Proud Preschool Grad

Jamie graduated from preschool yesterday. It is endearing how seriously he took it and how nervous he was! For the last week or so, there has been a lot of drama in our house revolving around graduation and the fact that preschool is over. Since this is Jamie's first year at school, I don't think he fully grasps the concept that he will return to the same school in the fall for kindergarten. All he can see is that he loves school and it is over.

The graduation consisted of a program of songs and a "bridging up" ceremony - the children crossed a bridge symbolizing their progression from preschool to kindergarten. The whole ceremony was very sweet. As I read the paper listing the names of the the Class of 2008, I couldn't keep the tears at bay. Crying over preschool! Oh well, that's the mushy mom I have become!

This is a video of some of the songs. The final song is the first song Jamie ever learned at preschool, so it was a great closer to a wonderful school year. We are so proud of you, Jamie! You have your first year of school under your belt and did fabulously (only 17+ more to go!). Your teachers gave us glowing reports of your performance - both academically and socially. They told us how you are everyone's friend and how all the children love to play with you. We look forward to seeing what kindergarten brings.

Hmmmm....

Whose shoes are those?

Baby Got Buzzed

(And also learned how to pull up today by using the open dishwasher.)

Meow

Rats... Foiled Again

I am not a stupid person. I learned how to read at the age of four. I was the valedictorian of my high school class. I graduated from college Summa Cum Laude and a member of Phi Beta Kappa. I have honed my razor sharp wits by running around after three small children (or maybe that has translated into Mommy Mush Brain). All I know is that I am completely stumped today. I have totally disappointed my five-year old son. For the life of me, I cannot figure out how to transform Optimus Prime back into a truck.

Super Mom ~ Happy Mother's Day

S~ So this is a one day late Mother's Day post, but I am hoping that late is better than not at all. So Teresa hates being called a Super Mom because she feels like it makes her have to be perfect, and let's face it, no one is perfect. But me, being a kid who loved comic books and super heroes, I never liked them because they were perfect. Without getting too close to the geek train, Superman turned into a wimp next to Kryptonite, the Hulk was an idiot, and Ironman has a bad ticker...far from perfect. But what made them Super was the fact that they sacrificed their lives for the sake of others. They overcame their weaknesses and persevered to do what is right. That is what makes my wife a Super Mom!

I am amazed on a daily business of what Teresa does, how she keeps everything together. She juggles so many schedules, between school, doctor's appointments, playdates, breakfast, lunch, and dinner. At the same time she will add swim classes for the kids and still find time to scrapbook and update the blog. The amount of work she does in one day is unbelievable. I look at her and I am awed by her strength to bring all this together. She has sacrificed so much for our kids and our home and that is what makes her a Super Mom! She has strength beyond Superman, brains beyond Hulk, and a heart that is big enough for a family of five.

I love my wife. I find her more beautiful each and every day, and I thank God for her and for all that she does for us. Teresa, thanks for everything you do. I know you don't think you are super, but to me and the kids, you are our hero! Happy Mother's Day (one day late!)

Juno

Shawn and I watched the movie Juno last night. What a great flick! I don't usually post movie reviews on my blog, but this was one of the best movies I have seen in a long time. Laugh out loud funny (and not in an Adam Sandler slapstick way), poignant scenes that brought tears to my eyes, and an incredible message. Without ruining the movie, Juno is about a high school student who gets pregnant. It is the story about her journey through this pregnancy - a journey she embarks on with her parents, best friend, the father of the baby, and the prospective adoptive parents. It might sound like a corny chick flick, but the dialogue is very witty and the actor who plays Juno herself is so cute and quirky - I just loved her!

As we drove to the beach today on our Mother's Day outing, Shawn and I were discussing the movie. He stated that he hoped if any of our children came home in a similar situation that we would react like the parents in the movie did (quite clearly disapproving of their daughter's actions while simultaneously supporting her - all portrayed in a very honest, human way - it was great, can I say that enough?). I told him truthfully that I think we would. I personally witnessed how such a situation could change a family when my sister became pregnant as a teenager. My parents were so incredible throughout it all. My sister gave her baby up for adoption. It was no walk in the park, but she weathered both the pregnancy and adoption process with such courage, fortitude, and dignity. I was in awe of her strength at 17 years old and continue to be in awe of her strength more than ten years later. My sister and my parents transformed a situation that certainly was not ideal into an amazing example of what being open to life is all about. This pregnancy did not ruin my sister's life - in many ways, I think it enhanced her life. And it definitely enhanced the lives of the adoptive family, receiving such an amazing gift from my sister - her own child. So Happy Mother's Day to you, too, my wonderful little sister!

Mama Ramblings

After a busy morning and early afternoon, it was one of those rare days when Simon and Clare napped at the same time (more often than not, Clare does not nap these days, but a morning at school then almost two hours with friends at the playground took care of that situation!). Jamie was having a bad allergy attack with swollen, red, and itchy eyes, so he was resting on the couch in the basement and watching a video. There was no one on the ground floor but me. Wow - what was I going to do with myself?? After taking one quick look at my spring cleaning list (the kind that includes vacuum the cobwebs from the corners of the ceiling and walls and reorganize the storage area), I saw that I was 85% done with my list. Without an ounce of guilt, I put the list aside, sat down in a chair, and started reading my book (if anyone is interested is "Mr. Darcy's Daughters" - a nice little book featuring the daughters of Elizabeth Bennett and Mr. Darcy from "Pride and Prejudice"). After a couple chapters, though, I put my book down and took Clare's first year scrapbook album off the shelf. It had be a long time since I had sat down with the book and really looked through it. I will pull it out for Clare sometimes, and we look at the pictures. This day, however, I read each and every page - every photo caption, every bit of journaling, and perused every picture.

It has been a while since all those emotions have come to the forefront. Weeks, maybe? I found myself tearing up as I looked back over her first year. As I read the pages documenting her four cardiac catheterizations and open heart surgery. It is still fresh in my mind how exhausting it was to be in the hospital when Clare was just in a couple weeks ago for dehydration. And I did not even stay the night with her, Shawn did. I can vaguely recall the emotions of Clare's most recent cath in September, but even that was already eight months ago. It struck me how much I now take our life for granted. Our current way of life. I had forgotten what it was like that first year. When Clare had five hospitalizations. When over the course of 11 months, we spent a total of 25 days in the hospital. Almost a whole month of Clare's first year was spent at Boston Children's Hospital. And the seemingly endless doctor's appointments. Compared to that year, our life now is a life of leisure.

When Clare went to the endocrinologist's last week, she had her thyroid levels tested (and a small victory where we are past the point where Clare needs her calcium tested anymore!). Instead of dragging the children over to our clinic to get the blood work (which I normally do), I opted to have it done at an outpatient clinic down the hall from where the endo's office is. Clare started crying the minute we walked in the room. The phlebotomist (who was extremely loud and slightly obnoxious) asked if Clare had ever been stuck before. Hmmmm... I toyed between making the sarcastic comment or the low-key comment. I settled on simply saying, "Yes, and she was just hospitalized last weekend and had a traumatic IV experience, so please use the other arm." I must say that despite the phlebotomist's grating personality, she was a master sticker and got that blood draw done in a flash. It's amazing when I think of my list of small things I am grateful for - a phlebotomist who can draw enough blood on one quick stick is definitely in my top five!

