Under the Weather

I mentioned in yesterday's post that I was taking Clare to the doctor's because she was sick. She has had a bad cough for a few days now. Jamie had the same cough about a week ago, and it lasted a week. He had no other symptoms and is now cough-free. Then Clare developed the cough. She seemed to be on the mend, but then woke up yesterday morning with a high temperature as well. She was extremely unhappy. Wanted to cling to me, but at the same time, did not really want to be touched. It felt like her heart was racing. She refused to eat and would drink only a little water. All she wanted to do was sleep. We are always more worried when Clare is sick for obvious reasons, so I brought her into the pediatrician's.

I am not fond of going to the pediatrician's office on the weekends. I love Clare's pediatrician and there are many other good pediatricians at our clinic, but occasionally, we get a doctor who seems rushed or brushes us off as being overly concerned parents. And on the weekends, we're at the mercy of whoever is on call. Clare's medical chart states her as being "medically fragile." I would think that alone (never mind her medical history) would make a doctor give us a little more credit when we bring our sick child in. And, for the record, we have never brought Clare in to the doctor's and it turned out to be nothing. Anyway... the doctor was a new one, and he was terrific. He agreed that Clare's heart rate was very high, her oxygen sats were low, and she obviously had the bad cough plus an irritated throat. Although her lungs sounded clear, he ordered a chest x-ray just to rule out pneumonia. Putting a baby through a chest x-ray is not fun. Shawn is usually on x-ray duty when we bring Clare in for her cardiology appointments and she has her heart x-rayed, so this was my first experience with "the tube." I had heard Shawn speak negatively about the tube to the point where he refuses to allow them to put Clare in the tube. Unfortunately, I did not make that connection when the radiologist brought out this antiquated-looking contraption to hold Clare still while she x-rayed her lungs. (I was thinking lungs at this visit, not heart, so it didn't click with me until afterwards when Clare was crying and hating every minute of it.) It's literally this plastic tube on top of a small bicycle-seat. Clare straddles the seat, her legs dangling out the bottom, then the tube is sealed around her (keeping her completely upright) and I have to hold her arms over her head. Then the x-ray film is placed in front of her. All I could see over the film was Clare's eyes. She just looked at me and cried, while I held her arms over her head. I felt so cruel. I know it is for Clare's benefit, but it still tears me up inside. It's much easier to allow the doctors and techs to be the bad guys. But, since it was a weekend, there was no one else around to hold Clare's arms but me.

It wasn't the greatest x-ray, but I refused to allow Clare to be x-rayed again after that agony. Thankfully, the pediatrician was pretty sure he could rule out pneumonia. He also stated that Clare was not in congestive heart failure. Which scared the heck out of me because that had never even crossed my mind! His stating that, though, just made me realize that no matter how small something may seem be, when we feel there is something wrong with Clare, we take it seriously. I would rather be safe and feel like an idiot with the doctor than be sorry. The pediatrician also explained, that although he does not know much about Williams syndrome specifically, it is common that children with these syndromes have abnormally formed sinus structures and, therefore, are more prone to sinus infections. Given her high temperature, he thought that Clare may have a bacterial sinus infection, so he prescribed antibiotics. He also stated the fever would increase her heart rate, but just to keep an eye on it.

Clare is still not feeling great, but she has only been on the antibiotics for less than 24 hours. She has slept most of the day, and when she is awake, is fussy and doesn't want to eat. Hopefully, it is just a sinus infection and the antibiotics will start clearing it up soon. If not, we'll be back at the doctor's in a few days!

The Future

There has been a lot of posting and chit chat lately in my little WS community over what the future holds for our little peanuts. I am not, by any means, diminishing people's fears or worries over the future, but in many respects, I am not as concerned over that. Is that wrong? Should I be more concerned about Clare's future?

Shawn and I are in the process of updating our wills and setting up a Special Needs Trust for Clare. When she is an adult, to qualify for state services (such as SSI, Medicare, etc.), she cannot have assets totaling more than $2,000. That means nothing - no savings account, no savings bonds in her name, nothing like that. A Special Needs Trust will protect Clare when Shawn and I have both passed away by allowing Clare to inherit her portion of the estate in a trust form without running the risk of jeopardizing her medical insurance and income. This is how Shawn and I will be able to provide for Clare once we're gone, without that burden falling solely on Jamie or any other future siblings. Now I think that is very forward-thinking of us! I don't know how many 20-somethings (okay, one 20-something and one 30-something) do that. But being the product of a father who is one of the vice presidents of a life insurance company and a mother who is a wills and estates paralegal, there is some pressure to have this all under control! So I have thought about Clare's future, I am just not freaking out about it.

I don't know what Clare will be like when she gets older. Right now, I can only see the amazing, sweet, snuggly, loving, silly girl that we have. Her personality has exploded over these past few months. She has quite the little sense of humor. Clare thinks that putting any object in her mouth and holding it there, minus hands, is hysterical. She loves to play peek-a-boo. Her new favorite "thing" is Jack the kitty. She is usually attached at my hip these days (a little bit of separation anxiety going on here). Two days ago, she learned that a cow says "moo" and, yesterday, that a horse goes "neigh." (And she will repeat this for you if you ask her a zillion times first!) She has crazy curls popping up all over her head, a nice golden tan, and the most beautiful dark blue eyes. And, right now, she has a hacking cough and a high fever, so we are going to the doctor's this afternoon. That's all I can see right now. That's my focus.

Part of me knows that if I start thinking of Clare's future, I will most likely freak out. And cry. The future is uncertain for any of your children, but when you have a special needs child, I think there is even more of a degree of scariness out there. There is the question of how functional Clare will be. Will she ever hold a job? Live independently? Have friends? Have a boyfriend? And, if the answer to all those questions is "no," what does that mean to Shawn and I? Because, honestly, part of my worries over Clare's future would involve worrying over our future as well. Will we ever be "kid-free" again? Will we always have Clare to care for? And when we're gone, who will care for Clare? Of course, we are starting to get things figured out financially, but that's only a small part of the bigger picture. What about love, support, companionship? It's easier to just not go there sometimes.

Maybe all that worrying would be for nothing. I just don't know. And that's why I am choosing to live in the present. I want to just enjoy Clare's babyhood (what's left of it, since she is already almost 17 months old!). We will cross those bridges when they come.

The Update I Know You Were Dying For

What better way to end a Thursday than an update on Clare's bowel movements? Ha ha ha... But seriously, this issue might come up in someone's future, and I just wanted to let everyone know that the new medication Clare is on (MiraLax) works wonders. For a week now, Clare has not screamed or agonized over bowel movements. Granted, I am doing a little more oxycleaning of Clare's clothes than I was previously, but I will take that any day over the pain the poor baby was in. Sometimes I wish we had just started Clare on the MiraLax from the beginning and spared her the months of pain, but I also believe it is important to try everything else before jumping to medication. I don't know if she's now on the MiraLax for life or just until her diet becomes more varied. Either way, we have a much happier girl around here (except for the fact that she is teething and has a cold right now). I never realized how much time she spent crying because of bowel movements until that crying stopped. Thank God for small wonders.

Just the Girls

It's been just Clare and I these past two days at our house. Jamie went to spend some time with his grandparents and cousins before the summer ends, and Shawn is away on a little business trip. It has been so quiet around here! (Clare does not make much noise yet. And even if she did, compared to Jamie being around, it is like a tomb in this house!)

We didn't do anything too exciting, but our new kitchen appliances were delivered yesterday. I was more excited than Clare, who just wanted to know who the two strange men in our kitchen were. I think Clare was happy to go to bed before I started organizing my new fridge. This morning we did a bunch of shopping (which is easier to do with just Clare). Nothing spectacular - Target, B.J.'s, the pet store, the used book store. Like I said, I am not a girly-girl, but I did indulge on a pack of teeny tiny barrettes for Clare's hair. Her bangs are getting long, curly, and out-of-control. I have finally been successful in getting them in a ponytail and now we're going to try barrettes as well. Although I do not like to dress up myself, it is fun to dress up my little girl! We also ate pizza for almost every meal and played loud music (Clare enjoyed dancing to Cake, although I am pretty sure that the song Satan is My Motor, while catchy, is not the best choice for a good, Catholic girl).

