Sunday, July 29, 2007

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.....

Wednesday, July 25, 2007

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!

Monday, July 23, 2007

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.

Thursday, July 19, 2007

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!

Thursday, July 12, 2007

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.

Wednesday, July 11, 2007


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!

Tuesday, July 10, 2007

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