I enjoyed my trip down memory lane looking at Clare's baby book. But I am definitely glad those days are over. We still have our challenging "WS days" (as I call them) where I am once again overwhelmed by what Williams syndrome means in our life. But, as a whole, I am more in stride with everything now. I take it one day at a time!

Prayer Before Meals

Jamie loves to say the prayer before we eat dinner. He composes an original prayer every night for us, and they are usually along the same lines with slight variations ("thank you for a wonderful day, thank you for our delicious food, etc."). They are always sweet, earnest, and from the heart - as befits a 5-year old boy. Tonight's prayer, though, was the winner of all prayers:

Dear God,
Bless all of my shark friends especially the ones who have the diarrheas. Bless all the good guys and make the bad guys lose their powers.
Amen.

Gotta Love Cake

Simon is by far our best eater yet. Almost anything and everything. And the quantity! Oh my! So when it came to his first birthday cupcake, he dove right in. Literally face first. We have video of Simon face-planted onto his cupcake, and you can hear him making slurping noises as he sucked on the cupcake. It's actually kind of gross! If only we all tackled life as enthusiastically as this baby boy of mine!

Pinch Me

Someone please wake me from this nightmare. Either the USB port on our hard drive or my actual USB cable for my iPod is faulty. Whichever it is it means that I cannot sync my iPod with my iTunes right now. Which means that for the last five weeks I have been stuck listening to the Elmo Dance Party mix over and over and over and over and over and over and over...

All I have to say is Macarena and Cotton Eyed Joe...

First Birthday Baby

Where has the year gone? I cannot believe that my baby is already one year old. In the blink of an eye...

* We went from calling you Mr. Serious to calling you Mr. Smiley.
* Your hair changed from jet black to a light reddish-blondish-brown.
* Your soft coos transformed into wild shrieks and big belly laughs.
* We went from snuggling our peaceful bundle of a newborn to trying to hold down a giggling, squirmy boy during diaper changes.
* You grew a whole year older.

Happy 1st Birthday, Simon! You fill our lives with much love and laughter. We cannot imagine our world without you. Your first year of life has truly been a joy. In many ways, you brought our family back to normal. We love you, sweet baby birthday boy!

Routine

We're back in our routine again. It's so sweet! Everyone is finally fully recovered from that stomach virus. It took Clare a couple days to get her energy level back, but the overnight hospital stay was what did the trick of setting her on the right road.

Last week was Clare's spring break from school, so come this Monday morning, she was a little hesitant about going. I am sure there were multiple factors involved - just having been so sick and in the hospital (not a pleasant experience for Clare at all), not having school for a week, and her regular teacher was not outside to walk her in, but one of the aides. Clare was very reluctant to leave me, but I just bit my lip, kissed her good-bye, and walked off. I hate the walking off part. I feel as if I am abandoning her sometimes, especially when she is not enthusiastic about going in the school. Once I was farther away from Clare, I turned around and watched her walk in with Miss Karin. She had a good, if tiring day, and slept most of the afternoon!

Tuesday was more of the same. Jamie is on school break this week (one of the downfalls of having the kids in school in two different towns - different vacation weeks!), so we had a full car for pick-up and drop-off. Clare was more eager to go to school, and after dropping her off, the boys and I spent the morning at Barnes & Noble, one of our favorite activities. Our local B&N has a train table, a great children's section, and a Starbucks. Favorites all around! However, during the morning, I received the dreaded phone call from the school. I always have my cell phone turned on whenever Clare is in school (and I am not one of those "addicted-to-my-phone" people), but I honestly did not expect a call. Clare fell and hit her lip on a cabinet. She was bleeding, but the teacher said she was with the school nurse and diligently keeping an ice pack on her split lip. When I picked her up from school, she showed me her "boo boo" lip and seemed okay about the whole thing. Her teacher informed me that Clare was the most accident-prone child she has ever had! Great! (Of the three and a half weeks Clare has been in school, I know of two times she has fallen and cut her lip - who knows how many times she has actually fallen with no blood!) I told her it was probably due to the fact that Clare was low tone with loose joints, has trouble centering herself and regaining her balance, and has trouble visually scanning her environment while walking. Add that she is on aspirin and bleeds easily, it's a wonder Clare does not fall and injure herself more!

Today is Clare's day off from school, so we had finally had a nice lazy morning with nowhere to go! We attempted the playground, but our beautiful spring weather turned into a chilly and windy 40-degree day, so both Clare and Simon hated that idea. (I had to drag Jamie off the playground after 40 minutes - we were freezing!) Then the afternoon was spent at the endocrinologist's office and having blood work done (and we saw Laura and Michaela there - they are both such brave ladies!). Not my number one choice for an afternoon activity, but there is something comforting about being back in our routine, doctor's appointments and all!

Batter Up!

S~ So as Teresa mentioned in an earlier post, we have officially entered the organized sports stage of life and, with that, I have officially become a "coach." Which I kind of chuckle at considering that, those of you who know me, I'm not what you would call a sports guy. Anyway, today was opening day for our Little League group, and it was a ton of fun. I am really enjoying this because it is something that Jamie and I can do together. I had no idea what opening day was going to be like except that we were going to be playing our first game and that we had to be there by 8 am. After a long restless night at the hospital (see previous post), the early morning was going to be the toughest part.

We got there with a large Dunkin Donuts Toasted Almond Coffee in hand and immediately handed out the jerseys and hats. Once everyone was ready, we were brought to one of the bigger fields to line up. They were going to have us all run out team by team. Jamie thought this was pretty cool, especially because we were the first team to go out (although he was a little disappointed because he thought we were going to be playing on the local pro-minor league baseball field). All the teams ran out onto the field according to age of the players, so the major league players were last. As these 12- and 13-years olds were coming out, I could hear Jamie and his teammates make comments like, "We have to play those kids??," "How come they are so much bigger than us??" One of the coaches was in the service so when he ran out in full fatigues, all Jamie said was, "Oh man, they have a soldier!" The other coach and I had to reassure the kids that we were not playing all the teams, just the t-ballers.

After the opening ceremony, it was Game Time! Jamie did great. What I noticed was his attention to the game. He was always in the ready position and focused on what was going on. Also, he was a social butterfly. At one point, he was covering second base, and, I tell you, that was the place to be! Every kid who was on second got an instant friend to talk to. It was like every kid was Jamie's best friend, and these were kids on the other team that Jamie never met before. He was also great with cheering on his own teammates. When we were up to bat, you could hear Jamie rooting everyone on until it was his turn. It was a really great day!

