart remains stable and we can keep chugging along. She shows no symptoms at home of having any trouble and her blood pressure has been relatively under control (without any meds). However, the other part of me keeps saying that it has been over three years since Clare had a cath done, so our time has to be up soon. At some point in the future, Clare will need another open heart surgery to remove the existing stents in her pulmonary arteries and insert bigger ones. When the initial stents were inserted at five months old, the cardiologist predicted then that Clare could possibly get to the age of 10 before that would need to be done. It's hard to believe we are already over halfway to that point. So I will breathe much easier once we hear the echo results.

In new developments, I am taking Clare up to Children's Hospital at Dartmouth (about an hour north of us) to meet with her new doctor, a pediatric nephrologist. Clare had a renal scan performed last summer in Boston which showed calcium deposits in her kidneys. After that finding, Clare underwent multiple rounds of blood work and urine tests to monitor the calcium in her body. Her blood calcium levels have been slightly above the normal range, so she is considered to be borderline hypercalcemic. Her urine tests showed that she is excreting calcium in her urine as well,. Many children with WS have problems with hypercalcemia (for some reason, individuals with WS have trouble absorbing calcium properly). Clare was borderline hypercalcemic when she was a toddler, but was always asymptomatic, so we never did anything about it. Now, however, since the calcium is showing up in her blood, urine, and kidneys, it's time to do something. Clare's endocrinologist did another round of blood work and urine tests a couple weeks ago (since he had to test her thyroid levels, do it all with one stick!), and I have a CD of Clare's renal scan from last summer to bring with us. Clare will have another scan (for comparison) tomorrow, then we will meet a few hours later with the nephrologist to discuss the results and what treatment, if any, is necessary. I am just praying that we do not have to alter Clare's diet too much. Being a limited food eater, dairy is a huge component of Clare's diet - she gets the majority of her calories from milk, macaroni and cheese, cream cheese, and yogurt!

I will be glad to get all these appointments behind us and return to our schedule. Due to the clinic, snow days, and holidays, Clare will miss almost two weeks of school. We are all craving our routine!

My Little Friend

2011-01-12T08:32:00.004-05:00
No matter what I am doing in the kitchen, Violet is always right there with me. Right now I am obviously on the laptop, and she immediately pushed a chair right next to mine. She is standing on her chair scribbling on a scrap paper next to me as I type. (And proclaiming "Ta da!" after everything she scribbles so I can properly admire it.) When I am cooking, a chair gets pushed over to the counter or stove so Violet can see what I am doing. This often involves looking at all the utensils in the drawer or reorganizing my Keurig caddy. Sometimes it means going through the spices or examining Clare's bag of bite blocks and mouth exercise toys or rearranging the vitamins and prescription bottles. Whatever it is, it ALWAYS involves a mess, makes my chore or project even longer, and answering over and over, "What's this, Mama? What's this, Mama?" It also is one of the sweetest parts of my day.

Each of my babies seem clingier than the last. I don't know if that is really true or just my perception because my days are busier and there are many times I would love them to be less clingy! Violet has been very mommy-attached since day one (as daddy, aunts, and grandparents can attest to!). When I had kidney surgery over a year ago, we weren't sure if Violet would survive unscathed. Leaving her in the childcare room at the gym was a nightmare for months. Looking back, Violet has come a long way in being more independent. On those two mornings a week when the three older kids are in school, Violet actually enjoys her independence from me and her older siblings. We have about an hour to ourselves between drop-offs and pick-ups, and Violet loves to go off and play by herself. I can hear her singing to herself and talking to her baby dolls. As clingy as she seems to be sometimes, I do believe that she is a child secure in the love and presence of her mommy which enables her to play independently for longer periods of time than her siblings were at almost two years old.

Whatever the psychology behind it, my little friend and I are going to have our worlds re-adjusted in about five months when the baby comes, so we are enjoying these days together.

Abundance

2011-01-06T13:26:00.002-05:00
Last week, I was surrounded by children, toys, presents, candy, boxes, bags, and garbage, garbage, and more garbage. We were unexpectedly snowed in down in RI at the beginning of the week and missed garbage day. After Christmas is not a good time to miss garbage day! Between regular household trash and all the wrappings and boxes from Christmas, it started to line the garage walls, coming up into the mudroom, and paper and recyclable refuse had its own little corner in the kitchen. By the end of the week, Shawn started parking in the driveway so the trash could pile in his spot in the garage. We truly were overwhelmed with abundance!

In my wildest imaginings, I never pictured myself as a stay-at-home mom of four (soon to be five) children. Growing up, babysitting was a necessary evil to earn some money. I entered college as a double science major/pre-med and still entertained my fantasy of becoming a forensic pathologist. Even after I realized during my sophomore year that science was not my true love and switched majors, I still yearned for academia and a career. I loved history and starting dreaming about higher education, scholarly theses, and college professorships. I started dating Shawn in my sophomore year. No lightning bolt struck me, no voice of God in my head telling me he was the one, but everything did change. A few months after I graduated with my history degree, we were married.

Looking back at my life, it amazes me to see the pieces fall into place. (Some of them at least!) Switching majors, graduating with a degree that I was questioned about again and again, "What are you going to do with a history degree??", accepting a job at a local insurance company which then relocated me to New Hampshire. There were times when I did wonder what I was doing and what path was I on. But Shawn and I were in this together, and that's all that really mattered to me. Now I know why I only had a job and not a career. Shortly before Jamie was born, I quit working completely. I enjoyed my job, but I did not think twice about leaving it. I have never missed working one day since I had my children. I am glad I did not spend all that time and money pursuing degrees and careers that might cause an internal struggle of career versus motherhood. I have never felt shortchanged or that I gave anything up when I chose to become a stay-at-home mom. I know now that THIS is what I am supposed to do, where I am supposed to be, who I am.

So, on this celebration of the birthday of my dear husband, I want to wish Shawn a very happy birthday. I cannot imagine my life now without you and this abundance of life, joy, and love that surrounds us. I love you! Our quiver is indeed full!

“Behold, children are a gift of the Lord; the fruit of the womb is a reward. Like arrows in the hand of a warrior, so are the children on one’s youth. How blessed is the man whose quiver is full of them; they shall not be ashamed, when they speak with their enemies in the gate.”
--Psalm 127:3-5

Enlightenment

2011-01-04T17:20:00.003-05:00
With his allowance, Jamie purchased a booklight for himself at the dollar store a few weeks before Christmas. Since the boys share a room, on nights when Simon lost the privilege of having reading time in bed (which actually happens quite frequently!), Jamie was allowed to use his booklight to read in bed when all the room lights were shut off.

Simon coveted that booklight. Jamie is very possessive of his little light and kept it in a safe place so his younger siblings could not touch it or, more aptly, break it. Simon worked diligently for weeks on filling up his sticker chart solely for the purpose of possessing a booklight. (Simon and Clare earn a selection from the dollar store once their sticker chart is complete in lieu of getting an allowance.)

Yesterday was the big day in which Simon became the proud owner of his own booklight. And his older brother obviously inducted him into the Secret Society of Booklight Owners. Today in the car, I overheard Simon telling Clare: "You know what Jamie told me? Jamie told me that when Mom comes in the room and says 'lights out,' when she leaves, that's when we can turn on our booklights and continue reading with our booklights!"

Judgement-Free Zone

2010-12-31T07:57:00.002-05:00
Shawn and I decided to cancel our gym membership for 2011 and purchase an elliptical for the home instead. Over the year, for the amount we were paying for our membership plus childcare (while I worked out), the cost of the elliptical was considerably less. There were a slew of other reasons why the convenience of having an in-home machine was better for our family. Plus we figured that if the big ole machine was sitting smack-dab in our bedroom, we would feel guilty not using it and it would motivate us to exercise more.

This morning, Shawn broke in our machine. In a slightly different atmosphere than what he was used to at the gym. His lovely wife lounged in bed, sipping her coffee and reading her latest book, How to Tuck in a Superhero by Rachel Balducci (HIGHLY RECOMMENDED to those moms of boys out there!). His two equally-lovely little girls were perched on the side of the bed watching Daddy exercise and offering words of encouragement. (I had put on a show for them to watch, but Shawn was apparently much more interesting.)

"Dada doing? Dada doing?" (from Violet)

"What are you doing, Daddy? Is that your exercise machine? What's in your water bottle? Why are you breathing like that?" (from Clare)

The one-sided conversations continued for the entire length of the workout. Towards the end, Clare was standing alongside the elliptical, moving her arms and legs like Shawn was and she mimicked the huffing and puffing perfectly. I'm thinking that tomorrow, we're going to be locked out of the bedroom during muscle hour.

Charity Case

2010-12-07T13:23:00.003-05:00
I am experiencing "all-day" sickness in the first trimester of this pregnancy. I have had some level of "morning" sickness in all my pregnancies, but it always seems to get worse. I remember with Violet's pregnancy, I actually vomited frequently, which I have not done this time. So I don't know if the sickness gets worse or if it just gets harder because each pregnancy finds us a much busier family! In either case, I am slowly starting to feel better, but am still very tired by the middle of the day and the act of creating meals is very difficult for me. The mere thought of chopping up vegetables or touching raw meat makes me gag. There are nights when I cannot even stand the smell of Shawn cooking dinner, so I stay far out of the odor's reach in my bedroom until all remnants of dinner are cleaned up. Thankfully I can usually manage breakfast for the kids and, as long as lunch is sandwiches (which are usually somewhat odorless), I am okay. Shawn has been awesome about picking up my dinner slack, so we've been chugging along fairly well. Until the week before Thanksgiving.

Shawn began a new job at the end of October, which involved four weeks of training. One week prior to Thanksgiving week and three weeks after. Three weeks in a row! I paled at the thought of three weeks by myself with the four kids. That week before Thanksgiving, the kids lived on cereal, pancakes, and mac & cheese. We did one night of Burger King (them, not me) and I thought I would throw up. How was I going to survive?

I hate asking for help. With a passion. I like to be independent. I like to know that I can do this by myself. Be strong. Be this cool mother of four kids who can handle anything thrown her way. But, in reality, I really could use a little help. Shawn is a big contributor in the school drop-offs and pick-ups since he normally works out of the home. A friend offered to bring Jamie home every day from school. I felt so bad about the inconvenience for my friend, but even that one thing made a huge difference. It meant one less trip getting kids in and out of the car and allowed Violet to actually have an afternoon nap. Then another friend organized some meals for me. Another huge help. It was a comfort to know that not every night would be cereal or pancakes for the kids. And, on those nights I just was not up to making dinner, I did not feel so bad doing something simple because there would be other nights where a prepared (more balanced!) meal would be brought to our door.

It took me a long time to get over the guilt of accepting help from people who have equally busy lives. (And I still feel a tad guilty because it's not like the kids would be dead of starvation by the time Shawn comes back home.) But then I read a great article in Faith and Family magazine (and I apologize that now I cannot find the magazine and give the author to proper credit). It was about a mother who had to rely on help from others after her husband left her. She spoke to those out there who are in a position to help those in need and to those who needed to accept help. She basically stated it was my Catholic duty to allow others to help me. That by doing so, I was helping those people enact corporal works of mercy in a very real, livable way. We can't all volunteer at the soup kitchen and feed people. We can't all set up a prison ministry or visit nursing homes and hospitals. These days, (even when not sick and single-momming it for a few weeks) it takes everything I have to keep my own children clothed, fed, happy, and healthy. But I can cook extra food one night for a family who just had a new baby. And I can babysit for a friend so she can volunteer at her daughter's school. And I wouldn't want those people feeling guilty about accepting help from me, so I need to stop feeling that way about others. So to all those who have helped out while Shawn has been gone, a big thank you from me and you are one step closer to heaven!

Baby #5 is on the Way!

2010-11-24T15:15:00.003-05:00

Due June 17, 2011

Revision and Reality

2010-11-10T10:01:00.003-05:00
Things have been moving along with amending Clare's IEP and adding some services. We had a very successful meeting with her special education team, despite the nervous pit in my stomach and talking too fast at the beginning of the meeting. Her kindergarten teacher, special education teacher, and therapists all agreed that Clare is very behind academically compared to the rest of her class. Socially, she is doing a great job adjusting to kindergarten and interacting with her peers. But while her classmates are writing letters and words and learning how to read, Clare has only learned to write two letters and can only recognize about five letters (although she can rote spell her name out loud, she is inconsistent when it comes to actually recognizing the individual letters in her name). In our opinion, we have not seen any progress in Clare academically. One of the ABA specialists for the school was at the meeting as well, and she agreed that ABA would be a great way to help Clare learn her letters and numbers and is eager to start working with Clare. We have another meeting scheduled at the end of this week to formally amend Clare's IEP to include more academic goals and add ABA services. I am excited to see what progress Clare makes after beginning ABA services. And, after this meeting, I felt like we were finally working as a team to help Clare, and it is not her parents versus her teachers. I definitely felt much better leaving the meeting!

With all the concern over Clare's academic progress, I find myself sinking back into a Williams syndrome hole of pity at times. I have often said I wish we could put Clare back into her special preschool bubble, but that is for my sake, not hers. In that bubble, I know the other parents aren't looking at me wondering what the heck is up with that girl. In this new mainstreamed life, I am not so confident that the other parents aren't asking those questions. In reality, they probably could care less, but I still feel like we scream DIFFERENT!