It's been a fun two days spent with Clare. I love getting the alone time with her. She is so cuddly and loves to give me hugs. I think she has enjoyed having me to herself as well, although we're both missing the boys. Peace and quiet is a wonderful thing to have occasionally, but after a while, I am ready to go back to the crazy life again! It will be good to see Jamie and Shawn late tonight when they come home.

Obsessions

I am very familiar with obsessions, having a few of my own - blogging, scrapbooking, Jane Austen movies (my current favorite being the new Pride and Prejudice - there are some scenes where I would have chosen Matthew McFayden over Colin Firth any day - anyway, I digress), mystery series (mainly ones that take place in England, not necessarily British writers, but the plots and characters of Anne Perry, Elizabeth George, and Laurie King are so much deeper - okay, digressing again!). So, yes, I have some obsessions.

The raging obsession in our house these days is pirates. (Hence the pirate name of Jack Sparrow from Pirates of the Caribbean for our kitten.) You will hear a lot of shouts of "Hey, matey" or "yes, Captain" throughout the house (and backyard, car, grocery store, and doctor's office). Sometimes the "yes, Captain" is corrected by a, "I am Captain Hook, not captain." Oh, sorry. Often, Clare is cast in the supporting role of Mr. Smead or Tinkerbelle. Occasionally, if she's lucky, she gets to be Peter Pan. There are swords and eyepatches, spotting scopes and treasure chests, mateys and captains. It amazes me how a kid focuses on one thing and goes crazy with it. Jamie used to be obsessed with dinosaurs - they still rank up there in the number two spot, but pirates it is these days.

When reading up on Williams Syndrome, it often mentions that the children become obsessed with mechanical things - lawnmowers, saws, taking things apart, that kind of thing. One of my other WS-mom friends frequently mentions her toddler son's obsession with wheels. To me, these all sound like boy-related obsessions, so I will be curious to see what Clare is drawn to. Since she just recently started rolling to get to toys, she has been content to play with whatever we give her. For the most part, she still is. She does not show a preference in what entertains her. But we see glimmers every now and then of something that really excites Clare. I can't wait to see what she's interested in. Just please, no princesses. Not being a girly-girl myself, I don't know if I could take that!

I don't know what will pique Clare's interests, but I am sure something will. After all, when I used to gaze at my chubby little 6-month old boy, I never dreamed I would see this at the bottom of my stairs three years later.

Happy Feast Day

Happy Feast Day to Miss Clare! Today is the feast day of St. Clare of Assissi.

When I was pregnant with Clare, Shawn and I were on the fence over a girl's name. While pregnant with Jamie, we had chosen the name Emily if the baby was a girl. Although I still love that name, it didn't seem to fit to me when we found out Clare was a girl during her ultrasound. I didn't know why, but I had this nagging feeling as if we needed to choose a different name. After much debate, we both agreed on Clare Therese (pronounced with the little accent marks over the e's, which I cannot duplicate here). Therese was an easy choice since I am Teresa, my grandmother is Teresa, and Shawn's late grandmother was Therese. Plus I have always loved St. Therese and St. Teresa. When I thought of the name Clare, it just clicked. I have always loved St. Francis of Assissi as well, and Clare was his close friend. If you've ever seen the movie Brother Sun, Sister Moon, I have always been drawn to Clare's character in the movie. Like the name, she seemed lovely, feminine, and delicate, but with a core of strength and courage. Now I know why that was the perfect name for our Clare because she fits that description.

A little history on St. Clare for you: She was the daughter of an Italian count and countess. After hearing St. Francis preach and becoming close friends with him, she was drawn to God and the religious life, founding the order of Poor Clares. Clare loved music. She was humble, merciful, charming, optimistic, and chivalrous. She lived a simple life of prayer and contemplation. The name Clare means "bright" or "brilliant." Today is St. Clare's feast day because she died on August 11, 1253.

Happy Feast Day!

Bummer

We have been taking Clare's blood pressure readings over the past five weeks. During her last echo, her blood pressures were at a good number. However, since Clare was under sedation at the time, her cardiologist did not think the reading was a reality for Clare in her everyday life. One of our goals since Clare's surgery has been to wean her off her blood pressure medication. Since Clare does not like having her blood pressure taken (especially at the doctor's office), her readings are always high when she is not sedated. So we wanted a more accurate picture of what Clare's blood pressure actually is. Thus we've been taking them at home, in the hopes that a familiar, comfortable, relaxed environment would get the actual reading. Since the advent of the lollipop in our house, taking Clare's blood pressure has been extremely easy!

I spoke with Clare's cardiologist this morning, and unfortunately, her blood pressure is still too high to come off the medication. Clare is scheduled to have another echo in a couple months, so we will just see what her numbers look like then. I am not surprised, but a little disappointed. Selfishly, it would have been nice to get rid of that medication. It is the only one Clare is on that is multiple times a day, so by cutting it out, we would cut out three doses a day. Plus then it would mean Clare doesn't have high blood pressure. Just a bummer....

I was also really hoping to start weaning Clare off her blood pressure meds because, yesterday, she had another medication added to her regimen. (Sorry, Clare, for sharing all this info with everyone!) For a long time, Clare has had issues with passing bowel movements. It is extremely painful for her. She screams and cries until it is through. We were at lunch with friends the other day and Clare was trying to pass one during lunch. She just sat in her highchair and cried. When I explained what was wrong with Clare, my friend, looking at Clare, said, "That is so sad. That makes me so sad." And that summed up my feelings. To see that look on her face, especially since she doesn't understand why it hurts so much, makes me so sad. I don't know what Clare's trouble is (the low muscle tone, maybe?) but I hate to see her in pain like that. Plus I don't want going to the bathroom to be an issue with Clare. I am afraid that if she associates having a bowel movement with intense pain, then there will be a hang-up about it somewhere in her future. I have a close friend who has dealt with the same issues with her son since he was a year old. Now, at a few months shy of turning four, she is having lots of difficulty with potty training. She believes it is from his painful experiences when he was younger. He, in fact, is on the same medication that Clare was just put on. Since we first noticed that this was painful for Clare (pretty much since she stated eating solids), we have tried to get more fiber in her diet to aid her naturally in this way. However, she hates juice, will only tolerate prunes a little bit, and is in love with cheese, eggs, bananas, and milk (all good for her weight gain, but not as good for bowel issues!). She eats a lot of whole grain, high fiber carbs, but it is not enough to help her. And we don't want to cut down on her dairy products because that is vital to her brain development and growth. So we've finally come down to medication. It is a powdered stool softener that we mix in with her milk. Luckily, it is tasteless and clear, so Clare does not even know it is in there. It is still too soon to tell (she just started on it last night), but here's hoping for some good results!

The Story of Our Life

Yesterday, Jamie and I took kitten Jack Sparrow for his first vet's appointment with our vet. It was his well-kitty visit to have him checked out by our doctor and receive his rabies shot. Turns out Jack has conjunctivitis, a fever, and the real kicker... a heart murmur.

When the vet was listening to his heart, she took an exceedingly long time and kept moving her stethoscope around. I am quite familiar with that look of intense concentration and listening on her face. When she finally pulled her stethoscope out of her ears, I said, "He has a heart murmur, doesn't he?" Shocked, she replied, "How did you know?" I answered, "Because my daughter has heart defects and you had the same look on your face that her cardiologist does when she's listening to my daughter's heart." The vet was concerned because Jack's heart rate was high as well. She explained that a fever can cause a murmur in a cat, but his heart rate made her think it was something more. So it's another waiting game. We're going to go for a follow-up in two weeks to recheck his temperature and heart. If his fever is gone, but the murmur remains, then Jack will have an echocardiogram. In the meantime, we are going to be watching him for signs of trouble - labored breathing, panting, excessive sneezing.

After I loaded Jamie and Jack Sparrow back into the car, I sat for a moment before I called Shawn to explain our extra-long vet appointment. I just couldn't believe what had just happened. My first thought was, "I can't go through this again. This is insane." And over a cat!! Our roller coaster ride with Clare has finally slowed down somewhat. And I would do it all over again because the end result of our beautiful, happy little girl is absolutely worth it. I love our new little kitten, but I am so wary of going through this roller coaster of emotions, worries, and challenges again with a cat. I can't even believe I am writing all this about my cat. It's horrible deja vu.

