A Block for Clare

I received an e-mail today that Clare's block for the Congenital Heart Defect Awareness Quilt Project was created.

I had submitted an application for the block months ago, but had forgotten about it. After a long day at the cardiologist's today (more on that later when I am not so brain dead), it was a pleasant reminder to receive the e-mail with a photo of the finished block. Once Clare's block is put into a quilt, they are going to send me a photo of the quilt as well.

The CHD Quilt Project is a very special project to bring awareness to the world about congenital heart defects. Each quilt is specially made of 42 different blocks. Each block is personally made for an individual born with a congenital heart defect. The application asks to tell something about the child the block is for. I wrote that Clare's nickname was "Clare Bear," she loved ducks and her cats, plus looked adorable in the colors yellow and blue. Thus her block was created! Included is her birth date and diagnoses as well.

Thanks to Noel who passed along the link on her blog many months ago! If you are interested in learning more about the quilts, go to CHD Quilt Project.

The Perfect Man

You awaken me at 5 am simply because you cannot stand another moment without me.

You smile and laugh at everything I say to you, no matter how dumb or silly it is.

When I leave the room, you cry and cry until I come back to you.

You think every meal I make you is the most delicious you have ever had.

I am your favorite person in the world.

You are content to sit with me no matter what we do - read books, fold laundry, watch "Survivor."

You are my grocery store companion late at night.

You love me just the way I am. And I love you, my perfect little man!

Finally - Some Good News

Clare's cardiologist thought the site looked better. There is still a pool of blood under the wound, but the doctor listened to it (which I thought was interesting!), checked Clare out, and pronounced that Clare was now really on the mend. The only two things that were slightly concerning were that Clare's feet were blue when we went in (which hopefully was just due to the cold air this morning - it was an early morning appointment) and her blood pressure was very low (about 30 points below Clare's normal). We don't have to go back to the doctor until next week. (A week between appointments - WOW!)

The cardiologist also finally determined that we are officially taking Clare off the Plavix, her blood thinner. We have been waiting for almost two years to hear this news. As long as her cath site looks good next week, we will start her on aspirin therapy. Hopefully our "battered" child will stop looking like that soon!

Not Quite There

Clare's spirits are much better the last two days, but she is not healed yet. One of her cath sites is pooling blood under the incision, so her cardiologist is monitoring her closely. We were there yesterday afternoon so the doctor could have a peek and will be going back in tomorrow morning because the lump has grown slightly larger. I am praying that we are not sent back to Boston to address this problem. I know the cardiologist is worried that the wound is not healing properly and infection might be setting in.

We still have not heard when Clare's next cath is expected to be. Clare has her full battery of post-cath tests (EKG, chest x-ray, echocardiogram) next week, so the cardiologist should have the recommendation by then. We did talk about the fact that Clare's renal arteries were not looked at during this past cath. The cardiologist was not happy to hear this. I got the feeling she does not want to wait until Clare's next cath to have this done. So Clare may undergo a sedated MRI in the near future to look at those arteries. Unfortunately, this would mean another trip down to Children's Hospital because her cardiologist does not feel comfortable having Clare do it locally without the proper back-up, "just in case."

Here's to better news tomorrow!

On the Mend

No more fevers, no more vomiting, no more funny heart rhythms - Clare is on the mend! The pediatrician yesterday said she was not dehydrated and ran a couple EKGs which were faxed down to Boston. The docs there said the EKGs were at baseline for Clare, so all was good.

Today, Clare is ten times more improved than yesterday, but she is still very tired. She ate some dinner last night and started walking again this morning , so we know she is feeling better. Her cath site in her groin is still bleeding, though, so we want her to take it easy for the next few days, so that clots properly. We're getting back to normal.

Photos: 1-Morning of her cath, Clare is fascinated by the big fish tank in the lobby of Children's Hospital.
2-After swallowing her "happy drink," Clare chills out in her cool get-up.
3-Post-cath, Clare snuggled with Elmo until she fell asleep.
4-Wearing more cool shades from the hospital, Clare is waiting to be discharged.

The Full Dish

We came home yesterday. Here's the scoop from our hospital stay. After hours of waiting, the cardiologist who assisted in Clare's cath finally made it to our room. (Clare's primary interventional cardiologist NEVER updates us - brilliant man, poor people skills?) And, of course, it was during the ten minutes that Shawn was eight floors below grabbing dinner. The cardiologist apologized that no one spoke with us sooner, but she was scrubbed in on another case and thought that one of the other doctors would have talked to us. Unfortunately not.

There is good news and "not so good news." The good news is that four of Clare's proximal left pulmonary vessels were successfully dilated. Three of Clare's proximal right pulmonary vessels were successfully dilated. Clare's echo four weeks ago measured right-sided pressures that were 200% those of her left side (a normal heart should only be 25%). The cath showed that the right pressures were actually only 100% of the left pressures. Not stellar news, but pressures that are equal is MUCH better than pressures that are double. Post-cath, the pressures measured 70%. It's a lot of numbers and very technical heart lingo to explain it all, but that's basically the gist of it. Clare's entire aorta looked fabulous.

The "not so good news" is that the right pulmonary side (which was what they worked on in the June cath) was much more narrowed than expected, given that her cath was only 3 1/2 months ago. Therefore, the doctors had to spend time re-dilating those vessels and did not have time to work on any of Clare's distal pulmonary vessels on either side. Also, they were unable to have a look at Clare's renal arteries since she was already maxed out on the amount of dye her body can tolerate once they were done with the dilations. So Clare is returning to the cath lab in the near future. We do not know exactly when (we will find out when we see her NH cardiologist in a couple weeks), but the Boston cardiologist predicted 3-9 months from now.

Clare went into the cath with low blood pressure and dehydration, so she did have some "blips" in there. (Such a nice, innocuous term for something that, in reality, is more serious.) I kind of feel responsible for the dehydration bit, given that we were instructed to have Clare drink 2-4 ounces of water two hours prior to her cath to prevent that very thing. So I diligently woke Clare up at 4:45am and had her snuggle in bed with me to drink some water. However, Clare was very sleepy, did not want to drink water, and was more interested in falling back asleep on me. I was able to get her to take a couple sips, but once 5:00am hit, I had to cut her off from any more water, as that is when her NPO started (no more food or drink). I do understand (as does any parent) that I cannot force Clare to drink. I just wish I had been more successful in doing so. Regardless, this dehydration and low blood pressure resulted in Clare receiving dopamine and a blood transfusion. She did have some funny rhythms in the cath (again, I love the word "funny" that the doctors use at the hospital to describe something much more serious), most likely due to the fact that they are snaking all sorts of tiny objects through her blood vessels!

All this added up to a somewhat successful cath. Clare's fever finally broke around 2am the night after her cath. Shawn said it was a miserable night for everyone. Clare had some funny rhythms again overnight. This time, most likely due to the high fever. She did have some vomiting post-cath as well, but seemed a little more like herself on Saturday with her heart doing what it is supposed to be doing, so she was discharged.

Shawn and Clare are at the pediatrician's right now because Clare is still vomiting, not eating, and barely drinking. There is worry of dehydration, especially because Clare needs to stay hydrated so her body can filter out the dye (or it can harm her kidneys). After more throwing up this morning and no eating or drinking, we called the hospital. Rather than driving down to Boston to wait in their emergency room, we chose to see the pediatrician here. If Clare is dehydrated, they can send her over to the local ER for IV fluids. Children's Hospital also wants the pediatrician to run a couple EKG's to make sure Clare's heart is not acting up again. So I am waiting to hear back from Shawn (or see them walk in the door) on what's going on.

A Brief Update

Just a quick update since I know people are anxious to hear how Clare's cath went, but we are exhausted. I promise to write more once we are settled again.