Clare went to her first kindergarten "girls only" birthday party. It was a pony party at a barn, so I figured there would be some riding involved. Clare was beside herself with excitement about the birthday party and riding a horse. She was wound up by the time we arrived at the party and was running around everywhere. The other girls at the party were a little more subdued, but I couldn't fault Clare her excitement. The owner of the barn was a little gruff and had so many rules for the girls - no running, no screaming, no yelling, no feeding the horses, don't walk behind the horses, etc. I could barely remember all the rules, never mind expect Clare to remember them. When it came time to riding the ponies, I asked the woman if I could walk beside Clare in the ring (there was no one doing this, just someone leading the pony). She told me that was not possible, so I explained that Clare has some balance issues. She basically cut me off and said, "She'll be fine, we've done this before." And Clare was fine. She did a great job and loved every minute of it! She couldn't wait for her turn again. I, on the other hand, fought back tears and had to walk away for a moment before I really lost it. A couple of parents asked me if I was okay. My neighbor (whose daughter is in Clare's class) was very sweet and gave me a hug and told me that Clare was loving it and doing fine (she was the only parent there who knows about Clare). I know I looked like a crazy mom crying over my daughter riding a horse, but I was so full of mixed emotions. Scared of letting go and trusting that Clare would be okay (in the hands of a stranger who brushed my concerns aside). The realization that, although Clare had a great time at the party, none of the girls really played with her, and she was my buddy throughout the party. And joy that Clare loved every minute of the party.

I have to remind myself that it's not my perception of Clare being left out that counts - it's HER perception that really matters. And she does not feel left out. Maybe she will later in her life. I don't know. But right now, she enjoys being in the moment and does not worry about what others think. Clare does not hide her emotions. If she is happy, you know it. Excited, doubly so. And upset, triple! I know I could take a few lessons from Clare.

Settling In

2010-10-06T12:42:00.005-04:00
We have a month of school under our belt and are fairly well-settled into our school routines. As much as I miss the laziness of summer mornings (when I didn't have to drink my cup of coffee while running around the kitchen making breakfasts, packing lunches, and getting kids dressed and out the door to school), I love having a routine to our day. I love knowing that there will be chaos for about two hours until Jamie and Clare are at school, then we are more leisurely for a couple hours, followed by the lunch rush, then another break during the "quiet time" in our house before all four kids are together again in the afternoon for the pre-dinner rowdiness. It's all nice and predictable, and I am confident I can get through the crazy parts because I know those quieter times are coming.

We have received Jamie's progress report, and it was superior. He enjoys his new teacher, is thrilled that his class includes some new students (last year, there were only 11 children in his first grade), and is excited about learning to play the recorder this year. He chose a yellow recorder (which is actually quite ugly!) and likes to study the accompanying book so he can figure out new notes to play before he learns them in music class. I am still interested in getting Jamie involved in piano lessons, but I want to see what the indoor soccer schedule is like before we commit to another activity. The fall outdoor recreational league has a few more weeks left, so indoor is still a month away.

I attended the Curriculum Night at Simon's preschool last night. The teacher went into more detail about the day's schedule, the themes of each morning, the activities the children could look forward to. I know Simon is doing well in school. He loves it! There are still children who sob as they enter the classroom, but Simon is so eager to go and asks every day if it's a school day. The children have paper hand prints on the wall and, whenever they do a kind deed, they get to put a sticker on their "Helping Hand." Proud mama saw last night that Simon had four stickers - the most in his class! We have our challenging moments with Simon at home, but I am glad that, at school, he is that sweet boy I know is in there somewhere! Simon is looking forward to his first chance to be the Star of the Day (special helper at school), which happens to coincide on October 28, the Feast of St. Simon and the preschool's Halloween party. (And Jamie's school's Pie and Bingo Night - Simon believes his amazing parents planned all this just for his feast day when the other kids only got to choose a special dessert on their feast day. You try explaining coincidence to a 3-year old.)

Clare loves kindergarten. She is making new friends and has been invited to her first birthday party (a "pony party" where she will get to ride a horse for the first time - she cannot wait!). I wish mom and dad were as enamored with kindergarten. After my panic attack following the Open House, we formulated our plan. I spent 40 minutes on the phone with a fellow WS-mom and received so much good advice. That led us to do three major things - send a formal letter to the school requesting some evaluations and testing (among other assessments, the district bypassed giving Clare the kindergarten assessment since she had an IEP - which, now I know, was a mistake to just okay that), make an appointment for Clare to do the three-day Williams Syndrome Clinic out of Children's Hospital Boston in November, and finalize our plans to take Clare back to Dr. Mervis in Louisville, Kentucky over February break. Shawn also talked to Dr. Mervis over the phone, since February is a long way away and we need to see how Clare is doing now. She was able to give him some insight in where Clare should be academically as opposed to where the school expected her to be. So we have our appointments with the WS-experts scheduled, and we are waiting to hear back from Clare's school about a meeting date with her special education team to discuss Clare's progress and where to go from here.

After hearing Dr. Mervis' thoughts and talking to other parents, I am much calmer about the status of Clare's education, but I still feel there is more we can be doing for her. At home, our primary academic focus is to engage Clare in wanting to learn her alphabet and be excited about recognizing letters. I purchased an alphabet music CD, alphabet charts, and Leap Frog's Letter Factory DVD (thanks for the recommendation!). I hope that by immersing Clare in a variety of ways (auditory, visual, and tactile), we can make some progress. Clare learns differently than typical kids do. I see this every day, especially since Simon could recognize every upper case letter by the age of 2.5 and can recognize all the lower case ones a year later (and he learned this by us reading little ABC books together - nothing fancy or creative). That is our main point to the school - that Clare learns differently and needs different strategies to help her learn. This is where I think Clare's IEP, and the school, is failing her right now. There is nothing in her IEP to address her alphabet. When I question that, the answer I keep receiving is that it is part of the standard kindergarten curriculum, so it does not need to be in her IEP. When I questioned the special education teacher again about this, she stated that Clare will be "exposed" (her word) to it in the curriculum so I shouldn't worry. I argued that exposed does not mean Clare will learn it. Clare is exposed to Mandarin Chinese when she watches Ni Hao, Kai-lan but she certainly is not learning Chinese. So the next step is a meeting at the school, and we will stay tuned!

Mainstreaming is NOT for Wimps

2010-09-17T08:48:00.006-04:00
I attended the open house at Clare's school. I admit I was not in the best frame of mind going there since I had two sick kids at home, a husband suffering an allergy attack, and I myself had just gotten over a virus and was still pretty wiped out. Yet I did not want to miss Clare's first open house in her new school. I could manage the hour. Or so I thought.

Clare's kindergarten teacher passed out the children's folders of work completed in their first nine days of school. Included in the folder was an outline of what they would be working on literacy-wise in their first twelve weeks of kindergarten. As I quickly thumbed through the pages, I mentally thought "skip this, skip this, skip this, Clare is not there yet." It was all about lower case letter recognition and formation. Clare does not even recognize her upper case letters (except C, for obvious reasons), never mind writing any of them. How is she going to start learning lower case?

The teacher described their day, what they are working on, learning to sight read words, writing letters, writing their names, and simple math concepts. When she said the word "math," my brain went into panic mode again. Math? Clare can rote count to ten, but still has difficulty looking at objects and counting them. She often loses her place or just continues to rote count, even when she's passed the number of objects. Forget about math - she does not recognize or write any numbers. At this point, I admit I tuned the teacher out for the most part and concentrated instead on not crying. Which involves a lot of jaw-clenching, biting the inside of my cheek, and looking at whatever is hanging from the ceiling.

At the beginning of her presentation, the teacher had quickly introduced one of the reading specialists for the school. Aah... there was someone I would love to talk to. So after the presentation was complete, I made a beeline for this woman. I introduced myself and explained that I knew Clare would not be reading by the end of kindergarten. So what happens then? I babbled some stuff about her IEP, getting some extra reading services, blah, blah, blah. The woman was very kind, but she looked at me as if I was neurotic. As in, what is wrong with this mother who nine days into kindergarten is already freaking out that her daughter cannot read? I told her I knew I was jumping the gun a bit, but I wanted to give Clare the best chance to keep up with her classmates the best I could. I told her how we purchased an alphabet and phonics music program to work on with Clare at home. Clare is not really even interested in learning her letters, so her private speech therapist and I thought a program based on music would spark her interest. At this point, the kind lady (who really was kind, but who obviously thought I was a fruitcake and was just placating me by this point) told me that she really only worked with students in grades 1-5, that she had many students who needed help, and if Clare needed help once she was in first grade, she would see her then. Then she told me that she had met Clare briefly because her son was in Clare's kindergarten class and that she thought Clare was a doll. She then excused herself to talk to the teacher about her own child.

Now I really wanted to cry. I had no idea this woman was in the classroom as a parent, not as a specialist. The kindergarten teacher had introduced her to the class, so I assumed she was there to answer any questions about reading. Now she would have this idea in her head of what kind of parent she thought I was. (Add to that my already sensitive self-consciousness over Clare's school speech therapist witnessing both Clare and Simon having a temper tantrum, complete with hitting in each other, in the school hallway two days ago.)

Mainstreaming... that's the term for what we are doing with Clare. Inclusion. There's another term. My term is "trying to be as normal as we can get." But none of it's normal. None of it's typical. None of it's easy. I have so many doubts now about whether Clare really can be included. I know deep down in my heart she can, she will, and I feel (hope, wish, want) this is what is best for her. And I know we are only nine days into the process. I just never knew it would be this hard. I want to put Clare back into her safe, little, special ed preschool bubble - where she loved school, the teachers loved her, I had no idea where Clare stood skills-wise as opposed to the rest of her classmates and it didn't matter because Clare was progressing as Clare needed to progress. Not as the teachers needed her to progress or how I needed her to progress.

I had a good cry in the car on the way home from the open house. In the morning, Shawn and I discussed it, and I had another good cry. I hope all the crying and feeling sorry for myself is now out of my system for the time being, and we can start figuring out what we're going to do about all this mainstreaming stuff.

Facebook Makes Us Lazy

2010-09-15T13:07:00.003-04:00
"Facebook makes us lazy." -- the wise, wise Kerry F.

Lazy, impersonal, idle, procrastinator, the list goes on and on.

When I read Kerry's words, it instantly hit me that she was right - Facebook makes us lazy. I am extremely vulnerable to being sucked into the vacuum of Facebook as soon as I click the link on my Favorites tab. I don't think there's anything wrong with Facebook or other social sites in general, but I believe that Facebook makes us lazy when it comes to our personal relationships.

I saw a good friend today for the first time in about two years. Put it this way - she had never met Violet (who is almost 20 months old). She lives about twenty minutes away, we have children the same age (we have older children with the same name!), and she has a daughter with heart disease as well. We should get together more often. As we parted today, she commented, "Thank goodness for Facebook." And she was right as well. This is where Facebook has some value - we have been able to stay in touch, keep somewhat up-to-date on each other's lives, and discuss books (a passion we share). But it also made me sad that sites such as Facebook make it so easy to stay connected via the internet that we don't make more of an effort to stay connected in person. To sit across from each other in a room and catch up while our children get to know each other by working on puzzles together (and sweet puppies shower us with affection!). No amount of status updates can keep a true friendship going. I am guilty of getting so swept up in my busy life with busy schedules and lots of busy things to do that I don't stop for one morning to forego all that busy-ness and just BE. I am glad we both made the effort today to see each other finally!

I feel as if I am at a turning point in my life in some small way (getting all philosophical on you now). I have been evaluating my life, my values, my priorities, my reactions and emotions, and trying to take stock of what's really important and of true value in my life. There is nothing earth-shattering I need to change, but there are lots of little things that I want to work on. Having fun and unwinding on Facebook is all fine and good, but it has its place and I want to make sure it's a small place in my life and not let it be a poor substitute for my life.

Left Behind

2010-09-14T20:35:00.002-04:00
IEP goal: By June 2011, Clare will be able to ascend stairs with a reciprocal pattern without a rail and descend stairs with a reciprocal pattern with one rail with verbal cues.

There is a lot of hurrying that goes on in our house. Hurrying to get out the door to bring three kids to three different schools. Hurrying to pick children back up, make lunch, and get the little ones down for naps before it's time to get Jamie from school. Hurrying to make it to soccer practice on time (since Jamie's new coach is a little bit of a... drill sergeant). Hurrying to clean up, take baths, brush teeth, tuck everyone in. There are also a lot of stairs in our house, so a good portion of this hurrying is done going up and down the stairs. Even when we are not in a rush, the boys naturally fly past Clare on the stairs, and I often find myself doing the same. I will brush past Clare as she slowly makes her way down the garage staircase, gripping the handrail one foot down the second to join then onto the next step. I buckle Violet into her car seat, buckle Simon in, then I will go back to offer Clare a hand to hurry her descent down the stairs.

The other day, I was going down to the basement to switch some laundry from the washer to the dryer. Clare was ahead of me making her way down to the playroom. I went to pass her so I could get my chore done when I realized what I was doing. Was I in that much of a rush to get to the laundry that I could not wait for two minutes while Clare navigated the stairs? Did we always have to rush past Clare, leaving her behind by herself? Would she forever be last, everyone passing her by without a second thought?