It Got Us Again

Those blasted wee little germies landed Clare in the hospital overnight last night. The boys started to recover from the virus and were up and about and eating and drinking again, but Clare just could not get over the hump. By yesterday morning, we could tell she was getting dehydrated fairly quickly, but resisted our efforts to take in fluids. After a visit with the pediatrician, it was decided that the best course was to admit her into the hospital overnight for fluids. As much as I hate doing this to Clare, we knew it was for the best. Dehydration is a slippery slope with Clare because of the condition of her blood vessels, and it was a slope she was rapidly sliding down.

Aaahhhh... the hospital. The nursing staff was awesome and made sure we were comfortable and left us fairly alone, but there is still the trauma of putting in the IV (probably our worst experience yet with this because from the moment I laid Clare down on the bed, she turned into a little wildcat - rearing off the bed, trying to bite me, screaming bloody murder) and the whole mind-numbing fatigue of being in the hospital. Last night, as we were shuffling kids around, arranging for my mom to come up in the morning to help out with Simon (since it was opening day of t-ball and Jamie and Shawn had to be at the field from 7:30-11:00am), and generally trying to make some sense out of the chaos, I kept wondering if we made the right decision. Maybe Clare would have been fine by that evening. Maybe after a good night's sleep, she would have perked up and drank something for us. Maybe, maybe, maybe. But then I keep reminding myself that dehydration is not something we want to fool around with. Chances are that Clare would have been absolutely fine. But who wants to take that chance?

So we endured our short trip to the hospital. Clare received fluids overnight, did get a good night's rest (I wish I could say the same for Shawn, who stayed overnight with her!), and woke up this morning feeling so much better. She asked to eat, ate more than she normally does in the morning, and we were able to be discharged by 10am. Her bicarb levels were still low and some of her other levels were high (meaning she was still not fully hydrated), but since Clare's temperament and energy level had done a 180 overnight, the doctor felt comfortable sending us home. In retrospect, I think we made the right decision despite the hassle and exhaustion. I feel that Clare was just at a point where she did not have the strength or energy to recover on her own from the virus. She needed a little extra help. Now we have our smiling little girl back (who is busy upstairs mock-battling with her older brother with the balloons he picked out for her).

Oy!

The title sums it all up. What a day! After Shawn and I battled a stomach virus the last two days, the kids all succumbed today. They fought the good fight, but alas, were no match against the wee little germies (imagine that in a Scottish accent). We won't go into all the gritty details, but imagine doing piles of laundry, scrubbing stains out of the bedroom carpet (don't even go there), and a weak, exhausted, running on 4-hours of sleep mommy (not to mention the tired daddy who had to get some work done today after skipping out the last couple of days).

My positive outlook is that I've had lots of time today to snuggle on the bed with Jamie and watch "Toy Story," snuggle on the couch with Clare and read lots of Elmo books, and snuggle in the glider with Simon rocking him to sleep.

Signs

Yes, I am a dorky believer in signs. I am one of those optimistic people who truly believe that everything happens for a reason. We may never know the reason of certain things while we live on earth, but God's plan will unfold once we are with Him. Someone once explained it to me like this, and I thought it was a beautiful and easy-to-grasp concept. God's plan for our lives is like a gorgeous embroidered quilt. However, we can only see the back of the quilt. The colors are stunning, we can see some glimpses of what the overall design is, but mostly we see a lot of knots, crisscrossed threads, and general chaos. However, once we are with God, the quilt is flipped over and we finally see God's ultimate, perfect design. It was always there and it's the same quilt, we are just looking from a different side.

My uncle Steve was recently in Vienna, Austria. While there, he toured a local church. In an alcove were two female statues. The tour guide explained who the two saints were - St. Clare and St. Therese. Steve was struck that Clare's two patron saints (her full name is Clare Therese) were together in this one alcove. He snapped some photos to share with us. It's little signs like these that remind me that God is watching out for our Clare. And that our family watches out for us, too. Thank you, Uncle Steve, for thinking of us and taking the photos!

Showcase

Make an on-line slide show at www.OneTrueMedia.com

Innocence

I hope you always find unbridled joy in life.

I hope you never grow too big to climb into my lap for snuggles.

I hope you always wake each morning eager to see what the day brings.

I hope you never feel that you are insignificant or worthless.

I hope you always spread your infectious charm to those around you.

I hope you never stop coming up to me and asking, "Hug me?"

I hope you always know how much you are wanted, treasured, and loved.

Spring Fever

It's so cliche, but we really have spring fever over here. It's been (knock on wood) a little over a week since our last snowfall. The snow is almost completely gone from our front and back yard, and, yesterday, Jamie and I raked up the last of the leaves and uncovered our sprouting daffodils. We've spent the last three evenings grilling, taking walks, and getting Jamie started on riding his bike without training wheels. Jamie is signed up for baseball at the end of the month, and he is thrilled to practice catching and throwing with Shawn in the evenings now. I am a little wary of this new phase we are entering - Organized Sports. I have always felt very strongly about sports (or any other activity) not running our lives. Jamie is only 5 years old, but it's amazing what is out there for kids these days. And the amount of time and commitment involved. A friend was telling me about her daughter wanting to do cheerleading and, in one month, it is almost every single night. And her daughter is only 5 years old! Even Jamie's baseball is going to be one night and one weekend afternoon per week. To me, that is the max I will allow on one activity. I am cautious about entering the stage of being a "baseball mom."

Clare is into her second week of preschool now. She has done remarkably well. I am thankful my kids are fairly adaptable children. Clare is eager to see her teacher in the morning and walks in with Miss Pam without a fuss. She is always happy to see me or Shawn when we pick her up, but her teacher reports that she is enjoying herself. My one concern is that when I picked her up yesterday, she was exhausted. It was her day of OT and PT, so that may have contributed to her fatigue. But her face was ashen, and she just looked terrible. Normally, we go right home from school, do lunch, and have a nap. But Simon had a doctor's appointment (yup, another eye infection and fluid in his ears - no ear infection yet), so we were still out and about. By the time we got home, Clare was a wreck. We're obviously going to keep an eye on it for now.

Additional note - So, of course, I started writing this post mid-week and life takes over. Now it is Sunday evening and I am finally getting around to finishing it. Baseball is officially starting this week, and both Jamie and Shawn are super-excited. Our yard is finally snow-free. Clare LOVES to play outside. It is a new experience for her, and she is thrilled to walk around the yard, pull moss off our stone wall, draw on my car with sidewalk chalk, and repeatedly go up and down the ramp to the shed. I talked with her teacher on Thursday about Clare's extreme fatigue after school on Tuesday. Her teacher will make note of it as well, talk to the PT, and see how Clare does this coming Tuesday. Simon's eye is back to normal, and we avoided another ear infection.

We spent the afternoon at the beach today. It was extremely windy right down by the water. Jamie, Shawn, and Simon walked along the ocean's edge, while Clare finished her nap in the car. Once she awoke, we joined them. Clare hated the wind! Her new sentence that she now says about a thousand times a day is, "Me no like it." (Her language skills have exploded, but we'll save that for another day!) As I carried Clare back from the ocean to the nearby playground, the wind was whipping wildly around us. She yelled the whole way, "Me no like it! Me no like it!" I did feel bad for Clare because she really does not like the wind, but she was also making me laugh so hard! We ended our afternoon frolicking on the playground then home to pizza and wings. I love our lazy weekend days.