Lollipop Queen

So the deck isn't quite finished yet, but it looks beautiful! One of the bonuses of building our deck over zillions of weekends is that we (and the kids) get to spend that time with Shawn's parents. They live in the next state, so we don't seem them that often. Shawn's dad is helping (or guiding, bossing around, something like that) Shawn build the deck. Jamie tends to monopolize Mimi's attention when she is here and Clare is very Mommy-attached, so when I needed to go to Target, I took Jamie with me. Gave us some time together and gave Clare some time with her grandmother without competing with her older brother. When we got home, Clare and Mimi were taking a walk in her little red car (Clare was in the car, Mimi was walking). Jamie returned with a big lollipop, which Clare promptly wanted. So I gave her a little dum dum pop instead. I unwrapped the lollipop and held it out to her. You would have thought it was gold - she snatched that pop out of my hand and stuck it in her mouth so fast! Over the next twenty minutes, Clare proceeded to eat her lollipop. This involved lots of waving the pop high over her head, holding the pop by the sticky part in her hand and waving the stick high over her head, sucking on the pop with no hands and a big grin while shaking her head "no" continually, and red-tinted drool everywhere. When Clare was done with the pop (and she sucked it to nothingness), she was a mess! Red and sticky everywhere! Her hands were so sticky that she closed them into a fist and couldn't get them open again! So right into the tub went Clare. I have to say it was the cutest thing I have seen in a long time and made us laugh so hard. The pure joy on Clare's face from one little lollipop.

Clare also made a big leap with the way she plays. When the Early Intervention evaluators came to our house a few weeks ago, one of the big things they noticed was that Clare would not release toys. She would not drop blocks into a bucket or anything like that. All of a sudden, she has started doing that. I first noticed it when she had OT this past week, but then I couldn't get her to do it again for us. Last night, we had some quiet time together (just Clare and I) before bed. Without prompting, Clare emptied her Sesame Street barn shape sorter, then started putting the shapes back into the barn. She didn't put them through the openings, but would open the barn door, drop a shape in, close the barn door. Open the door again, drop another shape in, you get the picture. Every time she dropped a shape in, she would look up at me with a big grin. Like see, Mom, I know what I am doing! It's such a little thing, but having a child who is developmentally delayed forces you to pay attention to these little things.

When I was pregnant with Clare, a friend of mine (who already had two children) made a comment on how she missed so much of her second child's milestones. She obviously noted the big ones like crawling and walking, but the little ones passed her by because life was much busier with two. Days can be a blur sometimes and you don't realize that your child just learned how to stack rings. This is not the case with Clare. Because her development has been slower (and we're focused on it, especially on the little things such as releasing toys), we have the chance to marvel and clap at Clare's smaller triumphs. To me, that's been a precious gift. To be thrilled when Clare drops shapes in a little barn or laugh till my sides hurt over her joy of eating a lollipop. If Clare was "normal," would I just miss all that? Would it not mean anything to me? I don't know because that is not my life, but it's one more thing that makes me glad I have the life I have. It's a time-worn cliche, but it truly is the little things that count.

Tired But Good

I have been very tired lately. YAWN. So that's why there has been no scintillating post from this neck of the woods for over a week. There is no excuse for my tiredness except my two lovely children (one of whom is cutting her four bottom teeth - and she really is cutting them this time because one of them has broken through), a 4-day migraine, a new playful kitty at night, and temperatures in the triple digits. Now that I've made my excuses, here's what's up in our life lately! (And it took me three days to write this post!)

(Included are photos of our trip down to RI this past weekend to visit my family. We went to Waterfire (hard to explain, but it's this amazing spectacle of lighted braziers on the Providence River) and the theme was Carnivale, hence Clare in the butterfly mask. We also went to the zoo, primarily because of the huge dinosaur exhibit they have. Jamie is obsessed with dinosaurs, but these dinos were a little too real for him and Clare! Which meant that Daddy carried Jamie through the exhibit, and Mommy and Auntie Erin took turns carrying Clare. On a sidenote to a sidenote: although Clare was scared of the dinosaurs and buried her face into my or Erin's shoulder most of the time, sometimes, she just had to peek up at those scary dinosaurs. Then bury her face quickly again! And Auntie Chrissy came up from her new home in Jersey. My sister Christina is who I think Clare looks like, especially with Clare's new glasses! And kitty Jack Sparrow is just too cute not to show him off again!)

Clare is starting to get ready to make another jump in her development. One of my other WS moms told of an analogy of how kids with Williams Syndrome develop - like a staircase. They will stay where they are for so long, then suddenly jump a step. I feel like Clare has been in her plateau forever now; since she mastered sitting independently, which was about six months ago. Clare had zero interest in even attempting to learn to crawl. It was getting so bad that even Clare's OT finally admitted that she didn't think Clare would ever crawl and just skip right to walking. But then, out of the blue, Clare discovered rolling again. She first rolled at four months old, but was not a baby who rolled. Now, though, Clare rolls EVERYWHERE! I never thought I would be so happy to have diaper changing challenges!

Jack is a great motivator for Clare as well. She loves Jack and says "kkkk kkkk" whenever he comes near her. She is very gentle with him and loves to touch his ears or pat his back. Jack will usually sit next to her and let her do this. He is not as kind with Jamie - still runs whenever Jamie comes near! (Smart kitty!) One day, Jack was under Clare's crib peeking out at her. She was captivated. She was on her belly trying to look under the crib, calling "kkkk kkkk." She even scooted up a bit on her knees to get a better look! Clare is still a long ways off from crawling, but the constant rolling and getting on her knees a couple times is a good start. Maybe we just needed a cat to get Clare to crawl.

Since it has been 100 degrees around here lately, we've been doing mostly indoor activities. It is just too hot to play outside. I don't think Jamie would mind - he would run around sweaty and red-faced all day if we let him. If the air conditioner is on and it still says 91 degrees on the thermometer, Jamie says he's cold. Clare and I, however, are comprised of a much more delicate temperament and cannot endure the heat. So indoors it has been. Luckily we had our beautiful weekend of outdoor fun in RI. And it's supposed to cool off this coming weekend, so maybe our deck will finally be finished! (The big summer project - anyone remember our garage-building marathon? It's been kind of like that only on a slightly smaller scale.)

So that's life in a nutshell right now. Nothing terribly exciting, but you know what? That's okay by me!

Welcome to the Family!

S~ Well, after long thought Teresa and I have decided to welcome in a new family member. Now I know a lot of you may be thinking that we have enough on our plates and why would we consider bringing another baby into this crazy house. But we really felt bad about all the babies out there that do not have a home, so we have made the decision to adopt! We found a little boy named Jack who is looking for a home. He is about 13 weeks old and very cute. We brought Jamie and Clare by to meet him and they instantly fell in love with him. So after a brief interview we were give the green light and we brought Jack to our home yesterday afternoon. Jamie was very excited and he picked out a couple of toys for him. So without further ado, I would like you all to meet Jack Sparrow...
Both Jamie and Clare are very enamored with their new "brother". After one full night of exploring Jack is used to us and is becoming very playful!

The Great Guessing Game

For a long time now we have been participants in the Great Guessing Game against our will. We have been dragged into it at the grocery store, the mall, the dentist's office, and, most recently, last night at the playground. What is this game, you ask? The rules are very simple. The game initiator does the requisite cooing over Clare before the Great Guessing Game begins - "She is so cute - she must be [insert ridiculously low number here] months old?" The numbers are all over the board - 8 months, 11 months, and last night's all time low of 3 months. THREE MONTHS OLD??? Are you kidding me? Does Clare actually look only 3 months old? Not that three-month old babies aren't adorable and precious in their own way. But do they sit up tall in the backpack carrier, stuffing dinosaur crackers in their mouth and mushing them into their full head of curly hair while grinning and "chatting" at their older brother on the slide? No, I don't think so.