I know - heavy thoughts on walking down the stairs. But it reminded me that there is value in taking our time. To Clare, she could slide down the stairs on her bottom, making it from top to bottom in about 20 seconds (and sounding like tap-dancing hippos doing so). But she is working so hard at home and at school to ascend and descend stairs by herself. Right now, she does so by holding the railing with one hand and carefully doing her one step with both feet at a time. Her next goal will be to do it reciprocally (as in one foot on one step, the opposite foot to the next step, you get the picture). Then working her way to going upstairs without holding a rail, and downstairs only holding the rail (right now, she is very unsure about going downstairs without holding a rail and someone's hand - she will do it, but she goes very cautiously). The ultimate goal someday is that Clare can go up and down stairs carrying her schoolbooks.

It still gives me some heartache when I think of all the things that the majority of our bodies do and learn naturally, but that Clare has to work so hard at learning. My heartache is for her that it just can't come easy for her. But just as there is value in taking our time doing something, there is also so much value in working hard to accomplish something. Even something as mundane as walking up and down the stairs. I know Clare is going to be left behind in some way or another time and time again. But I don't have to do that to her. I can walk with her down the stairs and hold her hand to make her descent easier for her. Or I can walk behind her, be patient, and have the chance to marvel at her determination in doing this on her own.

Fickle Fickle Lady

2010-09-14T20:30:00.002-04:00
It's been a month, and I just don't feel as if my journey in this blogosphere is done yet. I have stopped myself so many times from jumping on here to write something. And then I find myself wondering why do I stop myself?? Maybe no one will read me anymore, but I find that I do still need this outlet. I will be far from diligent about it, and I will stop making apologies for my neglectfulness. Shawn is always telling me I need to lower my standards (when it comes to the state of the house, the size of the laundry pile, the gourmet-ishness of the dinner). I disagree. It's not that I need to lower my standards, it's that I need to be okay with myself if I don't meet my own standards. So here we go again...

In Session

2010-07-19T14:10:00.008-04:00
We were at the convention "in session" for three days. Each day consisted of a morning keynote speaker then three information sessions (with multiple sessions to choose from for each time slot). Day One, we did everything. This is what the day consisted of:

Get everyone up, dressed, and to the continental breakfast. Drop Jamie off at the bus area for his school-age day camp. Drop Clare and Simon off at a different room for the preschool day camp, Shawn drop Violet off at another room for the baby camp (with me staying well out of the way so Violet would fuss just a teeny bit instead of a WHOLE LOT). Grab a second cup of coffee before securing seats for the keynote speaker. After the speaker, 15-minute break (with the familiar ladies room line that lasts the entire break), then off to Session One. Mad dash to the childcare rooms to pick up the three younger ones (Jamie stayed at the day camp off site and joined us again before dinner). Find somewhere to eat lunch, order lunch, coax the children to eat quickly because we only had an hour total to pick them up, eat lunch, and drop them back off. Which is not a lot of time in a big hotel with hundreds of other people trying to do the same thing (poor planning, convention people)! This time, Shawn and I divide and conquer - I bring Simon and Clare back to their room, Shawn is on Violet-duty. (More fussing from Violet than in the morning, but she still goes into childcare fairly well for a 18-month old who has never been in daycare, with a "strange" babysitter only once, and usually won't even hang out with the grandparents without looking around for mom). Arrive at Session Two a little late because the session starts at 1 pm, but the childcare rooms do not reopen until 1 pm (again poor planning, convention-people!). Session Two, 15-minute break, Session Three. Keynote speakers are incredible (made me cry two mornings in a row, dang it!). Sessions are chock full of good information, but now I am on brain overload - mentally-, emotionally-, and physically-exhausted. After Session Three, breathe a big sigh of relief, have about 10 minutes to do nothing, then it's pick-up time for all four children. Four children are extremely excited, wound-up, overtired, and fussy (all at the same time!) about their days. Enjoy about 30 minutes together before it's time to get ready for the evening event (which everyone is eager for because it not only includes horses, carousel, zoo, train ride, dinner, and banjo music, but also Auntie Erin!!), but everyone is also very tired and a little high-strung.

When Day Two dawned, I was already done. The sessions were so helpful and informative that I hated to miss any, but by the afternoon of Day Two, I needed a break. I went with Shawn to the keynote speaker and sessions one and two, but skipped the third session. I went back to the hotel room and took a nap (Shawn went on to his "dads only" session and the kids were all still at camp). By Day Three, Shawn was done, too. Since it was a Saturday, we had already planned months ago to only put Violet in childcare that day, and Erin would take the other three for the day. Erin picked them up for the Science Museum, but we did not put Violet in childcare. She had successfully lasted the first two days, but I think Violet was done with the whole childcare scene and was extremely fussy and clingy. Shawn and I agreed to skip all sessions on Day Three. Instead, we took Violet with us to the Vatican Splendors exhibit at the Missouri History Museum. Incredible! I am so glad we did this. The exhibit showcased art and artifacts from the Vatican's collection. Many pieces have never been outside the Vatican before. We saw amazing items, such as relics from Sts. Peter and Paul (actual pieces of their bones), Michelangelo's art and tools used in work on the Sistene Chapel, Pope John Paul II's chalice and patten, and the 16th century red cope worn by St. Charles Borromeo. We spent two peaceful hours at the exhibit (Violet cooperated by taking a nap in the stroller during the majority of this), ate lunch at a great little Mexican place, then found Gooey Louie's, a St. Louis bakery devoted solely to gooey butter cake. If you know me and my family well, you know that gooey butter cake is a staple in our diet! We were able to recharge during the day, then in the evening, Erin generously babysat in our hotel room (with pizza and a movie), and Shawn and I enjoyed the ending convention banquet minus children.

The keynote speakers we heard were Dr. Ray Guarendi (parenting "expert" - although he scoffs at that title - and father of ten children) and Gary Guller, the first man to climb Mt. Everest with only one arm. Not only did he reach the summit, he led an expedition of the largest ever cross-disability group to reach Mt. Everest Base Camp. Both men were exceptional speakers. Dr Ray had lots of good advice when it comes to parenting and discipline, but Gary Guller made me realize that we can't give up on our dreams no matter what life throws our way. That our kids CAN do anything, and it's not up to us or anyone else to tell them they cannot. Gary Guller was beyond amazing when it comes to being inspirational.

As I stated, the convention was overwhelming, but it was worth the trip. I still have not re-read and digested my notes and the binder of slides from the sessions we attended. I have a list of potential "issues" to look into and check off my list. We gained some insight into what's going on in Clare's brain, learned new techniques to help her cope with stress and anxiety, discussed ideas for a sensory diet, and added goals to her IEP, to name a few. We are very glad we made the trip to St. Louis (both in visiting family and for the Williams Syndrome Convention), but it always sweet to be home again!

Meet Me in St. Louis

2010-07-17T21:41:00.002-04:00
We are back home after a two-week road trip. (We called it a vacation, but it was only semi-relaxing!) Every two years, the Williams Syndrome Association holds a national convention, and this summer it was in St. Louis. We had not attended a convention yet (Clare was too sick in 2006, and 2008 was held in California, which was too far away for us), so when we heard that the 2010 convention was to be in St. Louis, we knew we had to go. My dad is from St. Louis, and his family still lives out there, plus my older sister is currently living in St. Louis (an older sister who my children love dearly and who they have not seen since Christmas). Plane tickets, rental cars, lugging gear around was too much to handle, so a road trip it was! We journeyed in three legs both ways - our home to my younger sister's in Philadelphia (where we spent the Fourth of July), then Philly to West Virginia (where my grandparents live), then on to St. Louis. On the way home, we did it in reverse! They were six long days of driving (about 50 hours total spent in the car), but the kids did fairly well! They are little troopers, that's for sure.

So the convention... many people told us that once you attend a convention, you will never miss one again. Frankly, I am not sure I agree with that! There were many wonderful things about the convention, but it was also so overwhelming. I am not sure what I expected exactly, but this little story is a good illustration about how it was way more than I could have imagined. Our third day of driving was the worst. Everyone was sick of being in the car. The last two hours of the drive, Violet was so upset about everything, that she was making herself sick. We ended up pulling over and switching the seating arrangement. Jamie and Clare sit in the same type of car seat and so do Simon and Violet, so we can do all kinds of seating arrangements without moving car seats. Violet would only calm down if I rubbed her head, so I squeezed in the rear row between Clare and Violet. When we finally pulled up at the Hilton in St. Louis, that's where I was - wedged in the back between my girls. Shawn pulled up to the valet, and we all waited while he went in to register (you quickly learn at hotels NOT to unload all the kids until you're sure you're staying put). As we waited, I saw this little face pressed against the glass from inside the hotel. It was a boy, probably a little older than Clare, who without a doubt had Williams syndrome. After a l-o-o-o-ng two hours, seeing that smiling, friendly, oh-so-familiar face doing something I have seen Clare do so many times instantly brought a smile to my face. I thought, that's so cool - there's another child with WS inside that hotel! When Shawn came back out, I eagerly told him about the boy. His words to me were simple: "Tree, you haven't seen anything yet." I asked him what he meant, and he said, just wait.

After unloading the children, the luggage, and the gear, we entered the hotel lobby. And Shawn was right. I hadn't seen anything yet. The lobby was full of faces, just like the one I saw pressed up against the glass. Babies, kids, teenagers, adults - all with Williams syndrome. They were everywhere. We have attended numerous WS get-togethers, but never with this size crowd. It was unbelievable. It was also quite overwhelming. It was in-your-face Williams syndrome. And I am not sure I was ready for that.

(to be continued)

Clare

2010-06-27T21:13:00.009-04:00
So much to say, so little time about our Miss Clare Bear! Clare is a proud preschool grad. I thought she would have some trepidation or anxiety about preschool ending, but either she does not fully grasp it or truly is okay with it. Her graduation day was full of songs, pictures, and treats. Her teacher cried as she handed out the diplomas which made me cry (totally ruining my punk look with my purple streaks - bad girls don't cry!). Clare has been with her teacher, Miss Karin, and assistant teacher, Miss Kelley, since she started in March 2008. They have watched her blossom from almost a baby into a big girl. They have been there with her as she learned to talk, run, climb, toilet-train, and spell her name. They should be proud at how much Clare has learned in the two-plus years in their classroom.

Clare will still do summer session at the end of July (she will miss two weeks because we will be on our big road trip to the National Williams Syndrome Association Convention!), but summer school is going to be in a different school (hopefully Clare will be in Miss Karin's classroom, though) with different classmates. In Clare's mind, she is moving on to kindergarten!

We had Clare's IEP meeting (minus Clare), in which we met the special educator for Clare's new school as well as the kindergarten teacher. The meeting went very well - we agreed with all the goals and were able to negotiate some extra PT sessions. Then we had a second non-IEP meeting at the new school (this time, with Clare) with the new staff - OT, speech, nurse, and special educator. We met the principal and assistant principal as well. We were able to go over Clare's medical and educational history as well as our concerns and goals in a more relaxed setting with Clare's new team. Again, we thought it went very well. Her new school is one of the best in the district and very small. Clare will be in a half-day morning kindergarten program. Clare and I attended her kindergarten orientation a couple weeks ago. She was thrilled to visit her new school again. We took a tour, met more teachers and staff, and played some games to get ready for kindergarten. Clare had a chance to explore the classroom, spend some time with the teacher (who I like so far), and meet some of her potential new classmates. She knew a girl from her preschool, a boy from the childcare room at the gym, and the twins that live down the street from us. We know Clare is in the morning class (we had it put into her IEP to be sure she was placed in the morning class), so we hope that at least one of the kids she knows is in her class as well.

Clare performed in her dance recital last weekend. The younger children in the ballet school danced in their production of "The Little Mermaid." Clare's petite ballet class were little fish, and they were so cute! Clare did a great job - she isn't able to perform all the moves because she has trouble with her balance, but she tried so hard, paid attention, and was not scared by the big stage, bright lights, and scores of faces! Her favorite part was being allowed to wear make-up. She talked for weeks about the make-up! Clare absolutely loves her ballet class. She is all about the music and dancing and girlishness of it. I think it is good for Clare because it helps her with her strength, endurance, and balance without being too strenuous. When Clare took swim lessons (something she also loved), the 30-minute class wiped her out for the rest of the day. Ballet is not like that, so it's a better choice of activity when it comes to Clare's endurance level. She is taking a break for the summer, but will resume ballet in the fall.

Health-wise, Clare is doing well. She had her recent endocrinology appointment, and once again, she has shot up! She has gone from not even being on the height chart to 10% a couple years ago and now she is at 19%. She is still slow on gaining weight, but has become so long and lanky. (Or lean and mean!) We recently went down to Children's Hospital for a renal ultrasound (no results yet - they are checking for any stenosis in her renal arteries as well as any issues with her kidneys because of her continued high blood pressure) and will go back to Children's in a few weeks for some dental work. Clare only needs a couple cavities filled, but because of her complicated cardiac history and increased anesthesia risks associated with Williams syndrome, the pediatric dentist wants her dental work done under sedation at Children's (they always want that cardiac OR back-up, just in case).
We are finally attending our first national Williams syndrome convention this summer in St. Louis and are so excited to go. Over the past five years, we have met many local families and been at gatherings with multiple children with Williams syndrome. I cannot imagine how it is going to feel to be surrounded by hundreds of people all raising children with Williams syndrome. We will also finally have a chance to meet friends in person that we have only chatted with online or on the phone for years. We are going to make a vacation out of it and visit both of my sisters, my grandparents, my grandfather, and aunts, uncles, and cousins along the way and in St. Louis. It is going to be one fun trip!