Scenes From a Dance Party

American Idol Rewind

Randy: Awright Dog, Listen Up...(Applause, Applause)..Awright.Dude Listen up...That was HOT! The Clare Bear was burning it up up there, Yeah Dog you Rock!

Paula: Clare, let me start by saying you are beautiful and you look great up there. Clare what I love about you is that you are a free spirit and know exactly who you are. You really feel the music and deliver it in so many different colors. You are already a SUPERSTAR!

Simon: (To Paula)Are you done? (Pause) Clare you know I am a big fan, at first I thought this was a bit Kareoke, a little Elmo dance partyish, but then even I got caught up in it and your performance and realized that you are a superstar, you can sell millions of records and that song choice was spot on! (Applause). If I had one criticism, it would be to lose the band!

Day Two

Today was Clare's second day of preschool. It was her first day with the full class, so I was a little nervous how she would do. She had such great one-on-one time with her teachers on Tuesday that I hoped she wasn't lost in the crowd today.

When Clare woke up this morning, I told her we would go downstairs and play. She asked, "Kelly?" (who was Clare's PT up until last week). I told her no Kelly, but that she would go to school today and see Miss Pam and Miss Karin. Clare smiled and said, "Hello, Payton." This is the little boy who is the only other one in her classroom on Tuesdays. I couldn't believe that she remembered his name! And connected him with school. That was encouraging.

When we pulled up to the school, Clare walked out with her teacher. I received more big smiles and "Mama" from Clare. Her teacher relayed that Clare had another super day. They had gym class today, and she said Clare did very well with the other kids. This is one of our big concerns - Clare cannot run or jump and can get thrown off balance by kids running past her (the whole visual tracking piece that Clare needs to work on). We want her to be involved in her entire school day, but we also want her to be safe. So I was pleased to hear that Clare was able to hold her own. She also ate a blueberry granola bar and drank a small cup of chocolate milk for snack. Then asked for more! That was the most shocking bit of news. Two things that Clare has never eaten (and not for lack of offering). I am sure the teacher thought I was a little silly because I kept saying, "Really? She actually drank the milk? She ate the granola bar?" I just couldn't believe it. Food is one of our biggest battles at home. To hear that Clare did something new food-wise at school is amazing.

So we have survived Day Two as well. I promise not to detail every day of Clare's schooling! I know it's still a little too early to tell, but the transition is going so well thus far. I even enjoyed myself today with Clare at school. Jamie has been asking daily about going to the playground. Since there is still snow on the ground in our backyard, I was unsure of the playground conditions. I promised him that we would check out the playground one day while Clare was at school. That way, I did not have the added challenge of making sure Clare was safe on the playground regardless of whether it was covered in snow and ice. We have not been on the playground since fall, so I want Clare's first experience to be in optimal conditions. We met friends at the playground nearby. It was very windy, but Jamie and his buddy played for over an hour, Simon was content bundled into his stroller with a snack, and I could actually relax and visit with my friend. All in all, a good day.

First Day of Preschool

We all survived! Actually, Clare did incredible on her first day of preschool. As we truly knew in our hearts that she would. As Shawn posted earlier, we all brought her to the door, gave hugs and kisses, then Clare trustingly walked off with Miss Karin, one of her classroom aides. That was almost as hard as handing Clare over to the doctors before one of her caths. We've been talking with Clare daily about going to school, but I am not sure how much she actually gets what it is all about. When Miss Karin held out her hand to Clare, Clare took it without question and walked away with her. She waved good-bye and blew a kiss, but then did not look back. Which is how I want it. I don't want to think of Clare crying, miserable, scared to go to school. But it does make my heart ache a little that she was so trusting and willing to go with someone she only met the day before for 20 minutes. That's the nature of her personality.

Yes, I did start crying as we were walking back to the cars. I knew she would do well, but it was more the fact that she was actually old enough to be going to school that made my eyes tear up. We've been talking about this day since she first started with Early Intervention, but it was always something in the distant future. Now it is really here, and we have entered into a new phase of life with Clare. I quickly wiped my tears away, though, since I had Jamie and Simon with me. It was swim class day, so that was a good distraction while Clare was in school.

Although we do not get to see Clare in her classroom since drop-off and pick-up are outside the school building (thus why there are no photos of Clare in her classroom), we were able to talk about her day after school with Miss Karin. Tuesday is the "low" day in their classroom. Only the kids that need to go four days a week go to school on Tuesdays. In Clare's classroom, it is only her and one other boy. Clare's OT peeked in on her during the day (since Easter Seals shares the building with the developmental preschool) and reported to us that Clare was sitting in her chair working on a puzzle. She was following directions, paying attention, and doing really well. She also said that Clare enjoyed being with the other child in the classroom. I am glad Clare's first day was a quiet one at school (normally there are 13 children total in the classroom). It gave Clare a chance to warm up to the schedule of the day and the rhythm of the classroom and gave the teachers the opportunity to spend a lot of one-on-one time with Clare and get to know her. Miss Karin said they are going to start slow with Clare, but were able to get her to sit at the table for 10 minutes concentrating on a task. She did say that Clare repeatedly questioned "up? up?" to get out of her seat, but did listen when she was told not yet. Clare also had some OT and speech today. They end the school day with a reading of Brown Bear (by Eric Carle). This is one of Clare's favorite series of books, so I was not surprised when Miss Karin said that Clare found storytime very soothing.

When we all trooped back to the school to pick Clare up, she was waiting for us outside with the teacher. Clare was happy to see us ("Mama!" and big hugs), but we could tell she also had had a good time at school. She was exhausted, though, and went right to sleep after lunch (she normally puts up a stink about taking a nap - "No nap! No nap!"). Her next school day is Thursday, so our new weekly routine has begun! Below is a video of Clare walking in with Miss Karin. What a big girl!

45 Minutes and Counting...

S~Okay it has only been 45 minutes since we dropped Clare off at school, but it is driving me crazy. Teresa cried as we were leaving, and I cried in the car...it shouldn't be this tough! We have spent so much time and invested so much with our little girl that it is so scary to hand over all that responsibility to a complete stranger.

Anyway, enough of my insecurities. Clare took it great. After a hug and a kiss to all of us, she grabbed the teacher's hand and off she went. After I walked the rest of the family to the car, I was walking back to my car and I stopped at the door to her school, which was still open. I saw Clare inside taking off her backpack and jacket. I watched for a few minutes to make sure she was okay. She finally noticed me and gave a little start towards me which I had to make her stop by motioning her to stay. She stopped and gave a little wave with just her fingers. I blew her a kiss which she returned and then I left. I will remember that image of her standing there like a big girl for the rest of my life.