Then comes our entry into the game - the polite correction of Clare's age ("Oh no, she's actually almost 16 months old") and apologies over her small size ("Yes, she is such a peanut, she does look younger than her age"). After recovering from the shock of how old Clare really is, comes the next phase in the Great Guessing Game. Not to be knocked down by their completely inaccurate guess of Clare's age, the initiator goes onto Question #2 - "Is she walking? She must be all over the house now!" And this where I am at a loss as to what my part is in this great game.

I am not ashamed or embarrassed that Clare doesn't crawl. But I also don't want to get into a long discussion of WHY Clare doesn't crawl or walk with total strangers. Another parent of a child with WS explained that whenever anyone made any comment about his daughter, he saw it as an opportunity to educate that person about WS, in order to increase awareness of Williams Syndrome. I am not sure I am at that level. After the second question (which once I answer it, the game usually ends because it's not fun to always be wrong in your guesses), I usually simply say, "No, not yet, but she's trying." I do not feel the need to launch into an explanation of WS, low tone, developmental delays, heart defects, etc. with every person who comments about Clare. First, I don't want people's pity or that blank stare of "I don't know what to say to you now," if I did elaborate on Clare's condition. Second, quite frankly, it's not their business and I am not about to open up that personal part of our life in the grocery store.

I did, however, decide to take a chance and try to talk about it when I was at the dentist. We all go to the same dentist. Jamie is going for his first visit next month, and I assume Clare will be going, too, someday. So when the hygienist started the Great Guessing Game with me (which is even harder to play when you are stuck with your mouth wide open and a dental pick in it), and came the question about walking, I decided to explain further. After all, this woman is going to see me again and is going to see my children. She may even work on Clare someday. So when I had a chance to answer the question, I started off, "No, she's not crawling yet, she's delayed..." and got cut off from there by more cleaning. Which gave the hygienist the opportunity to lecture me on how Clare is not delayed. How it is perfectly normal that Clare is not crawling yet. How her daughter did not walk until she was 16 months old. Blah, blah, blah. (I admit, I tuned her out at this point. I could not interject a word because of the said cleaning in progress, and I realized this might not be the best audience after all.) And I learned my lesson.

I am not at the point if my life where I am going to educate the world about WS. Most people entering into the Game are not even really interested. And that's okay. Because I am not interested in their life either. They are just being polite, smiling at a cute baby, and making small talk. I cannot even really be mad at their thoughtlessness because they do not mean to be thoughtless. And I am sure, before I had Clare, that I was an initiator of the Great Guessing Game at some point in my life. Having children out in public invites comments. But after being on the other end of that game, I have realized that it's not fun. And I don't plan on inflicting that on anyone else. I will smile and reply politely the next time someone asks if Clare is nine months old. But then that's where it ends as to my participation.

Too Cute Not To Share

What do you do when your baby is SOOOOOO dirty you cannot even make it up to the bathtub upstairs? You improvise, as Daddy does best!!

A Good Day

Today was just one of those really good days. We had nothing written on our calendar to do. I love those weekends! They are few and far between for us, especially since we do not live in the same state as either of our families. Sometime we end up really doing nothing all day long but being together as a family.

Clare and I went to her swim class first thing in the morning. This is Clare's second session of swimming, and she is starting to love it. She gets excited when she sees the water. She splashes and kicks now and smiles throughout the class. Today her swim teacher Joelle got a big smile out of Clare, and Clare even let Joelle take her from me to swim around. I was blowing bubbles at Clare in the water, and she would put both hands over her mouth and try to blow bubbles in the water, too. It was adorable! More and more, Clare is mimicking what we do. Her newest trick is to blow kisses, and she even makes an "mmmm" sound as she does it. Last night, when she was going to bed, I told her to say good night to Jamie. Jamie gave Clare a hug. Then without being prompted or seeing someone else do it, Clare put her hand to her mouth and "mmmm," blew Jamie a big goodnight kiss.

Jamie has been obsessed with going camping lately. We camped often before we had kids and have all the gear. But we're not quite brave enough to go camping for real again yet, especially with Clare. Instead we decided to pitch the tent in our backyard, so Jamie and Shawn could camp outside tonight. We even bought a backyard fire pit, so we could have hot dogs and smores for dinner. After swimming, the tent was pitched and the firewood collected, including some good long sticks for cooking. It was a hot hot day (up in the high 90's), and Clare does not do well in the heat (neither do I), so we went to the movies. We took the kids to see "Cars," the new Pixar film. It was delightful. I highly recommend it! My favorite Pixar movie is still "Finding Nemo," but "Cars" comes close. Especially with the voice of Owen Wilson as the lead car. Jamie was enthralled by the movie. He already has a collection started of four of the cars from the movie (courtesy of one his favorite fast food restaurants), which he placed carefully in a grocery bag to bring to the movie with him. Even Clare was captivated for a good 45 minutes. We entertained her for the rest of the movie with a lollipop (her first official Dum Dum, which she loved - kept taking it out of her mouth and waving it high in the air) and walks around the near-empty theater.

After the movies came camping time. Shawn built a fire and we roasted our hot dogs. When everyone was stuffed, I brought Clare inside for bath and bed. Once she was down, I joined the boys again for smores. When we had discussed camping out with Jamie, I described smores to him. His words to me were, "Oh, I think I love smores." And he did. I don't know which he liked better - having the actual smore fed to him (he didn't want to touch the hot, gooey marshmallow) or eating the marshmallows straight from the bag. Once Jamie had a good sugar high established, I said good night and came inside. The girls are sleeping inside tonight. I can still hear Jamie and Shawn giggling in the tent (well, Jamie is giggling - Shawn would probably kill me if I meant that HE was giggling, too).

It was such a good day. One of those days when I enjoy my life so much. It's these days I hold onto when the rough ones come. These are the days that make all the suffering and trials we go through worth it. Remind me next time I start complaining!

Follow-Up to Myself

In a long, complicated blogging expedition, I came across an article written by Catholic Author, Melissa Wiley. She is an incredible writer (she has written children's books about the ancestors of Laura Ingalls Wilder), and she has a young son with special needs, who she aptly calls Wonderboy.

When Melissa Wiley was expecting her fifth child, she wrote this article about her 2-year old son. It struck me deeply because it almost exactly echoed my sentiments a couple days ago.

"I think about Wonderboy, and I think about this baby who will be joining us in the outside world before long. Eleven years ago, when I was pregnant with Jane [her oldest daughter] and people would ask, "Are you hoping for a boy or a girl?" I’d reply with the standard, "I don’t care, as long as the baby is healthy." This wasn’t exactly true: secretly I was hoping for a girl. Both hopes came true. I delivered a healthy baby girl, and I was so happy, so grateful. This little girl didn’t remain healthy, though. By the time she was Wonderboy’s age, she was fighting for her life. The battle against leukemia was grueling and scary. When nine months after her diagnosis Scott and I learned we were expecting another child, I uttered that "I don’t care what it is, as long as it’s healthy" line with even greater fervency.

And then, two babies later (first our Rose, then bouncing Beanie), I gave birth to a little boy, and he wasn’t healthy. He was, to put it bluntly, rather a mess. Thus began the next chapter of the lesson that started during the long months of Jane’s illness. Being entrusted with the care of a child who is not physically perfect can be, yes, painful and scary, but also one of the sweetest, most rewarding experiences a person can have. Do you know how much they teach us, these small, brave, persevering persons? I hadn’t begun to grasp the meaning of that whole "Count it all joy" business in the book of James until I met these children. Now I get it, or at least I get a glimpse of it. There is immeasurable joy not just in the overcoming of trial, but even — I know it sounds implausible, but it’s true — in the trial itself.

I lay there doing some praying of my own. The baby inside me kicked and kicked; I felt her foot against her brother's back and realized how much my answer to that old question has changed over the years. Of course I hope, for her sake, that she will be a healthy child. No mother hopes for her children to have to walk a difficult road; it is our nature to want their paths to be as pleasant as possible. But no longer could I say and mean (even if I didn’t know the gender of the child): "I don’t care what it is as long as it’s healthy," with its tacit suggestion that an unhealthy baby means only tragedy and sorrow. If that wish had come true last time, I wouldn’t have my Wonderboy. If this child — or any of my others, for that matter, for Jane is proof that being "born healthy" is no guarantee of perpetual good health — should encounter serious medical difficulties, I know now that no matter how hard the road may be, even if it leads through the depths of Moria, it will carry us through Lothlorien, too. And even in Moria there can be humor and camaraderie and courage and hope among the band of travelers — especially the smallest ones."