Construction Photos

2010-06-11T14:04:00.011-04:00

After two months, our addition will be done in a couple weeks. Like pregnancy, it seems like the new addition would take forever, but now, looking back, I cannot believe how far we have come and that it is almost done. Other than our garage doors and row of small windows above the doors (which are on special order), the outside is complete - windows, siding, addition roof, new roof on house, doors, retaining wall, etc. Our driveway and sidewalk are being hot-topped as I type, and we are excited to start being able to park the cars in the garage at night. (We've done it a couple times to try it out, but it's hard to get over the lip where the driveway should be.)

Inside, the contractors are dry walling. Not my favorite part of the construction as it means the huge mess has moved inside my house. But the dry walling means we have been able to do some of the other exciting parts, such as choosing our paint colors, flooring, and light fixtures. We are definitely getting closer to the finish line!

April 13 - Our house before construction began.

April 13 - The excavator begins digging.

April 28 - Framing begins.

May 11 - Working on the roof and siding.

May 28 - Master bedroom.

May 28 - Master bath.

Simon

2010-06-07T18:49:00.009-04:00

I don't know if it's a blessing or just cruel that I forgot how much worse 3-year olds can be than 2-years old! Clare's development has not been typical in so many ways, so it's been four years since we've had a typical 3-year old in our house. And Simon is giving us a run for our money!

Simon is a talker. And a charming talker at that. He can melt your heart with his sweet little face, big brown eyes, and words of love. His catch phrases right now are "I have a joke" and "I have a plan." They are then followed by some sort of imaginative nonsense that only a 3-year old can invent. The kind of nonsense that always elicits a dutiful smile or laugh from a doting parent, even though you have no idea what they're talking about. However, the talking is also non-stop, and Simon chatters right through everything. Not only events and activities (Mass, plays, school events, the grocery store, an hour's car ride) but any form of discipline, instructions, or other conversations in general.

Simon has also become the Master of Button Pushing. In two ways. The first is the obvious way in that he wants to be in control of every button there is in his environment. All the light switches, the TV power, the switch for the garbage disposal, elevator buttons, handicap door-opening switches, the dishwasher. If there is a button, Simon demands that it is his right to push it. Which leads to the second way in that he knows how to push the buttons of his older brother and sister. Many times these two button pushings collide, and he will race Jamie to be the first one to push the elevator button at the doctor's office (I have yet to discover the allure of this coveted prize - the pusher of the elevator buttons - but since we are at the doctor's frequently, it is a weekly battle.) Simon knows just how to make Jamie and Clare angry or upset. He may be the smallest of the three, but he can hold his own when it comes to the mental games of sibling rivalry.

Having a 3-year old in the house is challenging and, quite frankly, mentally exhausting at times. Simon very rarely naps anymore, yet there are days when he needs to. But if he does nap, then he is awake until 8-9pm, and I can't have that! (We have always had a fairly strict 6:30-7pm bedtime. I know many people think that's so early, but it works great for our family and my sanity.) Yet, in so many ways, Simon is the sweetest of my children right now. He is still very snuggly with me (Clare is, too, but Jamie is starting to outgrow that), and still often climbs into my lap. He loves to be read to and would read books all day long. He cannot get enough of books, and I love that about him! Simon has also taken quite an interest in doing what he calls "schoolwork" - coloring or preschool workbooks. He is very smart when it comes to numbers, colors, shapes, letters, and just loves doing activities involving those things. He is ready for preschool in the fall, and although he can still be clingy and a little shy at times, I know he will love it!

It is fascinating to watch Simon's imagination develop. He reminds me so much of Jamie at that age. He loves to play with his dinosaurs, Jamie's superheroes, and Clare's princesses. He will play quietly by himself in the playroom downstairs for an hour (and actually playing with toys, not getting into stuff in the storage room or Shawn's office, like Clare would be!). In many ways, I can trust Simon more than I can trust Clare. We may have our challenging moments, but, at the end of the day, when he puts his still-chubby little arms around me and gives me a big squeeze and tells me I'm a "silly head," it's all worth it!

Excuse List for Blog Neglect

2010-06-07T18:37:00.003-04:00
1. Unseasonably sweltering late May/early June weather zaps my energy.
2. Men swarming my house doing various projects causing all kinds of messes.
3. Using whatever energy the heat has not zapped to clean up the above messes at the end of each day or I go nuts.
4. Three soccer activities per week.
5. Getting Jamie's migraines under control.
6. Scheduling dental appointments and renal ultrasounds at Children's Hospital for Clare.
7. Finishing end-of-the-school-year first grade project on Arlington National Cemetery, Tomb of the Unknown Soldier, and Memorial Day.
8. Husband away in Boulder, Colorado and Atlantic City (business not pleasure).
9. Keeping the toddler from killing herself on the playground. Violet loves the slides and stairs and ladders, but has no common sense.
10. Jamie's production of "The Emperor's New Clothes" and now Clare's ballet recital of "The Little Mermaid." Rehearsals, rehearsals, rehearsals.
11. Choosing shower, tub, tile, paint, doors, windows (exciting to be at this stage, but lots of decisions!).
12. Special Olympics Youth Athletic Program and its big Summer Games next week.
13. Throw in some fun random activities like hiking Quechee Gorge or impromptu weekend in Portsmouth.
14. A 3-year old who no longer naps, but desperately needs to. (Simon, you're ruining my quiet time!)
15. The thousand of other little daily chores to keep this house running (somewhat) smoothly.

Welcome to Neverland

2010-05-18T20:06:00.007-04:00
Our Neverland Birthday Party

Shawn created a treasure hunt complete with a treasure map puzzle. The hunters (known as the fairies and the Lost Boys) had to answer questions about the movie Peter Pan. If they answered correctly, they received another piece of the map. When they fit the piece correctly into the puzzle, it showed them where to go for their next clue. The final piece directed them to a treasure chest - full of swords and fairy wings. Shawn and I conceived the ideas for the games together, but he designed them all. He needs to go into the party planning business!

Jamie helps Simon open presents. It was an unseasonably HOT day for the first of May, and everyone was glad to have a chance to cool off inside.

Another party game was tossing stuffed crocodiles at Captain Hook's pirate ship. The girls all looked so sweet running around with their brightly-colored wings on. (And the boys were warned many times about the foam swords! Perhaps those should have been handed out at the END of the party!)

Simon and Clare blow out the candles on their Neverland cake. (Which was my baby, and came out quite cute, if I may pat myself on the back!)

I bought these t-shirts off eBay for the birthday girl and boy to wear.

Violet

2010-05-12T20:10:00.005-04:00
Violet turned 15 months old at the end of April, and I intended to write a post to commemorate that milestone, but it took me three weeks to do so! (And now another week to actually finish it, since Violet will now be 16 months old on Friday. How life is flying by!)

Even though my four children are each only about two years apart, I tend to forgot much about certain stages of their development until I experience it again with the next child. In Violet's case, however, she has been my earliest walker, runner, and climber, so at times, I feel like I am starting all over again with this parent stuff. The child is all over the place, but with almost no common sense (or fear)! Jamie and Simon were both around 15-16 months when they started to take steps and were fairly cautious, and Clare was almost 2 1/2 years old (and extremely cautious). So to see this little scrap of a girl literally running around still amazes me. She looks too tiny to be doing that! And not only running around, but having definite ideas of what she wants to do with her time. Her current favorite pastime is to push the baby doll stroller around (usually with a baby doll in it, but she does not mind if the seat is empty). What she insists on is having some sort of "purse" dangling off her arm while she does so. The purse can range from anything as random as a stuffed animal monkey purse to one of my red Target reusable shopping bags. If that purse falls off her arm, watch out - she is one ticked little girl!

While Violet has been the most advanced of my children when it comes to gross motor skills, she is not a talker like Jamie and Simon were (and still are!). Jamie had about a dozen words at a year old, and I vividly remember at his 18-month appointment, the pediatrician asked me how many words he had. I answered that I stopped writing them down when we reached 100 words, so I wasn't sure. The pediatrician laughed and said that he typically looked for between 12 and 30, so Jamie was doing just fine! Jamie being my first, I had no idea how verbally-advanced he was. Violet has no actual words yet, but she is a babbler, a shrieker, a giggler, and clearly understands everything we say to her (definitely not a quiet child!). She is still very attached to me, but has quite the silly personality once she warms up to other people. Violet is at a delightful age, and we all love watching this little spunky person doing her thing!

Snatches of Conversation, Part 2

2010-05-10T12:35:00.002-04:00
I love that I never know what is going to come out of children's mouths! Every day is an adventure.

(Yesterday, after dealing with four grumpy kids the majority of the day, Shawn gave them a talking-to about their behavior and Mother's Day. Then they came up to me one-by-one.)

Simon: Sorry, Mommy. Happy Mother's Day! I love my new dinosaur bucket in my bedroom.
Jamie: I'm sorry, Mom. Happy Mother's Day! I love you. (with a big hug)
Clare: I'm sorry you are mad at me.

(This morning as I am trying to do something with the rat's nest of Clare's morning hair.)

Me: Clare, how about if I do your hair half-up?
Clare: (Now getting upset) I don't want happy hair! I want angry hair!

Snatches of Conversation

2010-05-05T08:14:00.001-04:00
(In the car)

Clare: Violet, stop hitting me with your baby doll!

Simon: Just deal with it.

Happy 3rd Birthday, Simon!

2010-05-02T19:03:00.002-04:00
Simon celebrated his third birthday yesterday (pics to follow because Blogger and my laptop do not get along). Since his birthday landed on a Saturday this year, we had a big party on his actual birthday (and combined celebrating Clare's birthday, which was a month earlier) with family and friends. One of Clare's favorite characters is Tinkerbell, so we decided a Peter Pan/Tinkerbell/Neverland party was a great theme for the two kiddos. Our backyard was hopping with fairies and pirates!. Simon is the last birthday of the calendar year in our family, so he has been waiting patiently (and sometimes not-so-patiently) for the big day.

Simon has been congested and coughing for a couple weeks now. Since it coincided with the explosion of tree pollen and no one else was affected, we chalked it up to allergies. It could still have been allergies, but it settled in his chest, and come late afternoon, he spiked a high fever. Poor birthday boy! I ended up bringing him over to our Urgent Care clinic last night after the party. There was literally no other patient there while we were there, so Simon, Violet, and I were treated like royalty. Once the nurses and receptionists found out it was Simon's birthday, they hyped it up even more. Since his oxygen stats were a little low, his fever was 103 on Motrin, and his chest sounded raspy, Simon had a birthday chest x-ray, which showed that he now has bronchitis. After 24 hours on his antibiotics and nebulizer treatments, he is fever-free today and feeling so much better. He still has a barky cough, but that could linger another couple of weeks.

So that is why his birthday post is a day late! Simon was still able to enjoy most of the party, and he spent a lot of time today enjoying the plethora of dinosaurs and trucks that have now invaded our house. Happy Birthday to the sweetest 3-year old around!

Chance Encounter

2010-04-22T19:22:00.004-04:00
Today was allergy clinic day, one of my least favorite activities in the world. Not only because my son has to receive two allergy shots and he usually has a pretty substantial reaction to the serum injected (the arm that receives the tree serum usually becomes red and swollen in a 2" diameter around the injection site), but because the medical receptionists are less than friendly to my large, often loud, brood. They obviously never had to wait in an unfriendly waiting room for at least 30 minutes post-allergy shots with four children. No amount of toys, books, snacks, or admonishments can keep four children from wanting to play, laugh, and possibly even run around for that amount of time. And today was no exception.

After staking our claim to a circle of chairs and cornering the only wooden beads toy in the waiting room, we began to wait out our 30 minutes post-injections. The kids scored about 10 stickers from various receptionists (they have learned to bypass the Allergy counter and scope out the counters at the other end of the waiting room, hitting up the sweeter women who work at Internal Medicine and Family Practice). Clare went to the bathroom twice. The most sour-faced receptionist spoke to me once. ("I just wanted to let you know that the doors open out, so I don't want your children playing in front of them in case they get hit." Which they weren't, and which we know since we've been in the clinic about a thousand times.) I had to bring Clare back to our area twice after she stared down two adults (both texting on their phones, which fascinates her).