Happy 3rd Birthday, Clare Bear!

S~ Clare, today you turn three years old, and your mom and I could not be more proud of you. I remember when you were born and we found out you had Williams syndrome, so many things went through my head. I was nervous about what the future would hold for you, scared that you would not make it to see that future. I was selfishly disappointed that your mom and I would not have our golden years just the two of us, and I wondered how we would be able to raise a daughter with special needs. Now after three years, none of that matters. The only things that do matter are the little kisses you shower me with, the way you run to me, arms held out and yelling "Daddy" when I walk into the room. How you make everyone laugh with your silliness. You truly define your name of a light that fills the room.

I look back at all my fears and worries when you were born and, looking at all you have gone through since then, well, those fears all seem a little foolish. Your mom and I thank you for making us better people and a better couple. You have strengthened our marriage in ways we would have not been able to without you. You have forced us to know how to be strong in tough situations and to take life on a day-to-day business. So, on your third birthday, Clare, we thank you for all the gifts you have given us and those you come in contact with... We love you, Clare Bear!

Warmer Weather Wanted

Today was the day of Clare's school visit. However, Mother Nature had other ideas. We are in the middle of a huge snowstorm, so school was cancelled for everyone. Clare is supposed to have her first day of preschool on Monday, but I don't like the idea of sending her to school without Clare ever seeing the classroom or meeting the teacher before. I have not heard back from the school yet about changing our plans (perhaps no one goes in at all on snow days??). I hope we can do Clare's classroom visit on Monday instead, with her first day being Tuesday. Makes her third birthday a little anticlimactic with dropping the whole "starting school" bit but I refuse to just drop her off on Monday with no preparation whatsoever. At Clare's school, we do not get to walk her into her classroom. The teachers and aides meet us at the curb outside and take the children in. That is not going to be Clare's introduction to school. Out the car door and here you go!

Easter Photos

Coloring eggs - Jamie does the traditional hard-boiled kind, while Clare does... something else. We're not sure what she is doing.

The Easter Bunny brought rainboots, gardening tools, and lots of candy!

The Easter egg hunt was a big hit with everyone.

(You'll have to excuse my poor formatting skills. Blogger throws me through a loop every time I try to arrange my photos. It's killer on my Type A organizational skills, but what can you do.)

Quiet

All is quiet on the homefront here lately. Well, relatively so. We hosted a small Easter dinner (as compared to past years) on Sunday. Saturday was spent cleaning the house, making food, and coloring Easter eggs. Clare got in on the fun this year. She was fascinated by the idea of coloring eggs. She colored one, then discovered that cracking and peeling was more fun. We gave her her own bowl of yellow dye and let her do what she wanted. I think she's the first person to dye scrambled eggs. It was a pretty disgusting mess. Due to the mounds of snow in our yard, we held our Easter egg hunt inside for the second year in a row. The kids didn't mind, though, and Jamie easily found half of the eggs. (All those hours spent doing I-Spy books, that kid could find the needle in the haystack.)

I received a call from Clare's endocrinologist this morning informing me that Clare has flunked her six-week trial off her thyroid medication. Her TSH levels (thyroid-stimulating hormone) were too high, so she is back on her medication. The doctor called at 7:30am (one reason why I love Clare's endo is that he makes the phone calls in person - no nurse or secretary relaying information), and I was still working on actually waking up, so I didn't ask a lot of questions. I know in Jamie's case, once he failed the trial off medication, we were told he would need it for the rest of his life. I assume this will be the case with Clare as well. Shawn and I have noticed that Clare has seemed more tired and irritable lately. At first we thought it might be her heart, but once that was cleared, her cardiologist pointed out that it might be symptoms of hypothyroidism since she has been off her medication. Now that we know Clare needs to be on her medication, maybe she was starting to display symptoms.

We are in the last days before Clare starts school. I really don't know what to think. Part of me is excited for her. This is such a big milestone. I truly think that school will do wonders with Clare and that she will thrive. I also know it will be a huge adjustment. The boys take swim classes on Tuesday, and Clare plays in the childwatch room for an hour while we swim. She always does great in the room and enjoys it. But she is always so happy to see me when I pick her up - I get kisses and big hugs. I wonder how she will do with two and a half hours away from us. We have our school visit on Friday to bring Clare into the classroom. Then the big day is on Monday, her third birthday. Clare really has grown up so much over this past year - walking, talking, so much more independent. She has gone from being my baby to being a big girl. Not a toddler anymore, but a preschooler. Okay, I have to stop before I start crying!

When I get the chance to find my camera, I will upload some Easter pics.

Cardiology Update

Good news up front - Clare's next cardiology appointment is in six months!

Clare had her cardiology appointment and echocardiogram done today. It came up so suddenly (or seemed to) that I didn't even get a chance to properly freak out about it. She had a lung scan done at one of the Children's Hospital sites in Waltham a couple weeks ago. A normal lung scan reads 45-55 (cannot remember which lung is which) - Clare's measured 43-57, so she is almost at a typical output for her lungs, which is fabulous news. She was very squiggly-wiggly for the echo this afternoon. I kept threatening her that if she did not sit still, she would end up having her echos done under anesthesia in the ambulatory center. And we don't want that. Those words failed to impress her, but having two lollipops in her mouth at the same time worked wonders. Thankfully, we have the best echo tech in the universe (who has been echoing Clare since she was one day old), and she was able to get what she needed.

Clare's blood pressures and oxygen levels were great. Her weight was up two pounds from her last visit three months ago. And all her gradients measured almost exactly the same from her last echo! Truly awesome news!! Her doctor was very pleased. So much so that Clare does not have to return for six months. This will be our longest stretch ever between echos. Hopefully my nerves will last the entire length as well!

While we were at the clinic, I had scheduled an impromptu appointment for Simon with our pediatrician. He caught the lovely virus that Jamie and Clare had a couple weeks ago, but it seemed to linger in him. After a few days with a fever, congestion, and general crankiness and clinginess, it turns out that Simon has another double ear infection. (His third double ear infection in a little over a month.) We're now at the point where the doctor has brought up "the tubes." Personally, I think it's all an act and Simon just wants to have his thing. You know, Jamie has that thyroid thing, and Clare her heart thing. I think Simon is vying for the spot of the ear thing. God forbid one of our kids is (tongue-in-cheek) "normal."

[The photos are from our recent trip to the local children's museum. The kids love going to this place. Clare's favorite part was playing in the doctor's office (hmmmm... I wonder why?). She enjoyed being the medical secretary more than being the doctor. And, as you can see, even firemen go to the dentist.]

Blessings

During those moments and days when I wonder what we are doing here, I stop and reflect on the multitude of blessings in my life. And I thank God for each and every one of those. My top list today:

* An amazing family, my incredible husband, and three fabulous children.
* Friends to hang out with for hours, drinking wine, and indulging in fondue. Friends who just get me - no explanations needed.
* And the other sweetest almost-3 year old girl in the world who just makes my Clare light up. These two little girls are so precious.