The doctors did a lot of work in her pulmonary arteries, but thankfully no stents were placed. So Clare is now on the cardiac floor, not the ICU. There were the expected and unexpected bumps during her cath, but it is over, and that's the positive thing. Right now, Clare is very uncomfortable. She has a high fever and cannot keep anything down (not even water), so Clare and Shawn are in for a rough night (Simon and I just arrived home and will head back to the hospital in the morning). Both are not a surprise given the amount of anesthesia and dye Clare received during the cath. The cardiologist resident said that if the fever is gone by the morning and Clare can keep some breakfast in, then she will be able to come home tomorrow.

Thank you again for all the prayers. Please keep them up. Although the cath had some positive aspects to it, Clare still has a long road ahead of her.

P.S. Thank you, thank you, thank you to Kerry and Brady (and Kerry's mom) for stopping in BOTH DAYS and hanging with us for a little while. I know after a long day at the doctor's and fighting Boston traffic, you just want to go home. It was wonderful to see your smiling faces (and Brady's grumpy, tired face at times!). We're glad Mr. Brady had such a great cardiology appointment!

Our Peanut is Doing Well

Clare is in her cath now and so far so good. She was first case today, which meant a super-early morning for everyone, but also meant that Clare did not have to wait long sans food before being taken in.

Yesterday was a busy pre-op day with all the usual running around and multiple tests. All this hospital stuff has forced our children to be fairly easy-going and portable, so both Clare and Simon were good little troopers. (Jamie was at home basking in his hours upon hours of alone time with Auntie Erin - children's museum, slushies, blueberry bubblegum, and a rare treat of a can of Sprite - I wish I got to stay home with Auntie Erin!) The doctors were all very positive about Clare's cath and the outcome of it, which lifted our spirits somewhat. We ended up staying in Boston overnight, so we did not have to endure another hell of a three-hour car ride into the city (a ride which should only, based on miles, take 45 minutes - traffic is another story).

We arrived at the hospital this morning at 6:15am. (Yawn.) Clare was in her glory. I am continually impressed with how well she does sometimes. After a long day, late bed, early morning, and no food, I was a BEAR. (Shawn and I never eat on Clare's cath mornings since she cannot eat - how cruel is that to be chomping down on an egg sandwich while your daughter is starving.) But Clare was having a great time. The hospital lobby was fairly empty, so she walked around everywhere. Our parents arrived, so Clare was even happier surrounded by adoring grandparents. Once she was brought into the cath lab, she was given her "happy cocktail" of ketamine and versed. (I will have to post photos once we are home. Clare was ultra-mellow after her drink and insisted on wearing the hospital johnny, way-too-large latex gloves, and green sunglasses. It was very funny!) Shawn and I said our good-byes to our sleepy girl and handed her over to the anesthesiologist.

We just had our hourly update, and Clare is doing well. She has had some blood pressure drops, which they are controlling with dopamine, and is already receiving one blood transfusion. The cardiologists have started using balloon dilations in her left pulmonary arteries. The nurse reported that "there is a lot to do," so Clare will be at least another couple of hours in the cath lab. Thank you, everyone, for all the prayers. We know Clare is in good hands here at Children's, and even better hands with God.

The Stuff We Don't Talk About

Shawn and I had a good cry together last night. Clare goes back into the hospital on Thursday this week for her cardiac catheterization on Friday. She has come through five caths already, so I know her track record is good. Yet with each looming cath, the fear creeps back in. I hold her longer, find more patience with her toddler obstinacy than I thought I had, run my fingers through her curls and kiss her smooth cheeks as often as she lets me. I relish in her big toothy grin, blowing me kisses and waving bye as she rounds the corner into another room.

(There is a pattern in my blogs - nights that Shawn is out-of-town, I find myself in the basement alone, thinking these thoughts, depressing myself. When I really should be in my bed, watching a movie, and eating ice cream. So, you may want to take the opportunity and do that now. I am not making excuses for my thoughts. I am warning you that they are dark, and I need to get them out.)

Lately, we have noticed that Clare desperately needs this cath. She has high blood pressure but the fact that she could not pump any blood out at the blood draw last week signifies low blood pressure. I know her blood pressure must be all out-of-whack again (my medical term for it). I know her heart is working too hard. But tell that to a 2-year old who has recently learned to walk. Who finally has the means to explore this great big world (or at least the first floor of our house). She does not want to stop. Clare wants to go, go, go. But the fatigue is there. And with the fatigue comes crankiness, frustration, and tantrums. Tantrums which drive my stress level through the roof because I can visualize what it is doing to her heart. Add to that a 4-year old who understands his parents are on edge about something (which to him comes out as snappish and short-tempered) and so he responds to these undercurrents with his own outbursts of anger. And then add a normally happy, content 4-month old who is experiencing his first virus, complete with fever, rash, and diarrhea, so he is inconsolable unless he is held and nursed around the clock. The equation adds up to one mommy and one daddy who are maxed out at the moment.

In church yesterday, we were sitting behind a middle-aged couple we often sit near (the gentleman is the same one who I caught holding hands with Clare one time). Clare has charmed this man, so he always has a smile and greeting for us. I imagined arriving at church without Clare, being questioned by this gentleman about her absence, and explaining WS, her heart defects, and her passing. At the same time, while the congregation sang "On Eagle's Wings" (a beautiful hymn which is often played at Catholic funerals... "And He will raise you up on eagle's wings, Bear you on the breath of dawn, Make you to shine like the sun, And hold you in the palm of His Hand"), Shawn was imagining that hymn being played at Clare's funeral. Why do we imagine these things? I tell myself that it does no good to dwell on the depressing. Yet part of me feels that if I can plan these scenarios out, walk myself through them, if someday, I am forced to actually live them, I will be prepared. I know this is a big fat lie.

Today I read an article in Brain, Child about the death of a child. (Yes, I question why I am reading this article when I am already thinking morbid thoughts, but I forced myself to not be a wimp and finish the article.) The author writes, "Before becoming a mother, I never knew that having a child means crafting not only a life but also a death, that each of my babies would carry within him or her not only the potential for death but the inevitability of it." I was too new a mother when Clare was born to know what motherhood was like without the very real presence of death lurking in the background. When Jamie was an infant, I followed all the advice about preventing SIDS. I cut his grapes in half to protect from choking. I never left him unattended in the bathtub. Yet I never thought anything would really happen to him. The mantra is that that happens to other families. But the reality with Clare is that it just doesn't happen to "others." It may be us. And I know I am trying to come to some sort of terms with that knowledge.

In all probability, Shawn and I will outlive Clare. Given the severity of her heart defects, her average lifespan is 50 years old. Younger than my parents are now. That's a hard pill to swallow. But what I wouldn't give right now to be guaranteed those 50 years with Clare. Fifty wonderful years. I don't care if she still lives with us, is a bagger at Hannaford, whatever. I just want those years. All the years I can get.

Confessions of a Furry Red Monster Lover

Clare is in love. And, yes, he is furry and red. I am always amazed at the affection for Elmo that seems to instantly spring up in our house. Maybe it's those big googly eyes? That annoyingly high voice? His big never-ending grin?

When Jamie was about 20 months old, he started talking about Elmo. He did not watch Sesame Street, we had no Elmo paraphernalia, never talked about the little guy. But, sure enough, Jamie knew who he was and pointed him out in stores, in magazines, anywhere he saw Elmo. (Maybe it's pre-programmed into modern toddlers' heads.) He received a large Elmo as a Christmas present and they were immediate best friends. We did not, however, go overboard with collecting Elmo gear (unfortunately that phase would come later with ninja turtles and superheros). Jamie had an Elmo-themed party for his second birthday and a couple board books - that's about it. So although Elmo was Jamie's constant companion for about a year, we were not on Elmo overload.