After bringing Clare back the second time, we saw them walk in. Another mom with her four kids in tow - two girls, two boys. And I knew instantly that there was something "up" with her youngest daughter. (No, I am not politically correct.) They sat in the next group of chairs. This mom's three oldest (all probably older than my kids) sat dutifully on their chairs while waiting for their appointment to be called. But the little girl made a beeline for us. Specifically for me and Violet, who was clutching one of her baby dolls. She was fascinated with Violet's baby doll. I helped her and Violet work out an arrangement over who got to hold the baby doll when. That's when I realized that Clare was standing in front of the other mom, giving her that big wide-eyed stare. I called Clare back, and the other mom came over, too. I simply stated, "Clare has Williams syndrome." Now I am not one to make those pronouncements to random strangers. I have never felt the need to broadcast that information. Even when I know people are wondering what's up with my child or ask questions, I rarely bring it up. It's not that I am embarrassed or I feel like we have something to hide. I just don't feel like it's relevant or makes a difference sometimes. Clare is who she is. But with this mom, I sensed a kindred spirit instantly. And I was right. Her reply was, "Bridgette has Noonan syndrome."

You see these other kids and their families sometimes. On the playground. At the mall. In the grocery store. And I always wonder. I wonder what syndrome has affected their family. I wonder what their journey has been like to get to where they are. I wonder if they sometimes feel all alone in this world. I wonder if they look at my child and wonder the same things about us. I am glad I said something today because it gave me the chance to talk with another parent. To exchange some details about our daughters' syndromes (Noonan syndrome is also characterized by pulmonary stenosis) and even gain some new insight into other forms of therapy (she told me about pet therapy). Just to have the reassurance that we are not alone in this journey, and there are others out there who understand.

Beginnings

2010-04-20T19:51:00.003-04:00
The addition project has begun. It is moving V-E-R-Y S-L-O-W-L-Y in my opinion, but we've had some rain, and now I think they are waiting for the building inspector to approve the footings before the excavator returns to backfill. Right now, our front yard is half-covered with lots and lots of dirt. But I can look out my kitchen door (which remains securely locked for the time being since it drops into a big hole) and kind of visualize what it's going to look like. I can't wait for the framing stage to see the addition take shape.

Spring is here to stay in NH, and our wall garden is growing. (Although we did have snow one morning last week!) All the bushes from last year survived the winter and are coming back up and the new tiger lilies that Shawn planted at the end of summer are flourishing. We had gorgeous hostas in the front yard that were in danger of being excavated, but Shawn was able to get those unearthed and transplanted to around our deck. I hope they survive their move and bloom this summer.

Jamie's travel soccer began two weeks ago, and I am already exhausted. Two evening practices and one weekend game per week is a bit much, in my opinion, but I have to admit that his soccer skills are taking off. Jamie loves it - soccer is definitely his sport. He played two seasons of baseball and did not want to do it this year. Too much standing around and waiting! He is a kid on the move. We are going to try to catch a Revolutions game this summer (New England's professional soccer team). I never thought I would be a soccer mom, but here I am. Shawn and I ruled that the two older children are allowed a maximum of two activities or we would go crazy. So Jamie is doing soccer and his school's play, and Clare is doing ballet and the Special Olympics Youth Athletic Program has started up for its spring session.

We are at that time of year when everyone has their doctor's appointments. Jamie and Clare both have follow-ups with the endocrinologist in the near future (Jamie's is tomorrow with blood work... yuck), all four kids have their pediatric visits (annual physicals for the older three and Violet's 15 months well-baby visit), and Clare had her work-up with the new cardiologist a couple weeks ago (more about that in a moment). Other than Violet (who is healthy, walking, babbling, doing everything she should be doing and nothing she shouldn't!), I have a list for each child of what I want to discuss. Jamie's headaches have gotten out-of-control again. He has had a headache or migraine every day for almost a week now. His migraine medication does not always work, and I feel like every morning he needs Tylenol to even get out of bed. His allergies seem to be under control now that he is on allergy shots, so I can't blame it on that. Sometimes I feel that his week is too stressful between school all day, homework, school projects, and soccer, but it is still not normal for a 7-year old to complain of a headache on a daily basis and end up vomiting fairly frequently. I am ready to sit down with the pediatrician next week and figure out where to go from here. I think that Simon is starting to develop allergies as well. He had eczema as a baby like Jamie did, and there is a link between having eczema and developing seasonal allergies. (Shawn, too, has battled eczema and has allergies.) Neither Clare nor I have ever had eczema and we are not affected by allergies. Thankfully, Violet has never had eczema either, so hopefully the girls are out of the woods when it comes to seasonal allergies! Ever since the tree allergens have started full-force (and where we live is on a high level right now), Simon has started with the runny nose, congestion, and shiner eyes. I am giving him a small daily dose of Zyrtec, but can't help but wonder if we're just going down the same road as we did with Jamie. Jamie did not have his allergy testing until age 5, and I don't know if they can test Simon sooner.

I took Clare down to Boston Children's Hospital two weeks ago for another echo, EKG, and to meet the new cardiologist. It was a 9-hour trip (3 hours of lovely Boston traffic and 6 hours of hospital time), but worth every minute for the hour we spent with Dr. S. Dr. S is a highly-recommended pediatric cardiologist who specializes in cardiac defects associated with genetic disorders and Williams syndrome in particular. The excellent news is that Clare's echo and EKG confirmed what her NH cardiologist had told us. Her main pulmonary arteries have grown a tiny bit and her gradient measurements where her stents are placed are minimal, between 10-18 mmHg. (To compare, when Clare was very sick as a baby, her PA gradients were in the 60s). Clare's aorta still looks fabulous with a pressure gradient of almost zero (pre-surgery, Clare's aortic gradient was 125 mmHg - this means that if Clare's systolic blood pressure reading was 100, the actual systolic pressure going across her aorta would have been 225 - you do the math, not so good!). This just illustrates how "healthy" Clare's heart is now compared to where we were five years ago. Clare's only real problem right now is that her distal pulmonary arteries are hard to see on an echo and measure, and those little arteries are still small and narrow. The only way (other than a cath) for the cardiologist to get an idea of how those pulmonary branches are doing is through a lung scan and measuring her right ventricular pressures. Her last lung scan in October was excellent (which means the blood flow to each lung is fairly even) and, at this appointment, her RV pressures were less than 2/3 systemic. They are creeping up again, since in April 2009, the pressures were less than 1/2 systemic, but for now, they are still at an acceptable level. So, in regards to Clare's pulmonary stenosis, we are going to follow up with Dr. S in nine months for another echo, EKG and lung scan. In the meantime, Clare is still off her blood pressure medication and her readings remain borderline. Dr. S went into a very long, very thorough explanation of why sometimes a person may need a high blood pressure to ensure proper blood circulation throughout their body (an explanation which made a lot of sense to me and one that I had never heard before - this is why we switched cardiologists!). There is a slight possibility that Clare could have renal stenosis (narrowing in the arteries leading into her kidneys), so the next step is to have a renal ultrasound in a couple months. In the meantime, we will continue her off her blood pressure medication and continue to have the school nurse take measurements once a week and then fax the measurements to Dr. S. So there is your medical lesson for the day. Whew!

Fresh Air

2010-04-07T20:14:00.003-04:00

We are stagnant during the winter - maintaining some semblance of preserving our sanity while surviving the cold, snow, wind, flu, colds, and stomach viruses. But now that spring is around the corner, there is lots of change in store for us.

When we bought our house four years ago, Shawn and I discussed adding a double-car garage. We have the space for it, but always envisioned this as a project down the road. When we were pregnant with Violet, we dreamed about how awesome it would be to, not only have the garage, but add a master bedroom and bathroom on top of it. Once Violet was here, in her own room, and Simon moved into the bedroom with Jamie and Clare, we thought wouldn't it be wonderful to cut our existing master bedroom into two bedrooms. Then we could have a boys' room, girls' room, nursery (you never know!), and a guest room. As the kids get older, they could eventually have their own rooms. Dreams, dreams, and more dreams. Some dreams do come true! Any day now, they will be breaking ground for the addition. It's going to have everything we wanted - two-car garage, master bedroom, walk-in closet, master bath with a jacuzzi tub (that's mine!), mudroom, and our old bedroom will be converted into two rooms. We are blessed in so many ways, but we also have so many challenges in our life and have been thrown so many unexpected curve balls, that I am still in some disbelief that this is actually going to happen just like we dreamed it would.

We will be registering Clare for kindergarten next week for next fall. There is still so much uncertainty about exactly how this is all going to go. Clare's preschool teacher has been awesome discussing it with me as things come up, but I am such a planner and organizer that I hate the unknown part of it all. We, as parents, have definitely decided we want Clare to go to our district school, which is one of the best in the district. The only reason why I was not sold on this idea is because the kindergarten program is only a little over two hours a day. Right now, the special education team is planning on including Clare in a typical kindergarten classroom, so I was concerned about her being pulled out for services three hours a week. That's almost a third of her time in class. We could fight to have her placed in a full-day program at a different school, but I don't want to take her out of our district school and then transition her again in first grade. It's so confusing sometimes! You want to make the right decision for your child, but I honestly don't know what the right decision is. I want Clare to be included in a regular classroom, to be with the children she will be in school with for years, to have the chance to make friends. She needs all her special education services, but she also needs to be in her kindergarten class. She can spell her name now (drilled into her! C-L-A-R-E!), but has difficulty forming letters (part of that difficulty with fine motor skills), so she cannot write her name yet. She knows all her colors after months of working on it, but is still sketchy on shapes, numbers, and letters. She has made tremendous progress this year, but I think of where Jamie was when he was going to kindergarten, and Clare has a long way to go. I don't expect her to be where Jamie was at that age, but she is going to be with other children who are, and I just want her to be able to keep up. Clare has loved her preschool and has done so well in her self-contained classroom. I am scared of the unknown of placing her in a regular classroom. This is where the Mommy-protectiveness is kicking in.
Jamie was invited to join a travel soccer team this year. He was asked to play last year and we said no, feeling that six was too young to be on a travel team. After playing a season of outdoor soccer this past fall and currently wrapping up four months of indoor soccer, Jamie has demonstrated both that he loves soccer and that he has soccer skills. When his coach brought up the travel team again, at first we said no. After some thought, though, we decided to give Jamie the choice between baseball or soccer (he has played t-ball the past two springs). Jamie immediately chose soccer. It's a bigger time commitment than we've been used to, but I know it's going to be a great experience for Jamie. He has a terrific soccer coach and will be playing with many of the same players on his indoor soccer team. Plus it forces us to not plead tiredness and get some fresh air two nights a week after dinner and run around!

After watching Jamie play sports for two years, Clare is excited that it's finally her turn to have an activity just for her. She started taking official ballet classes two weeks ago and loves it. To test the waters, I signed her up for a little "Creative Movement" class at the YMCA over the winter. The girls do a little bit of ballet, then basically get to free-dance. She did this class for a few months. She paid attention, took it seriously (for the most part!), and loved every minute of it. Those were my three conditions she had to meet before I signed her up with a ballet studio. I know Clare will not be a ballerina. I know she will not be able to do everything at first, but I was more concerned that she would not be a distraction in the class. Clare did awesome, and I am so proud of her! (Not to mention that she looks so stinking cute in her leotard!) So we signed her up with a local ballet studio for a weekly class. She is in a petite ballet class with other 3-5 year olds and will even be in a show in June. Her class are playing the part of fish in The Little Mermaid. I was able to watch her class perform their little solo (it's literally about two minutes long!) last week, and thank goodness I had a squirmy Violet to also occupy my attention or I would have started crying. Clare was grinning away, doing her moves (don't ask me what anything is called), and so precious! She truly loves her dance.
And thankfully Simon and Violet still go with the flow! (Although Simon has stopped napping, which really ruins my quiet afternoons!) Some days are spent running around like crazy with the older kids' activities, that I cherish the calmer times I have with my little two. They are so sweet and their needs are so simple! I know our calm days are numbered in the near future once the addition gets under way!

My Girl is Five Fingers!

2010-03-31T12:32:00.006-04:00
Happy 5th Birthday, Clare! It is unbelievable how much your life can change in an instant, and ours surely did five years ago today at 8:52pm! You have brought us so much joy, happiness, and love these past five years. All our challenges, struggles, bad days, and rocky roads have been worth every second of having this sweet, often silly, person in our lives. We love you, Clare Bear!

Dress-Up Diva

2010-03-19T19:56:00.005-04:00
Clare loves to ham it up for the camera and has certain poses that she strikes. Auntie Erin gave her this beautiful dress for Christmas (with a matching baby doll dress), and Clare had fun prancing around in it.

Leprechaun Traps

2010-03-17T19:50:00.006-04:00
Even though we don't really celebrate St. Patrick's Day in our house, Jamie and Clare came home from school on Monday and Tuesday with ideas of setting "leprechaun traps" throughout the house. Jamie hoped that he would be able to catch a "real live leprechaun" (reporting that one of his classmates claimed he has a friend who caught one), and Clare sincerely hoped that, if they did not catch a leprechaun, they might at least catch some chocolate coins.

Jamie set about last night with his traps. His most elaborate trap involved placing a fake coin in the bottom of a tall cup. He then leaned a ladder against the cup and placed a sign on the outside that read: "Gold inside!" The sign would entice the leprechaun to climb the ladder, then he would fall into the cup attempting to reach the coin. Another piece of paper acted as a cover so the leprechaun could not escape. Genius! As Jamie set his traps, he worried in all seriousness that he "hoped the leprechauns knew English." I assured him that, to the best of my knowledge, leprechauns were typically Irish folk and did indeed know English.