Sometimes I need the words of others to explain how I feel about my own Wondergirl and this journey we have been on. You can read the whole article here:
http://www.catholicexchange.com/vm/index.asp?vm_id=6&art_id=33641

Bye Bye GI

Clare had her follow-up GI appointment yesterday. Again, I was a little nervous not knowing what her weight was going to be and what the GI would think. Before going to the appointment, though, Shawn and I agreed that we were not in favor of any further supplementation or medication - no added powders to her food, no appetite stimulants, no high-calorie drinks, that kind of stuff. Maybe that sounds like we don't care or don't want to put the effort in, but that is absolutely not the case. We feel that Clare is doing so well, slow weight gain or not. We have accepted the fact that she is going to be a peanut and not put on the pounds as quickly as Jamie did. I know there are many parents out there who are struggling with these same feeding and weight issues and concerns regarding their children and are doing everything they can to find out if there is something wrong or to bulk up their kids. And I don't think that is necessarily a problem. But, to me, Clare is a different case. We know what is "wrong" with her. We know that babies and children with WS struggle with feeding and weight. We know that individuals with WS do not grow to be very tall people (I think the average height for girls is around 5 feet). We know that Clare herself had a slow start with eating solids, has had multiple hospitalizations, and other factors interfering with her gaining weight. We also know that Clare is healthy. Her hair is growing long and curly (and strawberry-blonde, like Auntie Chrissy! On a sidenote, both my sisters are a varying shade of redhead, but I am blonde with no hint of red. So I love it that Clare is showing some of that red!). Her fingernails grow longer than we can clip them. Her skin is a beautiful color and her cheeks are rosy. She is rarely sick with colds or viruses. She is obviously not a little girl who is starving or lacking nutrients. So that was our justification for putting our foot down to any added measures!

The good news is that the GI agreed with us! Clare gained 11 ounces in two months (up to 16 lbs, 12 ounces now), and he was pleased with that gain. I asked him point blank if we had to continue seeing him since there really was nothing he was doing for Clare right now (I put it in a nice way and we have a great relationship with her GI, so he understood where I was coming from!). He said that cardiology likes to have him involved in Clare's care just so something is not missed, but he agreed that Clare was doing great. Clare does not have to return to the GI for six months. We were happy to (almost) knock another doctor off the list!

Clare also had her regular hearing test yesterday. She has made progress in her hearing skills, but is still a little behind. Hearing is developmental as well, so that is not a surprise. The audiologist wants to see Clare again in another three months and hopefully, at this visit, Clare can be discharged from her care. It really is nice to see our long list of doctors and appointments slowly dwindling!

Another Anniversary

Another Happy Anniversary to Clare and us! One year ago today, Clare had her first cardiac catheterization. I can still remember the feelings of dread, nervousness, nausea, I-am-going-to-bite-my-nails-until-they-bleed pit in my stomach that I experienced that day. It was the first time I have ever felt that way about anything. I've had lots of experience with being nervous and uncertain before (who hasn't?), but that was the first time it made me want to scream and scream.

Clare has come so far in one year. (Here's my recurring theme again!) I keep repeating this because I am stunned by it. This time last year, I couldn't see what the future held for Clare. Shawn and I were faced with the reality of coming to terms with our child's own mortality and fragility. My biggest moment of trust in my life (at that time) was when I handed Clare over to the anesthesiologist after saying our good-byes. I didn't know if that was the last time I was going to see my baby girl. I will never forget how all that feels. And I am glad I will never forget because then I won't take life for granted.

Part of this journey so far for me has involved sorting out these feelings and letting some of them go. Deep down inside, I think a part of me will always be waiting for the other shoe to drop. That comes with the territory of having a special needs child. Many expectant mothers and fathers worry over whether there will be something wrong with their baby. I've heard the pat response time and time again - "Do you know what you're having?" "I don't care as long as the baby is healthy." I honestly never expected anything else. When I was pregnant with Clare, I never expected that first shoe to drop. But it did after she was born and her heart murmur was diagnosed. Shawn and I were just absorbing that information and all its meanings when Clare was diagnosed with Williams Syndrome. During Clare's first cath, I couldn't see where Clare was headed. What did God have in store for her? And why?

I will probably never know the full answers to those questions while I am here on earth, but I have started to let that go. Especially since I now have the experience (and hopefully some wisdom) of this year behind me. Because now it doesn't matter to me that my baby wasn't born healthy, that I don't know why Clare has Williams Syndrome or why God chose Shawn and I to parent a special needs child. What's important now is that Clare is our joy and sunshine in our life. Her journey has touched so many people. She has made me a better person - more patient, more courageous, more accepting, and stronger. And that's what I am holding onto now. All the things Clare can teach us about life.

(The top photo is Clare enjoying her yogurt while we picnicked outside on July 3. The bottom photo is Clare in the hospital during her first cath when she was 3 months old. How much she has grown!)

Quack

If it goes quack it must be a duck. And if the sound "du" comes out of your sweet 15-month old's mouth while she's triumphantly holding her two rubber duckies in the air, it must be the word "duck." Right?

Clare's "vocabulary" seems to be taking off now. She was our quiet baby for so long (as opposed to Jamie who has been talking non-stop since he was born!). Now she's quite the chatterer. The majority of it makes no sense, but Clare throws in the occasional "yeah" or "hi" every once in a while. We have been working on animal names and sounds lately. She doesn't repeat any to us, but I continue plugging away because one day she is going to surprise me. And I swear she said duck during her bath tonight. Also, while Shawn was setting up Jamie's bath, I was holding Clare to say good night to him. She leaned over for Shawn and said to him, "Da da." Clear as day. How sweet!

Clare also experienced a rite of passage, at least in our household, as you can see in the photo. A couple nights ago, in desperation of getting 15 minutes to finish dinner without holding Clare (who has been a tad on the grumpy side these days - we're thinking those bottom teeth?), I put her in the Bumbo seat and opened up Jamie's kitchen drawer. I thought she would enjoy taking the cups and bowls out. What I forgot was also in that drawer was the big box of 100 colored straws. And did she have fun! I have photos of Jamie doing the same thing to the same box of straws. (Well, not the same straws, but the box has not changed since Jamie was Clare's age.) The box of straws kept Clare happy for a long time. And it didn't take THAT long to clean it up. So when Miss Grumpy was also Miss Clingy right before dinner tonight? Out came the box of straws and 15 minutes of peace.

Independence

Happy Fourth of July!

(For those of you who have already read this post, I did change the photo. Neither of my kids looked terribly happy in the old photo, although Clare actually was grinning not crying. This photo was so much sweeter and has our adorable goddaughter Allison in it as well.)

We have had a whirlwind Independence holiday this year. In four days, we have done three barbecues, one first birthday party (for a little firecracker we know who we were privileged at being at his birth on the Fourth of July last year), an all-day deck-building extravaganza, swimming in our incredible friends’ incredible pool, fireworks, a Fourth of July parade, and a wicked water balloon fight. Whew! It’s been fabulous!

We brought Jamie and Clare to see the local fireworks last night. The show began, and after a few seconds of uncertainty from both of them, they settled down on our laps and watched the show. Clare was half mesmerized by the fireworks, half mesmerized by the little boy behind us. Jamie intently watched the fireworks, but also chatted Shawn’s ear off the entire time. We were surprised at how well both kids did with the fireworks. (Given that Clare was three months old last year and slept through the fireworks, and Jamie spent the entire time hiding his face in my shoulder!) This is a recurring theme in my life lately – how fast time is flying and how quickly my babies are growing. Yes, they are only 3 ½ years and 15 months, but I still cannot believe they are already that old. Where has the time gone? And, in their own little ways, both Jamie and Clare are gaining more independence. I know this is a good thing that they are learning to be their own person and not just an extension of me. But it still makes me a little sad.

On this holiday of celebrating our history and Independence, I hope my children have the same faith, strength, courage, and determination that our great nation was founded on. May they grow to love and appreciate the wonderful gift this country is to us. (And now I have to go because Miss Independence has decided she's done being independent for the moment!)