Flash forward two years. Lo and behold, Clare knows who Elmo is as well. She has seen maybe one episode of Sesame Street (as Elmo is now too babyish for Jamie, Clare watches "older" shows with him such as Dora and Backyardigans). I do not even know where our two Elmo books are on the shelf. Jamie's former beloved Elmo is buried in the back of the stuffed animals. We have been Elmo-free for at least a year now. But, for some reason, Clare can recognize Elmo anywhere as well - she points and says "Elmo" whenever she glimpses something that even kind of (sometimes not really) looks like Elmo. A new generation of Elmo-lovers has begun.

Clare has been having "violent" temper tantrums for a few months now. I say "violent" in quotes because I do not know quite how to describe them except she needs to hurt herself during them and cannot calm down on her own. She often pulls her hair or bites her fingers and will scoot on her back across the room until she can hit her head on something hard, such as the wall or piano. Her OT and PT explain it as she needs the sensory input as a coping technique during a tantrum. Well, obviously, we don't like that she is hurting herself and do not want that to escalate, so we have been looking for other ways that Clare can soothe herself. Especially for the future when Mommy and Daddy cannot be there with her to help her calm down (such as when she goes to preschool). Enter Elmo. He is Clare's new transition toy. We found the cuddliest, softest Elmo we could find and purchased three of them (one for upstairs, one for downstairs, and one for on-the-go).

We were unsure how Clare would take to this because, although our kids have favorite toys, none of them has ever had a "lovey" that they have insisted go everywhere with them. The three Elmo's appeared in our house and the connection was, once again, immediate. Clare's face lit up, she uttered one word, "Elmo," and a friendship was made. Now Elmo goes everywhere with Clare. He can be seen either dragging along behind her or cuddled in her arms throughout the house. He is showered with hugs and kisses. He sleeps secure in her crib, snuggles with her in the car seat, and, yes, he is thrown and bitten during tantrums (better than biting herself!). So Elmo is doing his duty right now. Thank you, Elmo.

School Daze

Jamie's first day of school. It was a big day for us! We started our new tradition of taking "first day of school" photos on the front steps. When we pulled up to the school, Jamie bounded out of the car, slung his backpack over one shoulder (he explained to his old, old mother that this was the way the kids carried their backpacks - as if I had never been to school and wore my backpack oh-so-cool), and walked ahead of us into the building. He graciously allowed us to take more photos and pin his name tag on him, then he bestowed kisses on everyone and entered the classroom. He never once looked back.

When we visited Jamie's preschool for his open house, we trooped the whole crew in. Clare did fairly well playing with the older kids (it is getting easier now that she is walking) and instantly latched onto a baby doll and carried it around with her. But then she became tired and cranky, so she sat in the stroller in the hallway to eat a snack. (The room was too small for the 19 preschoolers, parents, siblings, teachers, and our double stroller.) I stayed in the hallway with Clare and Simon, while Jamie sat with his new classmates for snack time, and Shawn stood with the rest of the parents for some final information on starting school. I strained anxiously to hear what the teacher was saying to the parents while keeping an eye on Clare and Simon and craning to watch Jamie eat his snack and interact with his new friends. I was very proud to hear him say politely, "Excuse me, I did not get a drink" as the juice bottle passed by him. I was trying so hard to peek between the adults to watch my boy. And it struck me - I would not be able to watch Jamie at school. I would not be there physically with my eyes and ears to see what went on in his school day. I would have to rely on Jamie's word and his teachers for what he was doing in school. Oh sure, he will bring home beautiful art projects and tales of other students. I will have a chance to discuss his progress with his teacher and peruse his folder of work on Curriculum Night. But I will no longer be present at these events. I am now a bystander instead of a participant in part of my son's day.

I stood at the door of Jamie's classroom for a few seconds, watching him instantly start to play trucks with another boy. I desperately wanted to go in there with Jamie. Walk him to his seat, pour his juice for snack, help him choose his colors at craft time. Instead I have to trust that he is okay. He has wonderful teachers and he has the skills and values that we have instilled in him to get him through his school day. I am proud of the caring, smart, funny young man that we are raising. And it was time to let him go into the world independent of Mom and Dad... just a little bit at least.

While Jamie was at school, the four of us headed over to the hospital for blood draws. We are participating in the Williams syndrome research study going on out of the University of Nevada. They sent us a kit to return with blood from Clare, Shawn, and me. After making call after call to find a place that would draw the blood without orders from a doctor and let us keep the blood to send it out ourselves (since we had the kit and all the materials for shipping), we finally discovered our local hospital's outpatient lab would do it. Since Shawn was already taking the morning off work because it was Jamie's first day of school, we thought it would be the perfect time to head over to the hospital. I called FedEx to arrange a pick-up for the blood since it needed to be in Las Vegas the following morning. At the hospital, the phlebotomist put a little wrench in our plans when she announced that, at 20 pounds, Clare could only have 10 cc's of blood drawn per their guidelines. The genetics lab, however, wanted 16.5 cc's - almost double. After having the lab manager talk to a doctor at the hospital, discuss the situation, and discuss Clare's condition, it was determined that Clare was "hemodynamically stable" for the full blood draw (we learned a new term today!). That was when Clare's veins threw a huge wrench in the plan. After fishing around in the right arm with no luck, the phlebotomist tried the left arm. Although a big vein was found, Clare's body would not pump the blood out. No matter what the phlebotomist tried, no blood would come out. So Shawn and I had our blood drawn, took our little tubes with us, and were on our way. I was fuming in the car on the way back to school to pick up Jamie. Two hours in the lab, countless phone calls to set all this up, and lots of stress. To do it all over again in the near future. As Shawn reminded me, "The only thing you can't control is life."

So today was a big day for all of us. Not surprisingly, Jamie loved school. He cannot wait to go back on Friday. I am happy that at least one person was spared the torture of the hospital blood lab today! Jamie will finally not have to come along to all the countless appointments we have, since I can schedule them during his school time. Next week, Clare and I start swim and gymnastics classes, so she is going to enjoy her time as well. And Mommy and Daddy are learning to let go. One small step at a time.

My Day

My day:
- Jamie wakes up at 5 am. This is after a night of getting up every 90 minutes because Simon is going through a growth spurt.
- Simon has two explosive bowel movements requiring complete clothing changes and baths. The second one also requires a complete clothing change for the defenseless mommy he exploded on.
- Clare falls for the thousandth time. This time, however, she splits open her lip again (after doing this already on Saturday). Shawn walks in from work to find Simon screaming in the playpen, Clare screaming and bloody on my lap, and Jamie frantically following my orders of finding diaper wipes and tissues to staunch and clean up the blood.
- Clare pees all over the bathroom floor after she is done with her bath. More laundry to throw in with the poopy and bloody clothing. Might as well make it a whole load.
- Shawn and Jamie call for me to come upstairs. Clare has a stomach ache from eating too much chocolate and almost throws up. (Both Shawn and I allowed Clare to have two big pieces of a Hershey's candy bar after dinner, not realizing that the other parent had done the same.) I sit with Clare and the "spit-up bowl" for a while.
- I return downstairs to find the kitchen sink overflowing with scalding water. It seems I forgot that I was running water to soak some dishes prior to being summoned upstairs.
- One last huge temper tantrum from Jamie because, by the end of the day, he is so exhausted from being up at the crack of dawn.

On the other hand, this is my day as well:
- Simon has his four-month photos done at the photographers. All the kids behave beautifully and Simon's photos come out gorgeous.
- Both Clare and Simon take a 3-hour nap at the same time. I actually am able to scrub my shower, do some laundry, concoct a marinade for steak and shrimp kabobs, and bake banana chocolate-chip bars.
- Jamie and Clare receive packages of stickers in the mail from Grand Dad. The only thing more exciting than mail is mail that comes with stickers.
- Jamie, Clare, Simon, and I take a walk on a sunny, breezy early fall day. Jamie and Clare love riding in the wagon, and Simon takes in the view from the front carrier.
- Shawn makes s'mores on the grill, which we all enjoy after a fabulous dinner outside.
- Jamie and I make homemade Cherry Garcia ice cream. Yummy!
- Clare stands up from the middle of the floor all by herself. She is proud to do it again and again for everyone.
- Jamie and I get his backpack ready for his first day of school tomorrow.
- Jamie, Clare, and Simon are all fast asleep in their bed. Now it's my turn.