Alas, that tricky leprechaun (or "Lucky the Crafty Leprechaun" as his mocking return note read) got the best of the kids. He not only took Jamie's coin, but was able to escape the trap and vanish again. He was kind enough, however, to leave some chocolate coins around the house, which did appease the leprechaun-hunters.

My Old Friend Spring

2010-03-10T12:08:00.002-05:00
Spring is coming. The birds tweet loudly in the morning, the temperatures are rising into the 50's some days, and there are shoots in my garden starting to break through the dirt and rocks. We've had some pleasant afternoons playing in our yard and street. Everyone is breathing in the fresh air, and I am hoping that winter is truly over and that the fresh breath of spring air will push the rest of the nasty germs away.

I am looking forward to spring, but there is always some illness that strikes our family at the end of March/beginning of April every year without fail. 2007 and 2008 both brought stomach bugs that hit everyone and landed Clare in the hospital for a couple days. In 2009, we were hit by a stomach virus again, but Clare thankfully avoided the hospital for that one. Instead, she was having numbness and tingling in her arm and her A-V fistula and aneurysm were diagnosed, which resulted in her summer surgery. 2010 is going down the same path unfortunately. Our house has once again been hit by some nasty stomach bug (why do we seem to avoid it all winter and then get hit right when the sunny days are beckoning us?). So far, Violet had it fairly easy, I had a severe case (with a few hours in the hospital for dehydration and severe abdominal pain - nothing that a little IV fluids, morphine, toradol, and zofran couldn't cure!), and now Simon has it (he's sleeping it off as I type). I am praying that Clare, Jamie, and Shawn escape unscathed, but I just don't think that's going to happen. Thankfully, it's a short stint (about 12 hours), but it's rough. I am praying that if Clare does come down with it, she can get over it quickly and without becoming dehydrated.

Tomorrow is Clare's six-month cardiology appointment. I have been so busy being sick and taking care of sick kids that the butterflies have not set in yet. I know they will be there at 8am (the time of her echo). I wonder what tomorrow will bring. The school nurse has been monitoring her blood pressure twice a week and her numbers have been slowly creeping up. Add that to the fact that at Clare's last appointment, the cardiologist talked about possibly doing a cath in the near future just to see what was going on. Her last lung scan was good, so a decision has been held off until tomorrow's appointment. I always count my blessings, and the fact that it has been 2 years, 7 months since Clare's last cath is a HUGE blessing. I never thought we would get to this point, but here we are! So those little butterflies tomorrow better be good spring butterflies!

My Guardian Angel

2010-02-16T18:39:00.002-05:00
Shawn is usually out-of-state two days a week. On those days, it is up to me to get all four kids out the door at 7:15am to drop Jamie off at school. These mornings are typically somewhat chaotic - the only one who is consistently dressed and breakfast-fed with teeth-brushed is Jamie. The remaining four of us are usually in various stages of pajamas and I have doled out easy-to-grab morning snacks and sippy cups to tide the younger children over until we return home.

This morning was no different. I woke to my alarm and checked out the window to see what the weather looked like. We had been forewarned of a snowstorm, but no snow had come overnight. The driveway and street were clear and, equally clearly, no snow had fallen on our brown grass. I jumped into the shower and then began the wake-up-children-and-out-the-door shuffle. When I arrived at Jamie's school, I pulled up a little past the front door, which is the polite protocol at Jamie's school, so other parents can pull up behind you to drop off as well. We were running later this morning and at the school at 7:39am (they are supposed to be in by 7:40), so I was not surprised I was alone in front of the school. But I pulled up farther anyway in case another car came after me or the school bus was later as well. Jamie scrambled out of the car. I watched him go up the steep steps to the front doors, then lost sight of him as he entered the building. I rounded the corner taking my normal driving route back home.

As I neared the next intersection, though, I had an uneasy feeling. Something just crept into my mind and unsettled my stomach that something was not right. I could not pinpoint what it was, but I just didn't feel right. I have dropped Jamie off at school about twice a week for six months now, and this is the first time I have ever felt like this. As I turned right at the next set of lights to head home, I thought about driving around the block back to the front of school. I argued with myself that I was being neurotic, but I couldn't shake that "not-right" feeling. So despite feeling somewhat idiotic, I looped onto the alley-street right along Jamie's school. This street runs past the rear parking lot of the school. As I drove past, I saw that the parking lot was deserted, which is unusual. I turned in front of Jamie's school again and as I pulled in front of the building, that's when I saw him in the corner of the stairs. Not inside the building as I had thought, but tucked into a corner where I could not see him from my drop-off spot on the street, vainly ringing the school's doorbell over and over. When Jamie looked up and saw me coming out of the van, he ran down the stairs. With tears in his eyes, he said that the school was locked and no one was answering the bell. I frantically tried to figure out what I had missed. Our city was having a State Senate election that day, but I didn't remember the Monday notice saying anything about school being cancelled. Jamie's teacher's father had passed away the previous week and his funeral Mass was being held today, but I doubted the entire school would be closed for that. Another mother pulled up behind me with her two girls, but she didn't know why the school was closed either. Since there was nothing to do but go back home, I called a friend on the way home whose children also attend the school. She explained that it had been on the news that morning that most of the towns in our area had closed schools because of the impending snowstorm.

In the three years my children have been in school, never have the schools closed in case we get snow. There have been many mornings with snow on the ground where not even a delay has been called. So I did not feel silly about assuming there was school when there was no snow overnight and it was not snowing in the morning (and incidentally, it did not really start snowing until close to 2pm anyway today and didn't start to accumulate until closer to 3pm, when school would have been done, but I digress). But I still feel sick to my stomach when I think about what if I had just driven home. At drop-off, I usually see Jamie enter the building (there is always an older student on the inside who has door duty in the winter to open the door). When Jamie disappeared from my view, I assumed he had gone into the school. All I know is that our guardian angels were looking out for us today. I feel sick when I think what would Jamie have done if I truly did just leave him outside a locked building in the city? Where would he have gone? The central fire station and police department are right down the street from his school. Would a 7-year old have the wisdom to walk down there? Would he have waited on the steps in agony - scared that the door was locked and his mom had driven away - until that other mother arrived? It makes me want to throw up. I have thanked God so many times today for giving me that unease, that certainty that something wasn't right, even though I didn't know what it was. That I trusted my gut and not my brain telling me I was being stupid and turned around. That I learned an essential lesson today to be absolutely 100% positive that Jamie has walked into his school and who cares about polite protocol and pulling up to the corner and other parents being ticked off that I was parked right smack in front of the doors. I thank God that He watched over us today and kept us safe. It turned out to be a fabulous day. Not a very good beginning, but it turned out to be one of the best days we've had in a long time.

Penguin Plunge

2010-02-08T12:24:00.004-05:00

Thank you to all who generously donated or came to witness Shawn and his dad Mike participate in the Penguin Plunge for Special Olympics. Together, they raised over $2,000! It was a chilly day (25 degrees, and that is NOT counting the wind, which there was plenty of), but no complaints from Shawn and Mike as they ran into the Atlantic Ocean. We are so proud of them and what they were able to accomplish to help thousands of kids, like our Clare. Thank you all! (Shawn is in the black shirt and Mike is wearing the sweatpants with suspenders - don't ask!! There were all kinds of creative costumes that day!)

End of the Week Daybook

2010-02-05T12:49:00.008-05:00
Outside my window … oh my goodness, it's so cold. The snow has deceptively melted away, but winter's not done yet.

I am thinking … eventually Simon will figure out that he can get in and out of his new toddler bed by himself. In the meantime, I am enjoying the fact that he doesn't!

I am thankful for … the generous support of family, friends, and strangers who pledged in honor of Clare for the Penguin Plunge, which benefits Special Olympics. Shawn and his dad raised over $2,000 and are looking forward to taking the plunge on Sunday!

I am reading … Handle with Care by Jodi Picoult, and I am not sure if I like it. It's the story of a mother whose daughter has a rare disorder. The mother is suing her OB in a "wrongful birth" suit, claiming that if she had known ahead of time that her child would be born with this condition, she would have aborted the pregnancy. It is not difficult to read emotionally, I am just so against the premise of the lawsuit. But it is interesting.... we'll see how it turns out.

I am hoping … everyone's noses stop running already!

On my mind … special prayer intentions. I am beginning a Novena today.

We’re learning … how to spell our name. Go, Clare!! (She proudly recites it daily.)

Noticing that … people say the stupidest things. (As in, "I am blessed with three healthy kids, so I don't want to jinx myself with a fourth.")

Pondering these words … "We must hang together, else, we shall most assuredly hang separately." -- Benjamin Franklin

From the kitchen … turkey filets wrapped in bacon, baked sweet potatoes, and green beans. Shawn is coming home tonight from NYC, and I am looking forward to cooking grown-up food.

Around the house … the contractor came a couple weeks ago to look at where we want our addition. Now we are waiting for rough plans and numbers.

One of my least favorite things (a new category I am adding!) ... when my darling children refuse to nap, then act like beasts for the remainder of the day.

One of my favorite things … the smell of baking cupcakes in the house.

A picture I am sharing…

Jungle animal cupcakes for Jamie and Violet's joint family birthday party.

Plans

2010-02-04T13:34:00.006-05:00
Even though the new school year is seven months away, registration is going on now so we are thinking ahead. We have decided to send Simon to 3-year old preschool. He has been watching Jamie and Clare go to school for two years now and asks when his turn is coming. He is one smart, outgoing kid, but in a structured setting, he turns into a statue. He has no problem leaving me (does great in the childcare room at the gym, loves playdates), but does not participate when it's something organized. So I think morning preschool twice a week will be a good start for Simon. I took Simon with me a couple weeks ago to visit the school and register (it's the same school where Jamie attended preschool and kindergarten). Now he asks me daily when he is going to school. At first, I told him when he was 3, but now he thinks he will go on his third birthday. So I have changed my answer to "after the summer." I don't think Simon has a clue what that means, but it satisfies him!

Clare will begin kindergarten next year in our local school. We don't formulate her IEP for next year until June, but kindergarten registration starts next month. I am not sure if we get to decide between morning or afternoon, but I am aiming for morning. I feel like we just finished Clare's transition from Early Intervention into preschool, and now we're going to start transitioning from preschool into kindergarten. And with that comes a whole new list of questions and decisions. Will Clare be included in a regular kindergarten classroom? If so, will she be pulled out for services? What services will she receive? Should we aim for an extended school day? Does she need an aide? If we decide to bus again, will she be on the big school bus (in which case, absolutely not!) or still on the small bus? Is Clare ready for kindergarten? Am I ready for this? So many questions and no answers yet.

Clare has been off her blood pressure medication for two months now. She had one blood pressure reading at the endocrinologist's office which was quite high, but, other than that, her pressures have been pretty good for Clare (and almost comparable to her pressures on the meds). The school nurse takes her blood pressure twice a week for us, and we follow-up with her cardiologist in March for her six-month workup (echo, EKG, etc.). I have to say I am feeling very positive about all this. At first, I hated the idea of taking Clare off her meds. She has been on beta blockers since she was seven months old, so stopping cold turkey was scary. But it seems to be going well, and it's been very freeing (for me) to be down to only three medications a day. I always get anxious right before her cardiology appointments, though, so I know the jitters will return! In the meantime, Clare is doing well.

Happy 7th Birthday, Jamie!

2010-01-30T19:31:00.003-05:00

My baby is 7 years old today. My first baby, that is! Happy 7th Birthday, Jamie!

Everyone is still in some stage of a viral cold, so we had a low-key day. Jamie begged for a present first thing in the morning, so we gave him the magic kit we bought him. He was thrilled and spent a good majority of the morning practicing then performing tricks for us. Jamie chose to go to our favorite Mexican restaurant for his birthday celebration, so we did that, followed by ice cream cake, and more presents. Jamie is at a great age where he is so interested in how the world works. He is fascinated with outer space, so Shawn and I got him a telescope for his big present. Jamie loved it, and he and Shawn bundled up against the single digit cold to view the full moon. It was a cloudy night, so they are making plans for another star-hunting night in the (warmer) future.

Happy 1st Birthday, Violet!

2010-01-21T19:44:00.008-05:00

Our sweet baby girl is one year old today! Even though she is Baby #4, every milestone is such an excitement in our household. We never get tired of celebrating each one. Jamie, Clare, and Simon get even more excited than Mommy and Daddy, if that's possible!

We decided that Violet wanted pancakes, grapes, and bacon for her birthday dinner. (Pancakes being her favorite food and a dinner that everyone would eat - okay, I did make a cheddar and tomato frittata for the grown-ups.) Violet eagerly dug into her pink frosted cupcake. No hesitation there. She is our most advanced one year old when it comes to gross motor skills, deciding that her birthday was the perfect day to demonstrate that she can go up the stairs. Thankfully I caught her when she was only on the third stair because she does not know how to get back down other than just leaning back and hoping someone catches her! It was so much fun watching her go crazy with all the exuberance in the room as she opened her presents. She was everywhere! Violet LOVED the baby doll that Jamie, Clare, and Simon picked out for her. Baby dolls are one of Violet's favorite toys right now - she crawls around the house carrying one a good portion of the day. This birthday present is her very first baby doll (Clare has been generously loaning hers out). My sister Christina sent an adorable dress and hat - isn't that hat precious? I have a feeling it will be a part of her one year professional photos. Violet received a walker/ride-on toy from Shawn and I, which she also loved. She is so close to walking (stands alone and has taken two steps so far). She was zooming all over the living room with her new toy. I have a feeling it will be the push she needs to walk on her own. Then it converts to a riding toy, so she can keep up with her older siblings.