IEP.... Not as Bad as One May Think

We had Clare's first IEP meeting yesterday. After more brief panic attacks about what to wear (ummm... and promptly forgot said panic attack come yesterday morning and ended up wearing my favorite pair of jeans that I wear five days a week and a comfy shirt), what we were going to insist upon having in the IEP (which Shawn and I hashed out in detail during commercials while watching the first Final Twelve showdown of American Idol), and whether or not all children would be healthy so we could leave them with their grandparents (I am pleased to say they were all healthy for exactly one day!), the day of the IEP finally dawned. This long-dreaded-oh-so-important step in the transition process was here.

For those who have never had the experience of venturing into the world of special education (and I had no clue what any of this meant before Clare), IEP stands for the Individualized Education Plan. In a nutshell, it is a list of the educational goals we would like Clare to reach by the end of the school year. It also includes a list of accommodations that Clare will need to reach those goals as well as whatever services she will need. It's a signed contract between us and the school department. Signing all the paperwork was almost as bad as buying a house.

Shawn and I were both extremely satisfied with the results of the IEP meeting. The team was great, and the IEP was thorough. I expected to go in there and help them draft the whole thing up right then and there. But the IEP was already written, we went over it in detail, then we brought up our concerns. Other than a couple sensory goals, everything we wanted for Clare was in the IEP. Including a defibrillator on site with trained staff. Hooray!

Clare will be attending preschool four mornings a week. The team felt Clare needed a fourth morning of school because of all the services she will be receiving - two units of group speech, one unit of group OT, one unit of individual OT, and two units of individual PT per week. It only amounts to 3 hours of therapy per week, but that's longer than the length of an entire school day. I was happy with this arrangement. Going in, I wanted one hour of PT, OT, and speech per week, which we got. At this point, I am not concerned whether the services are group or individual. We will see how Clare progresses and take it from there. One of the good things about Clare starting preschool at the end of the year is that she will only have about 10 weeks of school before summer. So we will have a chance to evaluate her progress, figure out what worked and didn't work, what we liked, etc. then have all that information when planning her first full year of preschool come September (and writing a new IEP). The team also felt Clare needs an extended school year or else she will regress over the summer, so we enrolled her in the five-week summer course as well. In addition to all this, we are going to continue outpatient OT with Clare's current OT, Jen, to work on Clare's sensory oral issues. We have had to cancel OT the last couple weeks due to illnesses between Jen's family and ours, and I can feel us slipping away a little. So I am eager to start up again.

After the meeting, the assistant director offered to show us Clare's new classroom. Clare will be coming in for a visit day at the end of the month prior to starting school, but Shawn and I jumped at the chance to get a sneak peek. As luck would have it, Clare's new teacher was in the building. Although she didn't currently have a class since it was the afternoon, she walked us through her classroom. She explained the different areas of the room and the daily schedule. She was obviously already well-informed about Clare and asked us lots of questions. I instantly liked Clare's new teacher. (Warm fuzzy feelings - yea!) The teacher was genuinely interested in learning all she could about Clare, and we could tell she loved her job and the kids. We also discovered that Clare's classroom is directly across from the nurse's station (who will be on site whenever Clare is in school).

I have been dreading the day when Clare starts preschool. I am so glad we had the opportunity to meet Clare's teacher and see the classroom. I will still be a basket case come March 31, but many of my fears and worries have been relieved. I must say that coming into this process with so much trepidation and low expectations has worked out for the best! Nowhere to go but up!

A Little Bit of Fame

Nothing too grand, but I am briefly published in the April edition of Parenting magazine. And I mean briefly. Basically a blurb in their regular feature "Mom Exchange." This month's was about different ways families stay in touch with extended family and friends. So, of course, I talked about blogging. And I am quoted!

So if you have your April Parenting magazine handy, open up to Page 27!

All Dressed Up

In the Thick Of It

We are now in the thick of Clare's transition from Early Intervention to preschool. Last week, we had Clare's eligibility meeting. Basically, Shawn and I (accompanied by Clare and Simon - lucky Jamie had a playdate) sat at a table with Clare's current OT and PT from Easter Seals, and the team from the school department - the assistant coordinator, school nurse, speech therapist, and special educator. After the coordinator explained they were coding Clare as "other health impaired," the eight of us signed a piece of paper and circled the word "yes" stating we believed that Clare was "other health impaired" and qualified for the developmental preschool. Then we signed more papers agreeing with that decision, then signed more papers stating we agreed with the papers we just signed agreeing with the decision. Love all the paperwork!

So now Clare is officially eligible for preschool. The next thing we discussed was equipment that Clare would need for preschool. This way, if anything needs to be ordered, they will have it in time for Clare's first day. The first thing the school nurse brought up was a defibrillator. I admit that surprised me. Having an AED in Clare's school is something that Shawn and I have discussed and both agree we are going to push for. But I did not expect one of the team members would mention it first. I was equally surprised to find out that the none of the preschools have an AED. The nurse explained it was not mandatory unless the school had an organized sports team. (What - no preschool volleyball or field hockey??) I am pretty sure Clare is not the first child to go to one of these schools with a heart condition, so I have a hard time believing she is the first child to require an AED. I could not get a feel whether the AED requirement is going to be a battle or not. The other pieces of equipment discussed were things like a chair with sides, a toilet seat with handles, no stairs in her everyday environment, that kind of stuff.

Our next step is the IEP meeting this week. We have our childcare all lined up for all three children so that Shawn and I can concentrate on writing the IEP with no distractions. Unfortunately, Jamie is getting over the flu, Clare currently has the flu and sleeping soundly in the middle of the day as I type, and we are praying that neither Simon nor us come down with the flu. I have a feeling, though, that I will not be participating in the IEP meeting.

Snow Bunnies

It's been quite a winter here in New Hampshire. I laugh at some of my posts from last winter and the photo of Jamie standing next to the tiniest snowman ever built. Not the case this year. It's been the snowiest winter in NH history. Which was so nice and lovely in December, kind of nice in January, not so much in February, and we're officially DONE WITH WINTER now that it's March. However, we were just dumped with more inches of snow last weekend, and the snowblower died a quick death right in the middle of our half-cleared driveway on Saturday. Shawn went snowblower shopping that afternoon and unfortunately, since it's March and thus we're into summer gear already, the pickings were slim. We may be shoveling ourselves out the rest of the winter.

It's been the kind of winter where our swingset has half-disappeared, our deck is barely visible, and there literally is nowhere to put anymore snow from our driveway. We have two piles of snow on either end of the driveway that are easily seven feet tall. It's a blind backout every morning, praying I don't hit a neighbor's car. With all this snow, though, the kids have not had a lot of time playing outside. Neither Simon nor Clare can walk in the snow, and they rarely nap at the same time. I am not up to the task of carrying two children around in the snow, so Jamie is either stuck staying inside with us or playing outside by himself.