Skinned Knees

What my world has come to when I am actually excited that Clare suffered her first set of skinned knees on the playground this morning. Whooo hooo, Clare!

You Know You're Getting Old When...

you sprain your wrist and almost break your neck while attempting to turn a somersault in the living room as part of a game you are playing with your four-year old.

Listening Skills

Do people really even listen? I was in the checkout line at the grocery store, and the store manager walked by our bagger. As he walked, he asked the bagger, "How are you?" The bagger replied, "Not that good." The manager brightly said, "That's great!" and kept on walking. Did the manager even hear what the bagger said? Was this some kind of joke I missed? It made me start wondering about listening to people and really hearing what they say. I am often asked, "How is Clare?" We went to a barbecue in honor of our former pastor a couple weeks ago. Since we no longer attend this church, it had been months since we had seen many of these people. The "Clare question" came up frequently. A couple weekends ago, we were at a birthday party and, again, I heard many people ask, "How is Clare?" Sometimes I am at a loss for what to say. What do people really want to know?

I have my short answer of, "Clare's doing great. She started walking and is so thrilled to be mobile." That is usually enough to satisfy most people's question on the status of Clare. But there are many times, when I am attempted to say, "Clare's not really doing that well. She has started walking, which is so exciting, but her heart is giving her trouble. We notice she is very tired most of the day. Her fatigue causes her to be more sensitive and easily frustrated, so we deal with many temper tantrums. Especially over eating. Mealtimes are a battle with Clare. Her heart is working so hard that even going outside on a hot day is a disaster. Which is hard on the rest of the family because it makes summer outings that much more difficult. And that's been tough with Jamie, who loves to be outside and wants to go to the playground and swim in his pool around the clock. So every day is a battle of conscience for me. Make Clare miserable for 30 minutes so Jamie can have his bit of sunshine, but then keep Jamie cooped up in the house for the rest of the day, so Clare does not go into cardiac arrest. The cardiologist made us so scared about keeping Clare out on a hot summer day, that we have forgone the rest of our summer activities - no beach, zoo, parks. Thankfully fall and the cooler weather is in the near future as well as Clare's catheterization in two weeks. We will be glad to have all that behind us. But, I guess, Clare is doing okay."

I just feel incredibly selfish and rude if I burden other people with our worries about Clare. There are many people who do share our worry and pain (mainly our family), and I already hate casting that shadow over their lives. I know people truly do care about Clare and our family, and that is why they ask the question. Yet how much do they really want to know? I think I need to revise my short answer to something like this, "Clare is hanging in there and making progress, but she could still really use your prayers."

Change of Season

Fall is in the air. The nights are cool again, the days are breezy, and September is around the corner. I love the change of seasons. Here in New Hampshire, each season is so different and beautiful, and fall is my favorite. After a hot, hazy summer, I am looking forward to apple picking, baking, the gorgeous crimsons and oranges of the leaves.

Jamie starts school in two weeks. I am pretty sure I am not ready for that. I was out last night with two good friends, and we were discussing having babies and raising children. One of my friends (who has four children - the youngest is almost 6 months old and the oldest is starting kindergarten this year) explained how she loved the different stages of watching her children grow, yet she still treasures each and every new baby. I liked the way she phrased it because I feel that is so true. My little boy (who is not so little anymore) who used to be my baby is getting ready to go to school. It is a bittersweet time. I am excited to have this new stage of our life unfold. We had fun shopping for a backpack and school clothes. We are going to Jamie's open house next week at his preschool to meet his teachers and fellow classmates. I am already planning our fall schedule - moving Clare's OT to Mondays while Jamie is in school, signing Clare and I up for swim lessons and a Mommy & Me gymnastics class. I am eager to have this time to do activities with Clare and Simon. Yet, at the same time, I feel weird planning events without Jamie involved. Having never sent my children to daycare and very rarely being away from them, it is odd (and sad to me) that Jamie is now going to have this part of his day that does not involve me. Is he old enough already to be doing this? I know Jamie is ready for school. He cannot wait, and I am happy that he is a confident, secure, social child who will blossom at school. But I am going to miss him so much! I will miss his silly knock knock jokes. I will miss watching him patiently teach Clare how to play Hungry, Hungry Hippos. I will miss having my helper bring me a burp cloth, diaper, or pacifier (time to start training Clare!). I will even miss playing Teenage Mutant Ninja Turtles over and over again all morning long.

(Okay, enough, he is only going to be gone for 2.5 hours three days a week, but it sounds like an eternity to me!)

The Good, The Bad, and The Ugly

The Good - Clare not only walks now, she walks holding onto items (her favorite being to bring me countless measuring cups from one of the kitchen drawers - I never realized I had so many measuring cups), she can pick stuff off the floor and stand back up, and is working on standing up by herself from the middle of the floor. She has mastered pulling up, so now she needs a little more work on her balance to get up off the floor. I am awestruck at what she has accomplished in about a week. Her PT was here yesterday for Clare's feeding team follow-up and then here again today for her session. She noticed more improvement just over one day. We keep using the phrase that something just clicked with Clare.

The Bad - Of course, with more walking comes more tumbles. Clare is not as afraid to fall anymore, but she does get banged up quite a bit. She concentrates so hard on walking that she does not always see things lying in her way. Little items can trip her up as can the thresholds from room to room or simply going from the hardwood floor to the rug. One of her PT exercises is to get Clare to take more notice of her surroundings and potential obstacles so she does not fall so much!

The Ugly - And with the falls come countless bruises and cuts. Currently, Clare is sporting a cut lip, scraped chin, huge bruises on her elbows and knees, and smaller bruises scattered in different place. We had her cardiology exam and echo this morning, and I showed her cardiologist all the bruises and explained that everytime Clare gets cut is a bloody nightmare (literally) because of the Plavix, Clare's blood thinner. When Clare was first put on Plavix (at five months old), it was to prevent blood clots in her stents. She was not put on aspirin (which is much more common) because Shawn has a severe aspirin allergy. We didn't need that complication if Clare was found to have one as well. Clare's cardiologist feels Clare still needs a blood thinner, but is willing to explore other options. So six weeks after Clare's next cath, we are going to try a low dose of aspirin. I am very nervous about this, but if Clare has no reaction and can tolerate aspirin, she will do better with the bleeding out issue and won't look like a battered child every time she has a fall.

It has been a busy week for us. As I said, the feeding team came out yesterday for their follow-up. I dreaded this visit because Clare has made very little progress since they were here six months ago. In some areas, she has gone backwards with her eating. Without going into all the mundane details, what the swallow specialist sees is that there is some serious sensory processing going on when Clare eats. Clare is so fine-tuned to everything she puts in her mouth that she can find the tiniest piece of carrot in vegetable cream cheese. So many oral exercises are being added to Clare's OT regimen - we have silly straws, horns, kazoos, bubbles, dippers, mesh feeders. Plus we are going to start serving at every meal three things that are different tastes, temperatures, and textures (the three T's) and encourage Clare to alternate between the three. Since Clare flatly refuses to eat fruits or vegetables, we also have to become pros at hiding them so she gets the nutrients (since our smart girl also refuses to drink Pediasure, Carnation, etc. and prefers the simple vitamins over a more complex one with all the vitamins and minerals). Clare will notice one carrot shred in her pasta - however, Shawn successfully pureed a carrot so well and mixed it into Clare's mac & cheese, that she had no clue. The color was slightly different but the texture was identical, which is key, or Clare will reject it. This morning, I pureed two banana slices into her beloved milk. The taste was only slightly altered, but Clare did not seem to notice. One carrot and two slices of banana - yea! It's a small accomplishment. (I put some of this boring info in for my fellow WS-mommies in case you are facing similar issues.)