It's been a crazier-than-normal week in our house. We started off with a huge snowstorm on Monday. Simon has decided this week that napping is not for him anymore. And it really was not a good week for Simon to start this because Clare has come down with the flu - this was her official diagnosis today at the pediatrician's after three days of a fever and horrible, bronchial cough. She is now on antibiotics, Tamiflu, Tylenol, and nebulizer treatments. Jamie has had two migraines, and Shawn was in Philadelphia for two days. And, of course, while Shawn was in Philly, we were blanketed with more snow, so I had my once-a-year crash course in running the snowblower. After all that, to have my baby girl turn one and have a fun little birthday party this evening was such a bright spot in an otherwise not-so-good week!

Happy Birthday, Violet Grace! We love you so much! You are a ray of sunshine in our lives!

Taking the Plunge

2010-01-16T19:41:00.004-05:00
S~ Close to five year ago I became the father to a Special needs child. At that time, I will be honest, many things went through my head. Was I ready for this? Is this something I am strong enough to handle? And I have to admit some disappointment. Disappointment in the fact that I would probably never get the chance to walk her down the aisle on her wedding day or see her off to her first prom. These are all selfish thoughts I admit, but nonetheless these were my true feelings. Looking back over the five years, a lot of those fears and concerns are still lingering, however they are minimized by all the pleasure that a special needs child can bring. On my worst days, it is usually Clare, climbing into my lap with her big starburst eyes and a smile on her face telling me I am her hero, or I am her best friend. Those moments are priceless and will elevate any sour mood. So my goal with Clare is to now give her the richest and fullest life I can. It is hard to watch other kids her age pass her by, some losing interest in playing with her because she can't keep up physically or mentally. And you worry that she will grow up with very little friends and confidants. That is why when we found the Youth Athletic Program with the Special Olympics, I knew that here is a place where Clare could be herself, and be surrounded by other kids dealing with the same problems. So that is why I have chosen, and will be accompanied by one of my greatest friends and supporters, my Dad, to support Clare by raising money for the Special Olympics. My dad and I have decided to take the plunge, the Penguin Plunge that is! That's right on February 7th my Dad and I will be plunging into the Atlantic Ocean no matter the weather or temperature. However, we can only do it if we collectively raise $600.00. That is why I am asking for your support, no matter how much you can contribute. Please help me and my Dad support a program that has meant so much to Clare! Thanks!

You can click on the link or the sidebar to the right to donate online with a credit card. If you want to make a cash/check donation, you know where we are!

Taking the Plunge for Clare

Neglected Daybook

2010-01-14T19:27:00.009-05:00

Outside my window … darkness. Which means the Christmas lights have been taken down and Christmas is officially over.

I am thinking … I need to stop feeling guilty over every little thing.

I am thankful for … our beautifully-finished office. To celebrate, I completed Simon's first year scrapbook today.

I am reading … An Echo in the Bone by Diana Gabaldon. Finally!

I am hoping … I can keep this blog up. I think it's days are numbered.

On my mind … I cannot believe Violet is turning one next week. :(

We’re learning … that those meddling kids do always solve the mystery.

Noticing that … all the kids are growing like weeds. Except for Simon. Hmmmm... is he just going to be short or is there something else going on?

Pondering these words … "Ok - too many different words coming at me from too many different sentences." --Michael Scott

From the kitchen … getting out of my recovering-from-surgery-and-then-baking-for-the-holidays fog. I have actually been making dinner - barbecue pulled pork, chicken pad thai, enchiladas. And the kids hate it all.

Around the house … birthdays, birthdays, birthdays.

One of my favorite things … coming home after a long day to dinner already cooking, the table set, and wine poured. (Okay, no wine poured, but it sounded nice.)

A picture I am sharing … The sweetness of stolen candy canes.

"Monday Monday" Daybook

2009-12-14T14:06:00.004-05:00
Outside my window … snow, snow, snow. Winter has finally come to stay in New Hampshire.

I am thinking … that Thomas the Train is the dumbest show. Why does Clare like it so much?

I am thankful for … car insurance and that the driver who hit my car last week actually had some. I am sorry I doubted him.

I am reading … City of Bones by Cassandra Clare. (And still finishing the other two books - now I have a downstairs book, upstairs book, and rocking chair/nursing book - such a geek.)

I am hoping … (selfishly) that Shawn chooses to drive three hours home from Connecticut tomorrow to drive three hours back the next day.

On my mind … whether or not it is vanity that I want to have my Lasix surgery touched up. Ten years post-surgery, I really need to wear my glasses full-time again, but I really don't want to. I sound like a little kid. I don't wanna! I don't wanna!

We’re learning … lines for the school play. Jamie has a small speaking role in The Emperor's New Clothes. Maybe one day Shawn and I will be able to get back into theatre.

Noticing that … I really need a Kitchen Aid Mixer.

Pondering these words … "The winding roads shall be made straight, and the rough ways made smooth." --Luke 3: 5

From the kitchen … Christmas cookies. We've already baked galettes, sugar cookies, and Russian teacake surprise cookies. Peanut butter cookies are next. All cookies from my childhood, so I am awash in memories of Christmases at my parents' in Rhode Island and Granny's in West Virginia.

Around the house … Violet is cruising everywhere now. Nothing is safe, and she has realized that if she stands on her tiptoes, she can reach even more stuff!

One of my favorite things … my laptop. It's great to be portable!

A picture I am sharing …

Simon and Clare challenge each other, cheer for each other, and love and hate like the best of siblings!

Blood Pressure Check

2009-12-10T19:51:00.003-05:00
Shawn took Clare to the cardiologist this morning for a quick visit, blood pressure check, and EKG. Her EKG was normal and her blood pressure was 102/60, so that's all good. We have not noticed any change in her mood swings or sleeping habits, so we're going to continue Clare off her BP medication for another month and do another check then.

Thursday (Night) Daybook

2009-12-03T13:54:00.006-05:00
Outside my window … our neighbors' Christmas lights across the street. They did a beautiful job, and it thrills the kids every night to look at them.

I am thinking … how funny is The Office! Love it!!

I am thankful for … the unseasonably warm weather today. We had a chance to play outside and go for a puddle and worm walk.

I am reading … At Some Disputed Barricade (still) but added The Shack by William P. Young (a recommendation from Kerry, which Shawn highly enjoyed).

I am hoping … that this does not turn into a winter of illness. Just when everyone was finally healthy, now Violet ran a 102-104 fever all day.

On my mind … what should I eat for a snack?

We’re learning … about the salvation story and how to prepare for Christmas in our hearts.

Noticing that … it's time for a trim.

Pondering these words … "A person's a person, no matter how small." --Dr. Seuss

From the kitchen … gearing up for Christmas baking. Today I made a Banana-Pecan Coffee Cake. A new recipe for me - two thumbs up!

Around the house … we traditionally decorate for Christmas on the First Sunday of Advent, so we have enjoyed our tree, Advent wreath, and Nativity this week. Now we need to work on our village.

One of my favorite things … when I am nursing Violet, and Clare snuggles up with us. She rubs Violet's head and says, "Hey there, little fella." (Where does she come up with this stuff?)

A picture I am sharing ...

I was scrapping photos from last summer and found this one! In so many ways, Clare is such a girly-Princess-girl. And then she's not...

Cardiology Callback

2009-12-02T12:01:00.002-05:00
Clare's cardiologist called this morning to talk about yesterday. He was concerned both about Clare's complaint of left arm pain and her moodiness and change in sleep habits. He is treating them as two separate issues, even though he acknowledges the fact that Clare's complaint of pain could be a call for attention stemming from the mood swings. However, children with Williams syndrome can have pulmonary and/or coronary artery problems that present suddenly, and some of Clare's complaints match symptoms of a greater issue. (And, of course, she does have severe pulmonary stenosis, which was clinically stable as of two months ago.) Again, the cardiologist stressed that he does not believe Clare is having any vascular problems since she has had great echo and EKG results over the past two years, but he never takes any chances due to the nature of Williams syndrome.

The cardiologist also said that mood swings can be a side effect of taking beta blockers, but her former medication has a higher incidence of this side effect than her current medication does. So the chances are that she would have experienced this side effect on her other medication. However, she is on a higher dose now and, everyone is different, so we are going to trial her off her blood pressure medication for one week. If her mood swings improve and her blood pressure is good, we can continue trialing her off the medication for longer. If her mood swings improve, but her blood pressure is high, then she will have to go on something different. If her mood does not improve, then it's not the medication responsible for her mood swings, and he wants her back on the blood pressure medication, regardless of what her blood pressure reading is. (He would rather keep her on a beta blocker right now.)

So.... in a nutshell, we will see how Clare fares this week and go in next week for an EKG and blood pressure check. If there is something funny going on, the EKG should pick up an abnormality. I am so glad that our cardiologist is on top of this stuff! Sometimes I just want someone to tell me what to do so I can stop second guessing everything I do!

Anxiety Over Anxiety

2009-12-01T20:22:00.003-05:00
Anxiety is common in Williams syndrome, but we have not really seen it in Clare. Until today. She definitely has her intense dislikes - fire trucks, fire drills, lullabies, soft Christmas carols - but it comes, she cries, they go away, she stops crying. Occasionally, if we're in the doctor's office or some place like that where she sees the fire alarm light on the wall, she'll ask if there will be a fire drill, and we will reassure her that there won't. But she doesn't obsess about it. She can move on.

I am not a psychotherapist, but it seemed like Clare became fixated on two events, and they kind of merged in her mind. At the end of school yesterday, one of her teachers jokingly asked Clare if she would miss her (meaning until school tomorrow). For some reason, this made Clare sad, and in her mind, she became scared. Then when she comes home, and we get ready for the end of the day and dinner, the reality sinks in that Shawn is away on business (the kids are used to having only me at home during the day, but at night, everyone misses Daddy even more!). So today, Clare cried on and off. She missed Daddy, her left arm hurt, her stomach hurt, her head hurt, her teacher scared her. It went on and on. She was getting to a point where she couldn't function. She couldn't eat breakfast, she couldn't walk upstairs, she wanted to just lay on the floor. I really didn't think she was sick, but she was acting so weird. Her anxiety was manifesting itself physically.

I had no idea what was going on and have never dealt with this kind of anxiety before. I made calls into the cardiologist and the preschool (covering all bases!), then tucked Clare, Simon, and myself into my bed for some PBS viewing. To bring this to the point - her preschool teacher confirmed that nothing had happened at school other than that one innocent joking comment. The cardiology nurse and I talked about her blood pressure med and side effects, so I am still waiting for the cardiologist to call back. And after an hour of vegging out, Clare was back to her normal sunny self and the rest of the day was great.

I've heard the stories of anxiety and Williams syndrome, medications, coping techniques, etc., but always kind of thought Clare wouldn't be like that. And maybe she won't, but maybe she will. I hope that this incident was just a freak thing and not a problem with her blood pressure medication or a preview of things to come. I know we will deal with whatever comes our way, just as we have for the last four plus years. I can still wish it all away!

Rainy Friday Daybook

2009-11-20T07:18:00.005-05:00
Outside my window … pouring rain. I knew this unseasonably-warm, sunny weather would change. It reminds me that I need to enjoy each moment because life, like the weather, can change so quickly.

I am thinking … that I am finally tired of eating Halloween candy. I am in the mood for baking today.

I am thankful for … modern medicine and that my croupy baby slept a little better last night thanks to some oral steroids.

I am reading … At Some Disputed Barricade by Anne Perry (one of my absolute favorite authors and a book I have had for almost a year now waiting to be read).

I am hoping … that Russell on Survivor actually wins the whole thing. I was anti-Russell in the beginning, but I have to admire that guy now - one of the best players in Survivor history.

On my mind … that Advent is fast-approaching. Shawn and I agree that we want a peaceful, joyful Advent season. No frenetic shopping, running around, or other general chaos.

We’re learning … subtraction patterns (Jamie), how to write our name (Clare), counting past 25 (Simon), and pulling up and cruising (Violet).

Noticing that … my house is getting neater and neater every day!

Pondering these words … "If God can work through me, He can work through anyone." --St. Francis of Assisi

From the kitchen … as I said, I am in the mood for baking. I am thinking banana bread and pumpkin muffins today.

Around the house … we're clearing out space for furniture. My dad is bringing us my old childhood bedroom furniture next weekend. It will eventually be in the girls' room, but we need some space for it!

One of my favorite things … my Keurig.

A picture I am sharing …

Jamie in action in the classroom. He is so handsome in his uniform!

A Daybook

2009-11-17T08:34:00.006-05:00
I read about this idea on a blog I follow and loved it. I love having my Clare's Journey blog, but I don't have the time anymore to be as faithful as I used to be. (Geez, why would that be?) So this is an easy way for me to stay connected and keep on recording moments of our life as it whirls around us. I am going to try to do this at least once a week.