My Big Girl

This is a quick one because I have been on the computer for far too long now. Jamie is playing at a friend's house today, and I FINALLY convinced Clare that a nap was a fabulous idea. I am currently in the middle of a big project with some old photos, but got caught up with some new photos along the way. And I just had to share.

On Father's Day weekend, we took a trip up north to Storyland, a wonderful children's amusement park. We went there last year, and Miss Clare (who was a little over two months old at the time) slept for the majority of the trip. What a difference a year makes! After sitting in the stroller and watching Jamie ride some rides, Clare got to ride one as well. We all went on the little train together, and we let Clare sit on the bench next to Jamie. What a big girl Clare thought she was! (And she is getting to be such a big girl.) The pure delight on her face says it all. She was thrilled to be sitting next to her big brother and not on Mommy's lap. I have to remind myself that she is 15 months old (TODAY!) and to let her have some independence. It's easy to forget because we still spoon-feed her, she's not mobile, and she's such a peanut. But Clare is a big girl. And she wants to be treated like one!

Now I would love to know what was going through Jamie's head! What an expression on that face!

Coming Home

Clare, Erin, and I spent the past weekend visiting our grandparents in West Virginia.

When I awoke this morning, I read in my morning prayer book about coming home. About taking a drive through your old neighborhood or seeing your old high school and feeling like you were coming home. This visit felt like coming home to me. Even though I was seven years old when we moved from W.V. to Rhode Island, the mountains must be in my blood and bones. Taking the walk from the house to the cottage (which I personally did about 100 times this trip since I forgot to bring the baby monitor and kept walking to the cottage to check on Clare while she slept) was such a familiar feeling to me. Driving up the incredibly long driveway felt like I did this every day. Even Erin commented that she kept experiencing deja vu. In some ways, it was like we had never left, and we just melded right back into the way of life on the farm.

We had a very peaceful visit with my grandparents. It was our last hurrah there before they move from their incredible farm into a house in town. As kids, we spent summers down in W.V. on the farm. My grandfather would take us to target shoot with rifles and bow and arrows. We would go horseback riding. We would stay up late playing cards or Mastermind with my grandmother. Hikes in the woods, bonfires and camping out on the Point, feeding the huge catfish in the pond, swimming (and playing beauty pageant) in the indoor inground pool. We often visited at Christmas as well. The farm covered in a blanket of snow during the winter is breathtaking. All us grandkids would dress warmly and go hide out in the snow so my grandfather and his German Shepherd Heidi could practice their Search and Rescue. All my memories run together of what an amazing place the Campbell Hill Farm has always been. It has been our vacation destination for 20 years.

We weren't able to get down to W.V. last summer with all the craziness over Clare's multiple hospitalizations. It was very special to me then to take this one last trip with Clare. I liked being able to show her a piece of my childhood, a piece of me. Although she will never remember any of it, it feels right to share it with my children. Jamie last saw the farm when he was 17 months old, so he won't remember it either. My grandparents had not seen Clare for over a year, so they were delighted (and instantly charmed) by her sweet personality. Clare was fascinated by the new scenery around her. Although she was scared of the horses, she loved playing with their hay!) Despite the exhausting 10.5 hours it took us to get home (which should have been a 3-hour trip, but there were many weather delays), our visit with our grandparents was relaxed and uplifting.

The best part about going away? Literally - coming home. When we finally landed around midnight, the two sweetest boys were waiting for us. How precious to be greeted by a little (sleepy) blonde guy who instantly wound his arms around my neck and kept repeating, "I missed you, Mommy." As great as our trip was, I knew then that the feeling I had about coming home in W.V. was outshined by the feeling of coming home to my family.

Evaluation

Clare had her one year evaluation with Early Intervention today. Her occupational therapist, Jessica, came over along with a speech therapist and physical therapist. I was very nervous leading up to this evaluation because Clare has not been officially evaluated by a team of therapists since she was three months old. We would find out today if Clare needed additional services and how delayed she is.

The therapists spent about an hour and a half playing with Clare and testing her skills. Shawn and I answered lots of questions about Clare's daily activity and what she does and does not do. You could tell that the two new therapists were instantly charmed by Clare. (She has that effect on people!) She played shy and coy with them at times and favored them with huge grins. Clare is such an expressive baby that when she is proud or happy over something she's done, it spills over and makes you so proud and happy as well. Clare showed some skills that we didn't even know she had. She did fairly well handling the amount of work the therapists wanted her to do. Clare still does not have the longest stamina and tires easily, so she got lots of little breaks.

After the playing was done, it was the moment of truth. I know I had butterflies in my stomach waiting to hear how Clare was doing. OT evaluated her fine motor skills and self-help skills. Jessica said Clare was doing great, has shown considerable progress, and is right on target for an almost 15-month old. Clare can do all the fancy tricks like transferring objects, bringing her hands to midline, claps, waves, using the pincer grasp to self-feed, and "helping" us to dress her (takes her arm out of the sleeve, that kind of thing). The only "negative" comment Jessica had was that Clare is not releasing objects. Clare will not stack toys, nest cups, or even hand you a toy. Now, personally, I think a lot of this has to do with having an older brother. Once Clare has her pudgy little hands on something, there is no way she is going to let go! So she is facing lots of container play in the future and working on releasing toys voluntarily. (Rather than us prying her iron grip off something!)

PT evaluated Clare's gross motor skills and strength. As expected, Clare is delayed in this area. She has good lower body strength, but her upper body is weak. Much of this is due to Clare's lack of tolerance for tummy time. That has always been a battle with us, especially after Clare's open heart surgery when she had restrictions on tummy time for a couple months. As expected, Clare is delayed in the area of crawling and pulling up. She has mastered sitting and is doing a nice job with rotating her body while sitting. So tummy time will continue to have a starring role in Clare's therapy!

The final evaluator was speech. Also, as expected, Clare is delayed in speech. She is at an 11-12 month level. We have heard Clare's repertoire of noises explode over the last month, so I know she is on her way to talking. Her list of words include "hi," "yeah," "da da," "jay jay" (for Jamie), an occasional "ma ma" (okay, I only heard it once!) and her newest addition - "yup." Her understanding of words is a little more progressed - she will give hugs and kisses when you ask her. She will wave when you tell her to "say bye-bye."

The most startling observation for us (and I think for the therapists) was that Clare's learning skills were on the level of a 16-18 month old (she is actually advanced in something!). The therapist played some games with Clare involving object permanence, and Clare excelled at them all. She found that darn mouse every time! Once Clare sees how to do something or figures something out, she can do it again immediately. After I brush her hair, I let Clare have the brush, and she tries to brush her hair as well. This was such an amazing piece of news to Shawn and I because we do not know how cognitively-impaired Clare will be. This is a glimmer of hope that Clare may not be as impaired as we feared she would.

At the end of the session, the therapists all agreed that Clare did not need additional services at this time. Yippee! Clare is not delayed enough in any area to warrant more time spent in therapy. Her OT, Jessica, will continue one hour of OT a week and focus on progressing Clare's skills in all areas.

So all that worry and uneasiness over two of the big things happening in Clare's life lately turned out to be for nothing. Thank you, God, for that! With the good news from her cardiology appointment and now today's good news, I feel that we are finally hitting a real good stretch of road here. And I am going to savor every last mile of it while it lasts.

Happy Father's Day

Our family has been blessed to have Shawn as the head. He faithfully goes to work every day to provide for us. He has sacrificed time and time again to be with the family. Whether it is to go to doctor's appointments, therapy sessions, or just be there on a rough day, he is always a source of support. This past week, I finally got to indulge in my Mother's Day massage and pedicure. Shawn took the afternoon off work to hang out with Jamie and Clare so I could be blissfully pampered. When I came home, he had already made dinner and it was on the table ready for me. (As many mothers know, dinnertime is the worst time of day, especially with two hungry children underfoot.) That alone earns him a place in heaven!

I knew Shawn was a keeper when he gave up his dreams of pursuing an acting career to get married and settle down. At first, I felt guilty that Shawn would make that sacrifice for me. But he always told me had bigger dreams than that, and I had the starring role. It has been a joy to see Shawn flourish as a dad. He is an amazing father. He is gentle and tender with Clare. She loves to be rocked by Daddy, especially in the hospital. He is also rough and tough with Jamie. They wrestle and tickle and giggle, having the time of their life.