Despite all our struggles and frustrations with eating, Clare is growing. Since her last cardiology visit two months ago, Clare has gained one pound and grown one inch (very good for Clare!). She is also finally growing out of her 12-18 month clothing and jumped two shoes sizes! We are excited about all the growing she is doing, although we have to have her AFO's adjusted because she is growing out of them as well.

So now all the medical appointments will slow down for a couple weeks until Clare heads back into the hospital next month. Her echo today showed that she needs more dilations done to her pulmonary arteries. The pressures on the right side of a normal heart are usually 25% compared to the pressures on the left side. Clare's right-sided pressures are 200% of those on the left. The right side of her heart is bulging into the left, it is working so hard. Other than minor fatigue (which we think is due in large part to her increased activity) and having a hard time with the heat (the heat increases her cardiac output), Clare herself is doing well, so we will hang in there until mid-September.

Walk the Line

Tonight, I was sitting on Jamie's bed waiting patiently (or trying to be patient) for him to return upstairs from his mission of choosing which two precious toys he wanted to take to bed from his gazillion superheroes. Clare was sitting in her crib babbling at me and reading her story books. I was marveling at how far she has come in the last few weeks. At Clare's IFSP evaluation in June, we planned our goals for Clare and talked about her transition to preschool. We threw around some options for what we could do for Clare in case she was not walking by next spring (such as wheelchair, walker, etc.) so she could have some mobility at school. And, here I sat, after a day of watching Clare walk all around the house, around my friend's house, and even outside on the uneven driveway and street for a puddle walk today. At dinner, Shawn and I talked about how tomorrow at Clare's OT session, I was going to discuss with her OT ways of helping Clare pull to standing so she did not have to depend on us to put her there every time she fell on her bum. As I sat there with my thoughts wondering, I realized that Clare was standing in her crib with a huge grin on her face. I asked her if she could sit down and stand up again, and she did it. She did it over and over with Jamie, Shawn, and I cheering her own.

It is normal to have dreams, hopes, and goals for your children. I just never had to write these goals down before. But every six months or so, here we are discussing finite goals for Clare and committing them to paper on her Individualized Family Support Plan. A plan I sign that down the road is a testament to Clare's successes and failures. Our walking goal for Clare was her second birthday in March, then my sister's wedding in June. When those events passed with no walking in sight, I shelved that goal for a while. I knew Clare would walk eventually, and I was setting myself up for disappointment each time my deadline came and went. When a few weeks ago, Clare started to cruise, I hesitantly thought about how neat it would be if Clare was walking by Halloween. I could picture her in her little Supergirl costume (yes, Supergirl because Jamie has already decided that he will be Batman and Simon will be Spiderbaby), carrying her trick-or-treat pumpkin, and walking down our street. I cautioned myself about getting too carried away with my daydreams. I never believed Clare would be walking by the end of the summer.

As we gear up for Clare's six catheterization, I can recite the laundry list of what is "wrong" with Clare. There is an even longer list of what can go wrong. Yet despite all these lists, I still choose my child and the wonderful (if, at times, very stressful) life we have because of her any day of the week. I don't know what the future holds for Clare or what she will be capable of. It's a fine line we walk between having our hopes and dreams for Clare, yet not letting those hopes and dreams cloud over who Clare really is. Allowing Clare to be who she is, not who I expect her to be. And all this at the same time as not underestimating Clare and what she is capable of.

At the end of each day, I reflect how I have this amazing opportunity to watch Clare grow and learn and be whoever she is going to be. I look forward to the future of all the possibilities and potential Clare has to show us. I will still hope and dream, but I will also listen to Clare and let her lead the way.

Clare's Catwalk

Oh my, this girl is on the move! She is walking up a storm. She will now walk almost all the time, bypassing furniture, and just take a brief break at a chair or table before walking again. Now Clare needs to learn how to pull up and stand up on her own! To think that three months ago all she knew how to do was roll.

My Baby

Dear Simon,

We are blessed by the joy of a baby in our house again. I forgot all the wonderful feelings and experiences that come from having a baby:

How sweet you smell, even when we forget to bathe you for a couple days because we are so busy chasing your brother and sister into the tub.

How one big grin and one little giggle can make my whole mess-of-a-morning beautiful again.

How determined you are to roll on your tummy (which you accomplished) but cannot figure out how to roll back (still working on it!).

How, even though you are only three months old, you have your own (loud) opinions about what you want (such as NOT to be put into the bouncey seat so Mommy can take a shower).

How warm and snuggly you are when you are tired and want to nurse or rock to sleep.

How one slobbery, smiling, lovely chunk of 16 pounds can make our family so happy.

We love you, Simon!

Here and There

If you asked me if I like summer, I would probably say "no" right away. Being a very, very white girl, I could never stand the sun and heat. I always get at least one major sunburn each summer. The heat makes my head ache and my face flush. I am miserable. My freckles come out in droves. Someone said to me the other day (who was just as fair-skinned as I) that she keeps thinking she will wake up one day, all her freckles will connect, and she will finally have a tan. I laughed because it sounds just like me!

Now that we have children (and a 4-year old who soaks up the sun), I spend many days outside. I actually sport a small tan (and, yes, I have had my major sunburn already). We have had an incredibly jam-packed summer with more to come. At the end of the day, I am exhausted and ready for bed, yet I look forward to the next day and what it will bring. I am actually enjoying summer! Last week, we had two outings to the zoo (different zoos with different sides of the family). I love that both Jamie and Clare are at an age to really enjoy themselves on our family trips. We have seen such a difference in Clare this year with our summer outings. She is still very heat- and sun-sensitive, but as long as we keep her cool, she wants to be active and involved in all we do. At York's Wild Kingdom, we ended the day on the rides. The super big slide was voted hands down the best ride there. (You know the kind of slide that's taller than your house and you get to sit on a burlap sack so you go extra fast.) Clare sat on my lap the first time down. She was very unsure as she watched her brother and cousin go screaming down the slide. Our turn came and off we flew. Although I could not see her facial expressions, when we stood up, she looked at me, and hopefully signed, "More?" How can you resist? Just like Jamie and their cousins, Clare went down the slide again and again. Thankfully Auntie Becky was willing to go on the spinning rides with Jamie. After doing the Fun House, I was all set on rides, thank you.

Clare is gaining her confidence back with walking independently. After her two bad falls a couple weeks ago, she has been reluctant to let go of hands and furniture. But this past weekend, she walked repeatedly between my dad and Shawn. Since coming home, she walks around much more. We do see her stamina wavering towards the end of the day or after walking around a bit. She spent a couple hours on a playdate yesterday (her first playdate by herself - no Mommy or brothers with her - what a big girl!), and came home totally exhausted and went right to bed for three hours. We don't know if it's the increased walking or her heart acting up again that is the cause of her fatigue. If it is her heart, we're not worrying too much because she has an echo in two weeks and her next catheterization is scheduled for September 14.

This coming weekend, we are driving down to the Worcester Ecoterium to participate in a Congenital Heart Defect day with other children who are or were patients at Boston Children's Hospital. Although we have done many WS events now, this will be our first "heart" event. I am always amazed at the number and variety of heart defects there are and how many children suffer from a congenital heart defect. It is events like these that reinforce how blessed we are to live where we do and that ensures Clare receives care from the best of the best.

Small Victories

We triumph in the small victories:

* Jamie has graduated to the next level of swim classes. He is now proud to be a Ray (or sting ray, as he informed me).

* Taking all three children to a children's theatrical performance and no one cried! (With two children sitting on my lap for the majority of the show.)