Outside my window … it's a gorgeous, sunny, crisp November day. I have not set foot outside this house for an entire week now due to recovering from my kidney surgery. I am looking forward to joining my sister Christina (who with her baby Casey has been helping out around here for a few days) on the afternoon school pick-up rounds.

I am thinking … how blessed I am to have this incredible support system around me who love me, Shawn, and our children so much that they will drop their lives for a couple days to pick up ours.

I am thankful for … a hard-working, family-devoted husband who got up at the crack of dawn this morning to fly to Philadelphia for the day, but arranged his flights so he would be home in time to put the kids to bed.

I am reading … The Virgin Queen's Daughter by Ella March Chase. I love my historical fiction (especially of the Tudor period).

I am hoping … there is some way I can finish my Christmas shopping before Thanksgiving. Nine days left.

On my mind … all those children with Williams syndrome who are currently fighting for their lives.

We’re learning … that the family can survive without Mommy being on her toes for a while, although it does put a crimp in the laundry schedule.

Noticing that … I will never be a bikini model. Unless it's Frankenstein's bikini model. Why did they have to put one of my incisions right through my belly button?

Pondering these words … “I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.” — Blessed Mother Teresa

From the kitchen … my deep freezer is stocked with all sorts of delectable dishes to get us through the next couple of weeks without having to cook.

Around the house … oh my goodness, it is a mess! But I am so grateful for Shawn, Diane, Leslie, and Christina who have kept it together for me!

One of my favorite things … listening to Clare and Simon play quietly downstairs, their imaginations running wild.

A picture I am sharing …

Those bright blue eyes, those cheeks, she is so lovable!

Good Medical News All Around

2009-10-30T19:35:00.003-04:00
* We were finally able to get Clare vaccinated against H1N1.

* We potentially have already had H1N1 in our house, and everyone survived with a lot of sleep and a lot of Tylenol. ("Potentially" because no one was tested, so it's not definite, which is why we went ahead and still had Clare receive the vaccination.) Jamie got the brunt of it with almost every symptom and was out for four days. Simon, Clare, and Violet had fevers, sore throats, and general crankiness and fatigue for about two days.

* We received the results of Clare's lung scan, which showed lung output at 45-55. Almost perfect and better than her scan 18 months ago! Which means she is not headed into the cath lab anytime soon and will follow-up with the cardiologist with another echocardiogram and EKG in six months.

Blast From the Past

2009-10-26T14:13:00.002-04:00

I found this old photo of my little sister Christina and I from one of our All Saints parties as kids. I have no idea who we are supposed to be (maybe Mom can help?), but I am pretty sure whichever saint I was did not really have those lovely dangly earrings and humongous glasses, however stylish they may be!

A Prayer For All

2009-10-22T20:35:00.002-04:00
The kids received a new prayer book that has a prayer for just about anything you can think of. We chose one for cousins tonight since they are seeing all their cousins this weekend, and they are so excited for Jasmine, Alex, and Casey to come to our house. I should have scanned the prayer before reading it:

"Dear God, we like our cousins.
When they come to stay,
We talk and laugh and run and jump
And play.

Then we have an argument,
We shout and yell and fight.
We want them to go home again
That night.

But when they're gone we're sorry,
Although they are a pain,
We miss them and we cannot wait till they come
Back again!"

What kind of prayer is that?!? Is it wrong to throw a book of prayers away??

Insomnia

2009-10-19T23:35:00.004-04:00
It's one of those nights that even though I've been going all day, I still can't seem to fall asleep. Maybe a blog post will wipe me out...

We missed fall this year. Some rain, a few nice days, and now the temperatures are freezing. I sent both Jamie and Clare to school in their windbreakers with sweatshirts underneath in 40 degree weather because I hadn't hauled their winter jackets out of storage yet. Then we had snow yesterday. It didn't stick, but snow a couple weeks before Halloween is not allowed! Plus Shawn was away on business for three weeks. So we've been cramming in our outdoor fall decorating (hay bales and mums), pumpkin picking and carving, and putting together Halloween and All Saints Day costumes into a few short days instead of stretching it out over the month. Although Shawn missed out, my mom and I did take the kids apple picking with friends. They had a blast (even though it was freezing - apple picking in winter hats and gloves?!?). The orchard had every variety of apple you could think of, a play area for the kids, balloon man, and a wagon ride. With our friends, we had a total of nine children who naturally commandeered the wagon ride. They sang songs all the way out to the orchards and were pretty darn cute! So at least I've been able to do a little of my fall baking and cooking. Today was homemade applesauce. It was amazingly simple and delicious! Tomorrow I am aiming for pumpkin bread and apple gingerbread. I don't know what I love more - baking it or eating it.

Clare has her lung scan this week. Our local hospital agreed to do it unsedated, so that saves us a trip to Boston. Clare needs an IV in place to undergo the scan, though, so the hospital wants us to report to pediatrics 90 minutes before the scan for the IV placement. I hope they are just being ultra-conservative and don't want to chance being late for Nuclear Medicine. I really hate to think that it's going to take an hour and a half to insert the IV. Since it is looking like this is going to be at least a 2-3 hour appointment now, Shawn is going to take Clare alone. I can't remember if the lung scan results are immediate or not. My bet is that we will have to wait for the cardiologist to give us the news. Whether Clare goes into the cath lab or not rides on this scan.

I posted a long time ago about me personally having some kidney issues. I am not a fan of talking about myself, but I am undergoing kidney surgery next month. I am a tad nervous about the general anesthesia (only had an epidural with my emergency C-section with Violet) and the surgery and recovery itself (I have been told it will not be as bad as my C-section recovery, though). I am super nervous about Life At Home Without Mommy for 2+ Days, especially for Violet. I have been pumping and storing milk since I found out about the surgery, but finding the time to pump with four young children while almost exclusively nursing a 9-month old does not equal gallons of milk in my freezer. I know we will all survive my hospital stay (which will at least be two days if all goes well), but I still get a pit in my stomach thinking about it.

And if I don't go to bed, the kids will be greeted by Zombie Mommy in the morning...

Cheeks

2009-10-11T22:11:00.004-04:00
I love that this baby is all cheeks!

Cardiology Report

2009-10-07T19:04:00.007-04:00
Clare had her six-month cardiology work-up on Monday. What a long afternoon! How did I do this monthly or even weekly??? It wiped me out for the week.

Good news and okay news. It could have been worse! This was her first official visit with her new cardiologist. He has been part of our practice since Clare was born, and I have spoken to him a few times on the phone, but we had only met one other time in person. He was the cardiologist, however, who referred us to Boston to have Clare's fistula repaired, so I was already giving him two thumbs up. After this visit, I am even more impressed. He is so thorough, and it's a breath of fresh air to have a new perspective on Clare. Not that we were ever unhappy with her old cardiologist (who moved away), but I was wary of the new change in doctors and am very pleased with the outcome so far. My only negative was that he wanted to talk more than I did - and that's only because I was done after almost three hours at the doctor's office with three kids, ages 4, 2, and 8 months.

Good news comes first - according to the echo, Clare's heart has not changed that much in the last six months. Although her stenosis has not improved, the vessels are all still small, and she has a leaky aortic valve, this has not changed for two years, which is considered good. He also listened to Clare's left radial artery where her fistula was, and it sounded normal. There is no palpable lump anymore, so the glue has most likely been reabsorbed as well.

The okay news is that since it has been two years since Clare had a cardiac catheterization, the doctor is toying with the idea of sending her back into the cath lab. He does not want her to get to a crisis point before something is done. He would rather have her undergo a cath so they can get a more accurate picture of how she's doing and do some dilations if necessary. Before this happens, though, he is going to send Clare to have a lung scan done. She can do this at our local hospital if they will do it unsedated (which they would not do 18 months ago when she had her last lung scan, and we refuse to have Clare undergo the risks of sedation just for a scan). If the local hospital won't do it, she can have it done in Boston. The lung scan will show if her lungs are working fairly equal, which provides a good indication of how her pulmonary vessels are doing. At her last scan, she was 57-43, which is pretty good for Clare. If the lung scan shows positive results, we will follow up for another echo and visit with the cardiologist in six months and re-discuss a cath then. If the scan is not good, Clare will most likely have a cath sooner.

The other okay news is that Clare's blood pressure was a little on the high side in all four extremities. Upon reviewing her list of medications, the cardiologist informed me that she was on a "baby" dose of blood pressure medication for her weight and age. I cannot remember the last time her dose was increased. He asked me what I thought of switching Clare off the liquid med and onto a pill - a medication that would be more appropriate for her age and a higher dose. A pill that she can take once a day in the morning? A pill that means I no longer have to sneak in late at night and give her one final dose of medicine before I go to bed (or on those nights I want to conk out earlier, I have to set my alarm clock to give her the dose)? A pill that means I no longer have to pack a syringe of medication whenever we go anywhere in the afternoon (even if that's just to pick Clare up from school)? Oh my goodness - give us those pills!!! Clare has been swallowing a pill for a long time now with her thyroid medication, so she will be all set with this one. The cardiologist did caution to start the new medication on the weekend when she will be with me all day, in case the higher dose causes any adverse effects. So we are going to start on Sunday. (I would start on Saturday, but I don't want to interfere with her new Special Olympics group - more on that later!)

Swirling

2009-10-04T20:33:00.005-04:00
I feel like one of those plastic snow globes. Just when I think I can see the picture inside, it gets shaken up again and the snow falls everywhere blurring my vision. I have to wait for the snow to settle so I can try, once again, to clearly see the picture. And it never is clear. Not completely. There is always something still swirling in there. Even the tiniest bump sends it all flying once more.

Lately I am trending towards a negative outlook on everything. I don't know why. During Clare's first year, I definitely had my horrible moments, but, as a whole, I felt like I had it going on. We went through some very tough times as a family. Even though my life had been turned upside down, I felt like I coped amazingly well with it. Now this could just be my perception looking back three-plus years later. Maybe I've been this crazy all along. Recently, however, my coping skills are falling apart. Everything is catching up with me, and the stress is burying me in negativity.

I know how blessed I am. I count my five biggest blessings every day - my incredibly supportive, loving, hard-working husband and my four beautiful children. No matter how bad the day was, once everyone is tucked in their beds and sleeping soundly, I reflect on how much God has given me. Yet it's easy to feel this way when all is at peace in the house. It is so much harder to hang on to that feeling when the baby is crying, the 2-year old is biting the 4-year old, and the first grader is complaining that he doesn't want to do his homework, the little kids are too noisy, and dinner smells yucky (in that order).

It is incredibly hard to hang on to that feeling of blessedness when tragedy hits close to home. Last week, one of Clare's classmates passed away. He was a sweet little boy who had celebrated his fifth birthday only days before. During Clare's first year of preschool, it was just her and this boy on the extra day of the week. She loved him so much, and he was her first friend at school. She talked constantly about him at home. (See my April 2008 post Day Two.) When I heard the news on Thursday of his death, I was in shock and tears immediately filled my eyes. Sorrow for the family overwhelmed me - what a devastating loss for his parents and sister. How do you go on from there? I truly believe that this child is in Heaven with Jesus and is finally freed from the handicaps of his earthly body. Yet, at the same time, to mourn the loss of your child... I cannot even fathom it. And, selfishly, I rage against the fact that I, as a parent, am part of a community where children die. It's a reality here. Special needs children, children with heart defects, children with all sorts of medical problems.

I know I am blessed because four of my five children are still with me (my first pregnancy ended in a miscarriage, so I have one angel). And I have never lost a child who I had the chance to feel, hold, love, however long a life. A good friend of my sister's recently lost her baby less than an hour after birth. I have been keeping up with her blog and her loss overwhelms me as well. Overwhelms me with sorrow for parents in mourning and fills me with guilt that I have four living children when some people do not. I have always been a believer that God has a plan. But I can still question, at times, what could that plan possibly be? Why are these children taken away from their parents? I wish for just one moment that the snow would finally stop swirling to allow us a quick glimpse of the full picture.

Small Joys of Being a Mother

2009-09-30T20:46:00.000-04:00
SO FUNNY: In Target with Simon and Clare. Against my better judgement, I let them get out of the cart towards the end of our trip. They sprint off ahead of me. I am pushing the mega-ton cart (the one that holds two kids sitting in the front contraption, then there's the actual cart itself) loaded with stuff and Violet perched precariously in her car seat on top. So I am trying to catch up with my runaway children, but going kind of slow so Violet doesn't topple off. I can see Clare and Simon running towards the Halloween section. They run through a decorated arch, then start screaming. I have never heard them scream so loud! They both turn around with petrified looks on their faces and bolt back to me. Now they're both in tears and clinging to my legs. Turns out there was a motion-activated bigger-than-life electronic creepy skeleton on the other side of that arch - just waiting for errant children to run by him so he can scare them back to their mothers.

The Plot Thickens

2009-09-30T08:05:00.004-04:00
Violet started crawling yesterday, which was so exciting! Not as exciting today since it is only 8am, and I've already pulled playing cards, kleenex, a Bionicle piece, and fake plastic blueberries out of her mouth and rescued her from toppling down the basement stairs. Plus now she can find me in the house and cry at my feet until I pick her up.