Happy Father's Day, Shawn! It has been wonderful being your wife for these past 6.5 years, and incredible to watch you being a father for the past 3.5 years. Thank you for all you do! I love you!

(I would be remiss if I did not also thank my OWN father for all he has done. You have always been there for us girls, Dad. You have been a role model for how I want my husband to be as a father. I love you, Dad! Happy Father’s Day!)

(Now I HAVE been remiss. I want to also wish my father-in-law a Happy Father's Day. My other "dad" is an incredible father to his two sons, a wonderful father-in-law to his two "daughters," and an amazing grandfather. Thank you, Dad, for all that you do for our family.

Hip Hip Hooray - Another Good Echo

Clare had her sedated echocardiogram on Friday. There was (thankfully) a cancellation before us, so Clare got in earlier than scheduled, wihch meant our hungry, cranky girl had an hour less to wait. Although that created a mad dash to get out of the house, it started the morning on a good note.

Clare's echo was good news to us. That's where the hip hip hooray comes in! Her pressure gradients have not really changed since her echo three months ago. Her aortic arch (where her surgical patch is) is wide open. Her pulmonary arteries have even grown a little bit. And her cardiologist is talking about weaning her off those hated blood pressure meds! (See previous post! Which we finally got squared away, and Clare only ended up missing two doses. She did fine.) Clare did great with the anesthesia. No vomiting afterward. A little crankiness, but she settled down to nurse, then just wanted to go to sleep. The light at the end of the tunnel we've talked about is growing brighter. (I wasn't thrilled with Clare's weight gain-or lack thereof-but I am not allowing myself to worry about that until her GI appointment next month.)

The best news is that Clare does not have to return for another sedated echo for 4.5 months! That would put us in late October/early November sometime. Oh my goodness! We are so excited! That means a summer of rest, relaxation, and recreation. That means we can go to Ogunquit this year and truly have an incredible time. (Last year, we were making every effort to enjoy our beach vacation with Clare's pending cath taking place the following week.) In the meantime, Shawn is going to take Clare's blood pressure once a week. We'll update the cardiologist on Clare's numbers, and see if she can start to be weaned off the meds.

We have the best cardiology staff at our doctor's office. They really do take care of Clare and us. Our fabulous echo tech even set up a room downstairs where Jamie could watch videos in case he came with me and I was alone. Shawn came as well to the echo so we didn't need the room, but we appreciate the efforts everyone makes for us. Jamie doesn't often have the undivided attention of BOTH parents, so he was content (plus he actually turned out to be a little under the weather and developed vomiting and a high fever later on in the day, so he was very cuddly and clingy during our wait).

So, once again, hip hip hooray!

Aggravation

Shawn wrote that beautiful post this morning and I second his sentiments. But now I need a space to vent! So you're going to have to bear with me!

I was so aggravated this morning. It's the little things that get me. Clare is on a blood pressure medicine three times a day. It's a beta blocker that slows her heart down, so it doesn't have to work so hard and, thus, lowers her blood pressure. She has been on this medication for over 7 months (since her surgery) because her pressures were just really high. Last night, Shawn was dosing out her night and morning meds and there was only enough in the bottle for one dose. That alone got me riled up because there should have been another week's worth in the bottle (which amounts to 21 doses). I was also a bit mad at myself because I thought the bottle looked like it was getting low, but it didn't need to be refilled until the 20th, so I thought there would be enough, especially since it was only the 13th. Then the confusion begins.

We get most of our prescription from Brooks Pharmacy. They're close, open 24 hours, and convenient with a drive-thru window (very key with two kids!). They've been great about the majority of our prescriptions. The only problem we've had with them is that they don't regularly stock Clare's blood pressure medication. It was always a gamble with them whether it would take 1 day or 7 days to get a refill. So we chose to have that medication filled at the clinic pharmacy where Clare's doctors are. However, we dose out Clare's meds at 10pm, so the clinic pharmacy was closed by then. Clare gets a 6am dose as well, so we needed her medication that night. To get to the point, I called Brooks Pharmacy because I knew they were open. Well, surprise surprise, they did not have the medication in stock. And because it is a liquid suspension that has to be compounded specially, we would have to wait while they made sure they had the recipe, ordered the ingredients, and compounded the meds. So now we're talking about 5 days. It was worth the phone call, but it wasn't going to happen. (Well, maybe not worth the phone call because I had to deal with a snippy pharmacy tech who told me bluntly that if it was so important that Clare not miss a dose, then next time, I should call the prescription in before I ran out.) No big deal - Clare would be a little late receiving her morning dose and I would call the clinic pharmacy in the morning. They stock the med and can compound it fairly quickly.

This morning, I called the clinic. And I get Rite Aid on the phone. Rite Aid? I was calling my clinic pharmacy. Yeah, apparently sometime in the last couple weeks, the clinic pharmacy closed. They shuttled all their prescriptions over to Rite Aid. Okay, no big deal. Let's look up Clare's prescription and get that filled for you. Now Rite Aid can't locate the recipe for Clare's prescription. It's not in the big recipe book they got from the clinic. They also do not regularly stock that medication. I explained the dilemma to the pharmacist (who was so kind and patient - a very nice man named Jeff who was a bright light in a dark morning!). He said he would see what he could do and called me back. He found a company who he could order the medication through (already compounded), and they were going to overnight it to Rite Aid. So we would have her blood pressure meds at 9am tomorrow morning.

By this time in the morning (barely past 9am), I was already frazzled. Jamie was ready to go meet his friends at the playground. And Clare had spilled out of her diaper all over her Exersaucer (if you get my drift). What fun! My other bright light is Shawn, of course. Clare's cardiologist said she really didn't want Clare off her meds for over 24 hours. If there was no choice, there was no choice. But it wasn't a good idea. While driving to Burlington, Vermont (hours away), Shawn called local pharmacies until he found one that had the ingredients in stock and could compound the medication in hours. He then talked to Clare's cardiologist who wrote a 3-day prescription to this pharmacy, so we can get Clare back on her meds today.

It will hopefully all be resolved today (as of now, though, Clare has still missed two doses of meds). And I will never take it for granted again that a month's worth of meds is actually a month's worth of meds. I was so aggravated. Refilling a prescription should be an easy thing. Ensuring that we get a full month's supply of a medication should be an easy thing. As I've said before, I am under no delusions of how my psyche works. I know I am getting nervous because Friday is Clare's sedated echo. She hasn't had an echo for three months. To us, she seems to be doing great, but you never know what the echo will show. Plus she has to be under anesthesia for it because the chloral hydrate last time only lasted 20 minutes. Any form of sedation and anesthesia is very risky for Clare. Then next week, Clare has her first-year evaluation with Easter Seals. This will be a deciding point in whether one hour of OT is sufficient or if Clare needs more services (such as PT or speech). Plus we will get an official determination of how delayed Clare is. I hate the labels. They're just words, but they still hurt. Then to add on top of that, my sister Erin, myself, and Clare are heading down to WV to visit my grandparents. They are selling their beloved farm which we spent summers on as kids, so we wanted to get one last visit to the farm in before it is sold. Clare has never been that far away from home or her doctors. And on a plane. So I know there is a lot going on these next couple weeks that has me a little unsettled. It's just I can't handle the little things sometimes. I have learned how to roll with the punches on the big stuff. Why not the little stuff?

Parachute Packers

S~So, I just got back from a Sales Meeting in Newport Beach, California. Yeah, I know what you are thinking... OOOOHHHH rough life. However what I did not tell you is that this time of year is what they call June Gloom. It is the time of the year when Sunny California has no sun, none whatsoever. All day and into the night the fog off the ocean is so thick that the sun can't burn it off.