* Simon is sleeping in his own crib, in his own room, almost through the night. And that goes for naps, too - no more napping in the car seat in the dining room.

* Finally figuring out the best way to go grocery shopping with all three children and still have room in the shopping cart for more than just a gallon of milk.

* Clare has started walking. Albeit slowly, sometimes while complaining loudly, and not all the time, Clare has started walking.

Life is good.

More Boring Videos

Summer has been so fly-by-the-seat-of-my-pants busy that we are living life instead of blogging it. Mostly. We are off on more adventures tomorrow, so here are some more "boring" videos of our three beautiful children (in order), Jamie, Clare, and Simon.

Chew On It

I had previously written a long post about whether or not we were increasing Clare's services. Then I deleted it because it was long and boring and basically my thought process in words. Plus I just finished printing out Clare's hundreds of pages of medical records for the WS doctors she will see in the future. So now I am brain dead. Aahhhhh....

Shawn installed cabinet locks, toilet locks, and the gate on the stairs this weekend because Clare is on the go. She took a couple bad falls last week (one resulting in a bloody nose and the other in a cut lip) so she has been more cautious this week. I did find Clare in the bathroom on Sunday - the toilet lock is doing its job in keeping her out of the toilet. However, I found her unrolling the toilet paper at lightning speed with sheer joy on her face. Yes, Clare, you outwitted us this time!

Shawn and I are still mulling over whether to add more services into Clare's week. I did discuss with her PT at length what Dr. Mervis said. We have decided to continue OT on an every other week basis since there are many things that Clare still cannot do on an OT level - stack blocks, sort shapes, dress herself, to name a few. We may increase that to OT every week and possibly get her on the waiting list for speech once a therapist opens up. Yet nothing is set in stone. I do not want Clare's life to be dominated by hours of therapy a week. I want her to be a normal child, too. We stay extremely busy all year round with various activities, outings, and playdates. I don't want to sacrifice Clare's therapies to a busy life, but then I don't want to sacrifice having fun, getting out, lounging around at home, keeping my sanity, etc. to being a slave to OT, PT, speech, educator, whatever. Plus Shawn and I do therapy with Clare all the time. Almost every activity during our day is some kind of therapy when you think about it. Maybe it's not hard core for an hour, but we work on walking, sitting up, play games, make animal noises, name objects around the house, play with blocks, puzzles, shape sorters, all that stuff. So Clare IS receiving therapy even when she's not.

I have started freaking out again about Clare's weight. I admit I am freaking out over something I have little control over. In the past few days, I have noticed how painfully thin Clare is. She was only wearing a diaper the other morning and, as I watched her play, I had a hard time looking at her because of her bony ribs and shoulder blades. There is not an ounce of fat on her. The swallow specialist and nutritionist return in two weeks for their follow-up with Clare. (Which I know is the primary source of my freak-out.) Clare is a tad more adventurous in her new love for dips (mainly anything sour cream based), but other than that, we have seen no progress in her eating. I want to be able to show them how great Clare is doing eating-wise, but it's just not true. At the WS picnic, we observed that the majority of the children with WS were equally as thin as Clare, but that still does not make me feel better. It is so frustrating to not be able to get your child to eat - especially your extremely underweight child. She still has difficulty chewing and swallowing and much food ends up coming back out of her mouth. Mealtimes have become a battle with her. We are experimenting with putting the high chair away this week, and Clare is joining us at the table in a booster seat in an attempt to make eating fun. Dinner tonight was finally food-throwing, temper-tantrum free, but her eating still was not stellar. As I so eloquently put it at the beginning of this post, aahhhhh.....

For Family Only

No, not really, but, unless you're our family, you may be bored by countless videos of our seemingly adorable children. (And probably our family is bored by them, too!) We do not live near either set of grandparents or any aunts, uncles, and cousins (yes, our children now have more than one uncle - hey there, Uncle Tee!). Sometimes a month will go by before we see our parents again. The kids grow up so fast that I am a huge camera and video hound. So these videos are for you - Mimi, Papa, Grania, Grand Dad, Auntie Becky, Uncle Brian, Auntie Chrissy, Uncle Tee Jay, Auntie Erin, Jasmine, and Alex. We love you and miss you!

Revolving Door

For the most part I try to stay positive and upbeat and enjoy my life for what it is. But there are those moments when I feel as if I am stuck in a revolving door and cannot get out. (Which, somewhere deep down inside, I admit I HATE those doors - have you ever tried to get through one with a double stroller??)

Towards the end of today, I was once again stuck in the revolving door. Shawn and I have not seen too much of each other lately due to long days at work (him), marathon doctor's appointments (the kids and I), and now he is up in northern Maine for a couple days. As I was catching up with him on the phone today, I began to feel incredibly depressed. Just little things catching up with me.

Clare's orthopedic surgeon wants Clare to have a neurology consult. As he stated, this is not an emergency, but he wants to make sure there is nothing neurological going on with Clare. I don't want Clare to have this consult because I am afraid that they will find something (what, I have no idea). I asked the orthopedic surgeon if he felt this was absolutely necessary, and he said he did. He started to list Clare's "problems." As he stated it, she has something going on with almost every system in her body - cardiac, endocrine, orthopedic, gastrointestinal. So he feels it is best to have a baseline neurological exam done to rule out any other issues.

Dr. Mervis from Kentucky called this afternoon to confirm Clare's visit with her in November. She started to ask questions about the services Clare receives. When I told her it was PT every week and OT every other week, there was stunned silence on the other end of the phone. Dr. Mervis was aghast that Clare was only receiving those services. She said Clare should be receiving OT every week plus speech therapy every week. She does not feel we should be waiting until we see her in the fall to get these additional services into Clare's IFSP. That Clare really needs to be doing this now. As she bluntly put it - if a typical 2-year old did not string two words together, they would be in speech therapy. Individuals with WS have the most trouble with their fine motor skills. (I think she basically thought that what our therapists have been saying about Clare's fine motor skills being acceptable was BS and that these programs are usually understaffed and thin-budgeted, so they're looking for the least services to give a child.) These are the two areas in which Clare's services are minimal or non-existent. For the first time, I realized that I may not like hearing what Dr. Mervis has to say about Clare. It's not that I agree or disagree with Dr. Mervis, but more therapy? We just cut down on Clare's therapy and thought she was doing great (which she is). At the same time, though, I don't want to do anything that would be a disservice to Clare. Dr. Mervis stated that now is the time to have Clare receive as much as she can because it's not as easy once she starts school.

So the Mommy Guilt has now kicked in. It's always something new to deal with. Clare has PT tomorrow, and I am going to discuss with her therapist about the possibility of adding services. I see a future of always fighting, fighting, fighting to get what my child needs. Maybe it won't be that way, but tonight I don't want to fight anymore. My energy is sapped. Ironic that the doctors want to do more and I don't want that, and the therapists want to do less and I don't want that either. When will it end?

I treasure my precious few alone moments with Simon these days. His needs are so few and so simple. Something to eat, someone to cuddle with and smile at him, and someone to change his diapers. These are needs I can easily meet. As Clare gets older (and Jamie, too), sometimes I feel as if I am not adequate enough to meet their needs. There was a 40-year old woman at the picnic this weekend who was there with her mother. As they were leaving, the daughter said to her mom, "I behaved well, didn't I?" This is one of those days, when the giant chasm seems to open before me. That I will be that mother, forever with my child who will never grow up. And it makes me want to cry. Cry because I don't always want to be that mother. And then cry because how could I feel that way about my child? Appropriately, I am listening to my iTunes as I blog, and the line that Sarah McLachlan just sang was, "I am a trainwreck waiting to happen." That is excactly how I feel sometimes, and I am doing everything I can to stay on track.