Today, however, was a "warmer" day (I love how 40 degrees seems positively balmy after temperatures below freezing). I convinced Shawn to cut out of work for a little bit this afternoon, and we bundled the kids up to head outside. Clare has not had much practice walking outside because of the winter conditions, but I thought we would give it a whirl since Shawn was here to help out with Simon and Jamie. I figured we would last about five minutes. Jamie bounded over the huge hill of snow like a rabbit and was off into the backyard. Simon sat in the stroller and laughed at Jamie's antics. Clare shuffled around on the sidewalk experimenting with the sensation of walking on uneven ground while wearing snowpants and snowboats (a first for wearing both those items). Her confidence soon increased and, before I knew it, she had taken off down our driveway. Our snowy, ice-crusted, uneven, downward sloping driveway. Not a trip, stumble, or fall!

Clare loved playing in the snow. She picked up snowballs (the bigger the better), chunks of ice, and the dirty yucky plowed snow. While Jamie and Shawn had a huge snowball fight and I pushed Simon around, Clare stomped in the puddles and touched all the snow she could get her hands on. We had a fun afternoon walk in the snow. Now it can all melt.

Valentine Fund Thank You

Thank you to those who donated to the Williams Syndrome Association Valentine Fund in honor of Clare. We received our list today of who sent in donations in Clare's honor, so we know who you are! A big thank you to all!

It is not too late to donate, if you are interested. Simply click on the link to the right to be directed to Clare's page.

Reeling

I don't even know where to begin sometimes. There is so much in my head threatening to spill out and I try to marshal it, corral it, and rein it all in, but often it is too much.

The death of Blake has naturally hit our little community hard. The WS-mommy bloggers (as I refer to us) have been together for some time now. I think I was the first to start three years ago, but our numbers have exploded over the past couple years. There are so many of us now I cannot keep up with everyone (thus why I only have a select few linked on my blog). It's amazing to have this close group of friends, the majority of whom I have never even met in person. We have been there for each other through it all - the highs and lows, the triumphs and challenges. We have counseled, supported, and loved each other on the phone, via e-mail, through our blog posts and comments. We have been there through those tough days, nail-biting tests and evaluations, multiple echos, caths, procedures, and surgeries. But this is the first time we have experienced death in our community. That one of our precious children is gone. And, at least to me personally, it has sent me reeling.

My heart just aches for Whitney, Troy, Brandon, and their family. I cannot begin to fathom what they are going through. I pray I never have to find out. Yet I know this has been another dose of reality of how fragile many of our children are. Last night, as I said my final good-nights to Jamie and Clare, I leaned into Clare's bottom bunk. She was sitting there in her blue airplane hand-me-down boy pajamas, her crazy curls standing on end, and wearing dress-up earrings, a bracelet, and a ring (which she must have smuggled in her bed sometime during her afternoon nap). She looked so beautiful, so sweet, so tiny. I gave her a big squeeze and whispered, "Mommy loves you so much." She touched my face and whispered back, "I love you." That's what keeps me going.

In Memory

Baby Blake

July 6, 2007 - February 26, 2008

Your time in this world was not long, but what an impact you made on us all. You are loved. We are praying for you and your family.

Blurb

In our own little neck of the woods, Simon is back on his feet. His lungs, ears, and eyes were clear at the doctor's yesterday, and his oxygen levels were back up to 99. Jamie and Clare only got a touch of the sniffles, as did Shawn and I.

In my larger WS-community, however, life is not as good. It makes me feel helpless that, many times, all I can do is tell someone I am praying for them. I am such a do-er kind of person - making meals, watching kids, anything to make someone's life a little easier in the practical sense when faced with such hardships. I cannot take away people's worries or stress or fear, but I can make sure they don't have to be concerned about getting dinner on the table. However, being far away from the majority of our WS-blogging mommies, I wish I could do more. All I can say is that my prayers are serious. We have been saying the rosary as a family every night this Lent, and there have been many special intentions for our WS-friends out there. We continue to keep you in prayer.

Update - Ava is home now and slowly on the mend. Thank you to all my family and friends who keep our friends with Williams syndrome in their thoughts and prayers as well.

Reality Check

As I mope and complain about how tough things have been around here lately with illnesses, I have to stop and think about those who would give anything to just be at home with their kids right now. As I write this, I am thinking about Baby Blake and Ava - two kiddos with Williams syndrome who are currently in the hospital and have been for some time. Ava is very sick, Blake is fighting for his life, and it hits me hard with a dose of reality. It reminds me that I need to take a step back and count my blessings, not my woes. To hug, love, and kiss my kids even when I am fatigued, and thank God that we are (relatively) healthy. That Simon is slowly getting better and did not end up in the hospital. That Clare has gone five months without needing a cath. That Jamie is running around, playing, and being his normal bundle of energy. I say a special prayer tonight for those two children and offer my challenges, frustrations, and worries of the day as a sacrifice to them.

When It Rains

... it not just pours, it's a monsoon.

After battling various illnesses over the past three weeks, Simon was diagnosed with RSV and bronchial asthma yesterday. After running around town to find a nebulizer last night and getting our baby breathing easier (his oxygen levels were low), I took him back to the pediatrician today for a re-check of his lungs. Now it is not RSV, but pneumonia. Plus another double ear infection and a double eye infection. With Simon and Clare combined, I am administering 20 doses of medication daily plus nebulizer treatments every four hours. And Shawn is away on business. Join my pity party please! And pray for Simon to kick this pneumonia and be back on the road to health.

First Haircut

I need a haircut! I can't go around and let the girls see me like this. What is that thing sticking up in the back? I look like such a baby with this hair.

Hey, this is fun! Wow! A big boy haircut. At the same place and with the same woman that Daddy and Jamie go to. I am one of the guys now. Woo hoo!

Actually, you know what? I really am all done with it. This is no longer fun. No, I mean it, quit holding my face, pulling my hair, spraying water on my head. Just stop it. NOW!

The finished product - a handsome 9-month old with a big boy haircut. (Or as Daddy likes to call them - My First Mugshots.)

Little Princess

Busy Week

It's been a busy week in our household. Clare has had some sort of thing going on every day, we've had some wicked weather, and poor Simon is still sick.

Between freezing rain, icy cold temperatures, snowfall, and flooded streets, we've been fairly housebound all week. Jamie had a snow day on Wednesday, so three days in a row without school has been tough. He is definitely at the age where he is not content to just be at home all day with me and the "little" kids anymore. Everyone goes stir crazy being cooped up in the house all day. With Simon being sick, plus everywhere you go is a sheet of ice these last few days, it has not been ideal conditions to even take a break by going to the bookstore, mall, Target, anywhere!

My sweet happy baby finally turned into a monster. I jinxed myself by bragging what a good boy he was even with all his ailments. By the weekend, he spiked a fever and was miserable (to put it mildly). He stopped taking naps and slept horribly at night. By Tuesday, he had also developed a deep, hacking cough and sounded wheezy when he breathed. So it was back to the doctor's office to add diagnoses of a double ear infection plus a worsening skin rash, which in turn means antibiotics and steroid cream. Slowly we are seeing our Simon come back to us from this red, speckled, unhappy baby we have had all week. (Spattergroit, anyone?)