P.S. Okay, so the next song in my iTunes is called "Endless Night" from the Broadway version of The Lion King. "I know that the night must end. And that the clouds must clear. The sun will rise." I guess my iTunes playlist really do say something about me.

Working Hard

Clare has been working so hard on getting around. We are so proud of her! I am constantly amazed at how much work everything is for her, yet she keeps on going. The littlest thing we do every day without a second thought takes a lot of effort from Clare. But she is making amazing progress.

We followed up with her orthopedic surgeon yesterday. He said that if this was the first time he had ever seen Clare, he would not have prescribed AFO's - fabulous news! However, this is not the first time. The last time we saw the orthopedic surgeon was right before Simon was born, and Clare was not taking any steps. She has come so far in three months - Clare cruises everywhere. She holds onto walls, furniture, whatever she can use for support and can get pretty much all over the house. The doctor is not sure if the braces have made a difference, but in case they have, he does want us to keep working with her in them. He is having the orthotic man (I have no idea what his official title would be) unhinge Clare's braces so she has more rotation in her ankles. That way she can practice her sitting and standing while in her braces (something she cannot do with the ankles hinged because they are too stiff). We are going to re-evaluate Clare's need for her AFO's over the next couple months and follow-up again in December. At the end of the day, Clare does roll her ankles in when she is tired, and the doctor said we can address that with supports in her regular shoes once she is walking all the time. But for now, the braces will help with that.

As I said, Clare can get everywhere. And, as I have predicted, she is trouble! Although I have many messes to clean by the end of the day, it gives me so much pleasure to watch Clare's joy in making them. She has discovered all the fun things that toddlers get into - my CD collection, Jamie's board games, kitchen cabinets. Anything with many, many pieces is the best. This morning, I heard cries of outrage from Jamie who discovered Clare dropping his toy cars one-by-one into the toilet. This weekend is Clare-proofing weekend.

The most exciting news is that Clare has accomplished two very big goals. She has learned how to sit up from lying down. Her PT taught her the steps to connect her movements about a month ago, but Clare still did not do it by herself. Now she sits up all the time. I love coming into the bedroom in the morning and seeing her sitting up in the crib. And her proud grin tells you how she feels about it, too! Sitting up seems like such an easy concept, but Clare's PT explained to us that a child with flexible joints, such as Clare, does not have that resistance like we do. When a "normal" child rotates in one direction to start sitting up, eventually their body can go no further and they naturally switch directions and can get themselves upright. Clare, however, rotates in one direction and keeps going because her joints are so flexible (the orthopedic surgeon could almost touch her knees behind her back, that's how flexible and loose her hip joints are). Eventually, she just falls over. Her PT had to actually show her how to stop in one direction and switch to another to sit up. It's hard to explain all this in writing (I had the benefit of a visual demonstration), but the point is that Clare has to learn how to connect movements since her body does not do it naturally.

Clare's other big news is that she has started walking independently! I cannot believe I can even say those words. She does not do it consistently yet, but she is doing it more and more each day. Yesterday, she took about 12 steps to get to Shawn. Her back was to Shawn and she was holding the couch - she pivoted from the couch and walked across our living room carpet to him. We were all cheering! It confirms in our mind (and the orthopedic surgeon echoed this) that Clare CAN walk independently now. She knows all the tricks to do so. She just needs to build her confidence and not be so cautious. She even tumbles quite a bit now and is not scared when she falls. (Unless she falls flat on her face and comes up with a bloody nose like she did in the mall on Monday.) I have been unable to get Clare to perform for the video camera yet with her walking, so this will have to suffice for now!

It's Picnic Time

We attended the regional Williams Syndrome Association picnic yesterday. Since it was in Connecticut, we made a weekend of it and stayed at a hotel with a pool, mini golf, bumper boats, and go-carts. We spent Saturday doing all of the above. Jamie was in heaven! Clare was tired from a long day, but enjoyed herself in the pool. And sweet Simon slept through it all (except for his dip in the pool, which he hated!).

On Sunday, we headed over to the picnic after church. We went to morning Mass at a local church, the same church we went to when we attended the picnic two summers ago. Once again, we found ourselves in the middle of a congregation where our children were the youngest out of the ten children that were in attendance. The church was so quiet you could hear a pin drop - or our daughter passing gas in her diaper! After numerous "shhhs" to Jamie, pacifier-pluggings of Simon, and trips around the small church with Clare, the priest asked if there were any newcomers or visitors. Shawn and I looked at each other - I whispered to him that he had to introduce us because we were not inconspicuous at all and everyone there knew we were not regular parishioners. So he did, and the people were so sweet. The couple in front invited us to coffee and donuts. Although we may blend in better (or hide!) with our large, family-filled parish at home, there is something about the hospitality of a small country church as well.

The picnic was awesome. When we attended two years ago, we were still so new at this Williams syndrome stuff. Clare was only three months old, recently diagnosed, and her first cath was around the corner. To say it mildly, we were a tad overwhelmed. This year, we enjoyed every second. It was great to see families again that we remembered from other events. I finally got to meet one mom that had reached out to me in those early post-diagnosis days. Her daughter was a couple years older than Clare, and she looked just like I think Clare will look in a couple years. Cute as can be! The typical picnic fare of great food, sunny weather, pool fun, and a dinosaur singer was a blast for the kids and grown-ups alike. The WS aspect of the picnic was even better. I do not dread going to these events. The first time, I was very wary of what it would be like to meet other children with WS. It would be a glimpse into Clare's future, and I was not sure I wanted that. Sometimes that glimpse is still tinged with sadness, especially when meeting the adults with WS. But there is no predicting who Clare will be and what she will be like. I enjoyed being with the adults with WS simply because they are who they are. There are no false pretenses. There was one girl who followed me around - I think she was enamored with Simon (who isn't??) and he rewarded her with big, gummy, drooly grins. I heard about her boyfriend, school, and how she loves to swim. Shawn and I both had the chance to chat with many parents about their experiences and get some good tips on our upcoming trip to Louisville. These events remind me that we are not alone in this journey - there are many other parents we can connect with who have been or are going through many of the same things that we are.

The ride home was a long one, but we made it home after two bathroom stops, one dinner stop, much traffic, and chocolate chip cookies.

The Joy Gene

Good Morning America aired a segment this morning entitled "Living with the Joy Gene." It was a seven-minute segment about Williams syndrome and featured a young man with Williams syndrome. You can go to this link and click on the title Cracking the Code of Happiness to watch the clip.

Diane Sawyer begins by asking what if we all felt joy all the time and alluded to the idea that a "mysterious medical condition" may hold the key to unlocking that joy. Diane Sawyer is not one of my favorite news people and her slow pronunciation of the difficult phrase "Williams syndrome" started me off with a sour taste in my mouth. Not a bad segment as a whole, but anyone who has spent a day with an individual with Williams syndrome (or many days, in our case!) can tell you that these children are not perpetually happy individuals. It is an insult to them to imply that they are not capable of having other emotions. Although Clare is still young, we can already see some of the fears, anxiety, and frustrations that individuals with Williams syndrome experience - just like all the other people in the world who do not have Williams syndrome. Yes, they do have an immense capacity for love, as Diane Sawyer says again and again, but they are not that one-sided. To give the GMA segment credit, it was stated that this supposedly unending joy did come at a price and spoke briefly about the young man's heart procedures and his difficulty with fine motor skills, especially with the use of his hands.

I have debated this back and forth in my own mind, and I am glad that Williams syndrome is getting more positive exposure in the media. More and more scientists and researchers are becoming interested in studying Williams syndrome, which will hopefully help Clare and others in the future. It was refreshing to see a positive spin on Williams syndrome (instead of negative views, such as a recent article in the Wall Street Journal which featured a young child with Williams syndrome as the reason why mainstreaming in the classroom is a bad, bad thing). It would just be nice to see a piece that was more multi-faceted to give a true picture of what living with Williams syndrome is really like. We do see so much love and joy in Clare, and we treasure that special gift Clare has to touch other's lives in amazing ways. But it does come at a price.

Need A Laugh

Throughout any given day, there are many moments when I just need something good to make me laugh. Today, Shawn found a good one on You Tube for us. We are huge Harry Potter fans - we are going to see the fifth movie tomorrow night and are eagerly awaiting our pre-ordered copy of the final book - so this was right up our alley... Diagon Alley, to be exact. Enjoy!

The Meeting of the Minds

Kerry and Brady came to visit yesterday. Kerry is the nearest mom I know who has a child with Williams syndrome closest in age to Clare. Brady is 21 months old, so only 6 months younger than Clare and just as cute as can be! We all fell in love with Brady instantly. Clare and Jamie wanted to hug and sit next to him. Jamie kept running upstairs to Clare's room to bring down different toys for Brady. Clare scooted herself right up into Brady's face as close as she could get and chatted at him. She hugged him, touched his face, and tried to say, "Brady." The kids definitely enjoyed having Brady visit for a few hours.

For my part (and Shawn's, who joined us for lunch), it was awesome getting to chat with Kerry. Just to have someone to talk to who understands all we have gone through. Brady's heart defects are not as serious as Clare's, but he has had other medical issues, such as hernias, eye problems (note the adorable glasses!), and orthopedic issues. To be able to use phrases such as OT, PT, IFSP, WS, etc. in conversation and not have to explain everything was such a change. Kerry and Brady recently returned from their trip to see the Williams syndrome expert in Louisville so I picked her brain about the trip (and Clare is now scheduled to see Dr. Mervis herself in mid-November).

Maybe it's wishful thinking, but Shawn and I both agreed that Clare seemed to connect with Brady. She is around other kids frequently and enjoys being in their company, but Clare was fascinated with Brady. It was different than how she is with other children. I doubt if she actually understands that Brady is more like her in many ways than her own brother is, but there was something about Brady that Clare loved. She couldn't get enough of him!

Thanks for coming up, Kerry and Brady! We can't wait to come down to see you.

Choices

We're mulling around with the idea of getting rid of Clare's AFO's. Although I do see that her ankles and feet are more supported in her braces, she seems to be doing just fine without them as well. She is getting fast walking with our support, but AFO-less. She does not like to wear them, so we have been doing "fun" things when she is in them - such as going to the playground or playing with her water table. Clare's PT suggested putting Clare in the AFO's in the evening when she is more tired and has a tendency to be more floppy and roll in on her ankles. However, I am reluctant to push the AFO's too much because I do not want Clare to become dependent on them for walking independently. If she can learn to walk without the braces, that would be so much better for her. Clare's progression has always been slow, but at least she is making progress. She is standing independently more and more. She now understands that by putting movements together she can get places. She loves to practice sitting down and pulling to stand. She cannot do this all the way from the floor yet (which requires many more movements put together), but has mastered it from a little stool to the couch or her favorite is from our fireplace hearth up to the coffee table. By using a combination of rolling and scooting, Clare can get pretty much anywhere she wants to go. Her PT showed her how to connect her movements to sit up from laying down. Although Clare does not do it frequently, we see her getting closer and closer to doing it all on her own. We've even seen her get very close to crawling. Clare has her follow-up with the orthopedic surgeon in a couple weeks, so we are going to discuss this with him.

We're also trying to decide whether or not to take Clare to Louisville, Kentucky to see one of the country's experts in Williams syndrome. Dr. Carolyn Mervis is a psychologist who has worked with hundreds of children with Williams syndrome. Since Clare's doctors and therapists have only worked with a handful, we are interested in getting the perspective of Dr. Mervis. We want to be sure we are doing all we can for Clare and getting her the services she needs, especially since Clare will have her evaluation with the school department's special education team sometime in the next 4-6 months. Before Clare starts school, we will develop an Individualized Education Plan (IEP) with the team of educators. If there is something more that Clare needs, then we want to make sure she gets it. I think input from an expert such as Dr. Mervis would be invaluable.

We went blueberry picking yesterday with friends. I was looking forward to our excursion. We go blueberry picking every summer, and there is nothing like fresh blueberries right off the bush. All did not go as planned, though. We went to a new place and had somewhat of a trudge out to the blueberry bushes. Simon was very unhappy in the stroller, so I had him in the front pack and pushed Clare in the double stroller. Thankfully, we were with other people, so Jamie was able to go ahead with his friends. Picking with Clare and Simon was nonexistent. I took Clare out of the stroller and tried to help her stand with me (with Simon still in the front pack) and show her how to pick blueberries. We had picked a bunch when Simon became really fussy again. I could not keep holding Clare up and keep Simon happy. I popped Clare back into stroller holding the blueberry basket while I comforted Simon. Simon just wanted to eat, though. So I nursed him right there, standing in the middle of all these blueberry bushes. It was a hot, sticky day and very uncomfortable. By now, Clare was starting to throw a temper tantrum because she wanted out of the stroller. She had smashed all our blueberries. I had no idea where Jamie was or if he was having a good time picking blueberries (although I knew he was safe with our friends somewhere down in the blueberry bushes). I was not getting all those wonderful photos I had envisioned for my scrapbook. I was sweaty, headachey, and miserable, and standing there trying to discreetly nurse Simon while getting looks from other pickers because of my screaming 2-year old. (They were probably wondering why I was just standing there with the baby while Clare was throwing blueberries everywhere.) As I stood there, I felt tears come into my eyes. I had those feelings that life was so hard sometimes and I resented the situation I was in. My friends were out there with their kids enjoying the blueberry picking, and here I was, stuck with two unhappy children who could care less about the blueberries. I wanted to burst into tears. All I had wanted to do was go blueberry picking with my children.

As I stood there, it hit me. I could make the choice to be miserable the rest of our time at the blueberry farm or I could choose to make the best of it and enjoy myself. After Simon ate, I wanted Clare to have some of the blueberry picking experience. I realized that Simon was going to be fussy no matter what, so he went back into the stroller. I took Clare out again and sat her on the ground by the blueberry bush. It didn't matter that she was picking the ripe blueberries and the green ones, too. She was having a great time picking them off the branch. Clare and I personally did not pick many. Rather than keeping her out in the hot sun too long, I made sure Jamie was okay (he was, and having a blast, and picking plenty of blueberries for us!) and pushed Clare and Simon back to the enclosed farm stand. Simon was lulled asleep by the movement of the stroller. Instead of blueberries, Clare and I picked blueberry donuts and chocolate chip cookies. We enjoyed our snack in the shade and waited for the rest of the pickers to return. Jamie was excited about his big basket of blueberries. We ate lunch, fed the goats and bunnies, and all shared ice cream before returning home. This morning we enjoyed fresh blueberries for breakfast, and they were worth all the frustration of the day before.

I have had many moments like I did at the blueberry farm. Where things did not go as planned and I felt sorry for myself. Where I wanted to cry and scream about the unfairness of my life. Maybe some parts of my life are harder than others, but everyone has their challenges. I am not going to let my challenges get the best of me. Sometimes they will make me cry and scream, but they are not going to rule my life. I realize more and more with time and experience that my happiness depends on me, not anyone or anything else. I could have chosen to be miserable yesterday and ruin the rest of the day. Instead I made the choice to be happy, wipe away my tears, and take control of the situation. We ended up having a wonderful day, complete with swimming at a friend's house and dinner at McDonald's - what could be better!

The Gregarious Brain

This is an article about Williams syndrome that appeared in the New York Times. Although there are certain phrases I do not like and general assumptions about individuals with Williams syndrome, I thought the article on a whole was an interesting description of a Williams syndrome child's social personality. We are just beginning to see that side of Clare as she grows. She certainly is charming!

The Gregarious Brain

So You Think You Can Dance?

Independence Day

Happy Fourth of July!