Clare has had a busy week. Besides OT on Monday and PT on Tuesday, the feeding team came out on Wednesday, and she had her special education evaluation with the school department on Thursday. The feeding team spent an hour and a half at our house, and the only thing we got out of it was to try adding pureed cauliflower to Clare's macaroni and cheese. Shawn and I were not as impressed with the feeding team this time. We both feel Clare is at a point now where she physically has the oral motor skills to eat almost every kind of food. However, she is at the picky, opinionated 2-year old phase of life, and we see her exerting her control over what she eats and, more importantly, does not eat. Clare does have a lot of sensory issues going on when it comes to food, so her OT has been working weekly on that with Clare. I think Wednesday was our last visit with the feeding team. Although they scheduled a six-month follow-up for August, I just don't feel the need to have Clare seen by them anymore. I feel it is a waste of time for everyone involved. Clare will be discharged from Early Intervention in six weeks, but we have already arranged with her OT to continue feeding sessions once or twice a month. They have a good rapport and her OT is enthusiastic about coming up with new ways to get Clare to at least explore different foods, so I feel comfortable continuing with this route.

Since Clare was already evaluated by OT, PT, and speech last month, the school department only needed an evaluation done by a special educator. The educator did the same tests that Clare has done a million times, and Clare certainly acted like the kid that has been there, done that. For example, the educator asked Clare to stack blocks. Clare stacked two, gave a bored look, and questioned, "All done?" For each activity, Clare did the bare minimum, then stated "all done." She would then sit in the little chair with her chin rested on her folded hands on the table and just stare at the educator until a new activity was presented. I thought it was rather comical. I am not too concerned about what the educator writes up because Clare's January evaluations are very thorough. The next step is to meet with the school department's team, go over the results of the evaluations, and discuss Clare's placement in the preschool. Then one week after that meeting (which is in early March), we will sit down with the team again to write Clare's IEP. Six weeks and counting until the first day of school.

One day and counting until the weekend!

Valentine Fund

Valentine's Day is naturally a day that is connected with hearts. While we are thinking about hearts, we always think about the heart that needs our help and support the most - Clare's heart.

"The Williams Syndrome Assocation was formed in 1982 by, and for, families of individuals with Williams syndrome. The WSA is the only group in the U.S. devoted exclusively to improving the lives of individuals with Williams syndrome and their families. The WSA supports research into all facets of the syndrome, and the development of the most up to date educational materials regarding Williams syndrome." (from the WSA website) The WSA has helped our family personally by hosting events where we have had the opportuntiy to meet other individuals with Williams syndrome and their families. The WSA also bestows grants to researchers such as Dr. Carolyn Mervis, who we took Clare to see this past November.

With your help, our dream of a better future for individuals with Williams syndrome can become a reality. Please send your love to Clare this Valentine's Day in the form of a contribution to the Williams Syndrome Association Valentine Fund. You can view Clare's Page here. Happy Valentine's Day!

The Picture of Health

Simon is an oddity in our house. He has never been to the pediatrician's office for anything other than his well-baby visits. Unbelievable! I get questioned about how much he weighs, and I proudly declare, "I don't know!" He rarely gets weighed! He takes no medication, has no diagnoses, and is the picture of health.

So when some little bumps appeared on Simon's skin recently, I chalked it up to a mild reaction to recently introducing dairy in his diet. We cut out the yogurt, but the bumps did not go away. Then I realized that it was eczema, something that Jamie battled in his infancy as well. It was not until the rash spread over his entire body that I thought something more might be going on. Simon is child #3 and we have seen many illnesses come through our house, so I figured that Simon had a little virus that ended in a rash, which is common. Then his eyes started to goop, and the rash on his cheeks became quite painful-looking. So I finally decided to call the pediatrician and have them take a look at Simon.

And don't you know it, it's not just a rash. In fact, Simon has Hand, Foot, and Mouth Disease (complete with blisters in his mouth and throat as well as the full-body rash), an eye infection, a skin infection around his eye from the resulting drainage from his eye, impetigo on his face, and fluid in his left ear (which is not an ear infection yet, so hopefully that will go away on its own). Each of those individually is really not a big deal and we have had each one in our house at some time. But not all at once. To the same kid. So now Simon is on a bunch of medications, including one to fight staph infection (not that he necessarily has one, but impetigo can be caused by staph, so the pediatrician wants to make sure it gets treated ASAP).

Through it all, Simon remains my sweet, happy baby. He is having trouble sleeping at night, but the doctor said his mouth blisters could be more painful at night and a dose of ibuprofen before bed would help him sleep better. In fact, he was grinning away the entire time the pediatrician was examining him. Hopefully in about a week, he will be the picture of health once more.

Potty Talk

Potty-training... going fabulously! I was super nervous about even training Clare because she is... (whisper) a special needs child. With Jamie, we did the whole "sit-on-the-potty-get-an-M&M" routine for a couple months when he was about 2 years old with small success. Then Clare was born, life got crazy, we moved, and potty-training took a backseat. Or as I like to call it, we took a more laidback "when-he's-ready-to-train-he-will" approach. And Jamie did. Woke up one morning shortly after his third birthday, wanted to buy Spiderman underwear (which we promptly did), and was trained in two days. It was almost too easy. So I've been having internal freak-outs about training Clare.

One thing I knew for sure was that I was not going to use Clare's handicaps, delays, special needs, whatever as an excuse. I borrowed a couple books from the library about "toilet training your child with special needs." And there was nothing in there that was "special." Nothing! Everything they talked about was stuff we did with Jamie, which made me laugh. It also made me realize, once again, to treat Clare normally. Obviously we were not going to start physically training Clare until she could actually walk herself to the bathroom. But I started talking about it with her everytime I changed her diaper. There has been lots of potty talk in our house lately! Then we brought out the little potty and just sat it next to the big one. One day, I asked her if she wanted to sit on the potty. She emphatically stated "no" and left the bathroom. I casually asked again a couple days later and received an even louder "no no no." I had one more trick up my sleeve before taking a break. Elmo and M&M's - Clare's two favorite things. I asked Clare if Elmo could go to the potty and get an M&M. She was all for that idea. So she solemnly watched as Elmo sat on the little potty, then proudly received an M&M. Clare wanted a turn. Fully clothed, mind you, but sitting on her little red and blue throne was enough for an M&M reward.

Flash forward a few weeks, and Clare has graduated to refusing the little potty. She insists on only sitting on the regular toilet (with her potty seat on top or else I think she would fall right in!) and almost always pees. She even asks now to go "pee on potty" and, if I ask her about it, she dances around singing "potty emmies potty emmies." (Her word for M&M's.) She eagerly wants to sit on the potty now. We are working towards the big deal of doing the #2, but I am so pleased with Clare's progress. She is still two months shy of turning three. Another teaching lesson for Mom - don't shortsight my kid. Don't make excuses for her. Let her be a normal kid - potty and all.