So anyway, that is not what this post is about. During the first full day of the meeting they brought in a Motivational Speaker, Captain Charlie Plumb (we will call him CCP). CCP was an officer in the Navy during the Vietnam War and, five days before the end of his tour of duty, he was shot down and spent six years in a POW camp. The same camp that housed John McCain. This man's story was amazing... purely amazing! He said something that really hit home for me and our history with Clare. He talked about how one day, he was at a diner in a small town when a man came up to him and said, "You're Captain Plumb, aren't you?". CCP said yes. "You were shot down and spent six years in a P.O.W. Camp, right?" CCP once again said yes, then he asked the man how he knew. The man simply stated, "I was the one who packed your parachute."

CCP was amazed - he never even thought of the guy who packed his shoot, and saved his life. He talked about how a parachute packer is someone who selflessly gives of him or herself to help others. This parachute packer was in the bowels of the U.S.S. Kittyhawke packing parachutes for the fighter jocks, who fly the million dollar jets and get all the fame, fortune, and girls. He then said that there are many different types of parachute packers. So it made me think of all the parachute packers I have in my life. All of you reading this. My men's group at church - these guys prayed so faithfully for Clare when she was going through her surgery and every single cath. I couldn't thank them enough. Monsignor Anthony and our family and friends. You are all my parachute packers. And I don't think I thank you enough for all your unending support, prayers. and love. It's easy now as things have slowed down with Clare to forget all that you have done for us. So today I am taking a little time to thank you, all my parachute packers! (to continue on with the metaphor) Thank you for packing my parachute so, as in times of freefall, your prayers, love, and support safe lower me to the ground. Thank you!

Thank You For Walking With Us

Thank you to all who generously sponsored Clare and us for the 2006 Easter Seals Walk With Me last night. The event was a great success (despite the weather - we were out there in our rain gear). We personally raised $2,100 for Easter Seals - an incredible amount (and I think we were the second highest individual fundraiser! Yippee!). Easter Seals is such an amazing organization that helps the lives of so many people, young and old. We are fortunate to have a fabulous OT through Easter Seals.

Thanks again for your support!

Change

Change is so hard. Our family has experienced many changes over the past couple months, especially with moving to a new house and some family issues. Now we are facing another change – this time in our spiritual life.

Our beloved parish priest is leaving our church next week. He has been assigned to a post in the Vatican (yes, in Rome!). Monsignor Anthony has been a tremendous source of support for our family over these past months. He was one of our first visitors in the hospital after Clare was born. When Clare’s heart defects were diagnosed, he willingly moved her Baptism closer, so we did not have to wait so long to have her baptized. He has come to our house and blessed Clare and given her the Sacrament of Anointing of the Sick before every hospitalization. He visited us in the hospital in Boston. While Clare was having her open heart surgery, Monsignor Anthony was leading a pilgrimage of fellow parishioners in Italy. As Clare was in surgery, they were praying for her in Assisi (Clare is named after St. Clare of Assisi). He has always had a smile, hug, and kind word for Jamie. We attended a farewell barbecue for Monsignor Anthony a couple weeks ago, and before we left, Jamie sat on his lap so they could talk. We have been so blessed to have Monsignor Anthony in our lives.

I know Monsignor Anthony is destined for great things, but I am saddened that his journey in life will no longer be part of our journey here in Manchester. Under his wing, our church has grown and flourished, as has our faith. I know both our children hold a special place in his heart, and that he will always be with us spiritually. And if we ever make it to Rome someday, we will have our own tour guide at the Vatican! Thank you, Monsignor Anthony, for being a true friend to our family. Thank you for loving Jamie and Clare – for showing a little boy firsthand how Jesus loved all the little children. Thank you for holding our little girl in your prayers time and time again. May God watch over you as you begin your new journey. We will miss you.

They're Here! They're Here!

At 14 months old, Clare is finally cutting her first tooth. After waiting so long for this event, I expected something grand for the big arrival – fireworks, a parade, maybe a brass band or two. What I did not expect was that Clare would cut FOUR TOP TEETH AT THE SAME TIME! But that’s exactly what she’s doing.

Clare has been cranky on and off this past week, and we have noticed her fingers are always in her mouth – two good signs of teething. Yet since we’ve thought Clare was teething since she was three months old, I really didn’t think this was the real thing yet. At dinnertime tonight, she just wouldn’t settle down and wouldn’t eat. Shawn gave her some Tylenol thinking that maybe her gums were bothering her. The Tylenol did the trick, and Clare ate dinner. When I was getting Clare dressed for bed, I happened to look into her mouth and saw her top gums. (Okay, I was able to look into her wide open mouth because Jamie was giving her licks of his lollipop.) That’s when I saw them – four top teeth breaking through those gums. And from the looks of it, the four bottom teeth are not far behind! No wonder she was a cranky little girl. I guess if you’re going to wait 14 months to get your first tooth, you might as well work on four (or even eight) of them at the same time.

Little Inia

Clare has become a Little Inia. Exactly what that is, I have no idea!

Auntie Chrissy gave Clare swim lessons for her first birthday (complete with an adorable pink bathing suit!). We enrolled her in the YMCA baby class (called the Shrimp Kipper Inia Class) five weeks ago. It's a stretch to say Clare LOVES swim class, but she does seem to enjoy it. The first week, she was all business and very serious about this new experience. We have taken her in a swimming pool twice before, but both times, they were hotel pools and a little chilly. Clare was definitely not fond of those experiences. She has become a huge fan of bathtime now (loves to bounce and splash in her little tub). From taking Jamie to swim classes when he was a baby, I knew that the YMCA pool was the temperature of bathwater, so I thought Clare would at least tolerate it. Now that we have been doing swim for a few weeks, Clare enjoys it more each time. This morning, she kicked and splashed and even smiled a couple times at her teacher.

I have learned that there are all kinds of therapy out there. Occupational therapy, physical therapy, speech therapy, music therapy, pool therapy, equine therapy, developmental therapy, and who knows what else. I have heard other parents say their child receives as much as 10 hours of therapy a week. Clare has one hour of occupational therapy a week. That's it. And right now, that's okay by me. Clare's OT, Jessica, provides great feedback on how Clare is doing. Clare lights up when Jessica walks in the door. Jamie also loves Jessica because she always has a new game or toy just for him. In the busyness of our life, OT guarantees that Clare will have that time devoted to helping her develop (don't get me wrong - we work on Clare's skills outside of therapy, but it's not that structured). Clare's one hour of OT is something we all eagerly look forward to. But I doubt I would feel the same way if our life revolved around therapy sessions. There may come a time down the road when Clare does require more structured therapy. Again, that's okay if that's what she needs to function in this world. But I like the idea of having a little more freedom, especially since we've slowed down on doctor's appointments. I also think it's good for Clare to not have her life revolve around therapy sessions and doctor's appointments. She may be a child with a disability, but she's still just a child and should be able to do the normal things kids get to do.

For now, Clare gets so much out of doing less structured activities. She loves going to Jamie's playgroup because she gets to watch the other kids. (I am learning that peer pressure can be a wonderful thing sometimes! Clare may just want to crawl since she's now the only baby not mobile!) Jamie is a great form of therapy (and entertainment) for Clare. He loves to talk to her and try to get her to mimic him, with sounds and actions. We sing songs and dance around the living room, which Clare loves. And we are enjoying swim class. It is a relaxing time for both of us (even though it's Shawn in the photo, I take her the majority of the time). Clare loves to watch the other babies and hang out in the warm water. And if she gets an occasional kick or splash in there, that's an added bonus. Hey, isn't that physical therapy??

Happy Anniversary...

to us!

It’s been one year (and a few days) since Clare was diagnosed with Williams Syndrome. And it’s almost been one year since we started this blog. In the beginning, I did not know how long it would last. I just liked the idea of journaling my thoughts and sharing them with family and friends. I didn’t know if blogging would be a phase. If we would get too caught up in every day life to maintain it. If I would run out of things to talk about. Apparently none of that happened! Because we’re still here. (And hopefully it’s a good thing that we’re still here!)

What a roller coaster year it has been. Ups and downs. The biggest downs by far have been Clare’s open heart surgery and those rocky days in the Cardiac ICU as well as learning of the recent deaths of two children with Williams Syndrome (one right in the next town over from us). Those are the moments that hit us hard. It brings it back to the forefront (with a slap in the face) how serious Clare’s condition can be. In those moments, I do allow myself to be scared and worried. I cry and hold Clare tight and pray to God that He never takes my precious girl from us. And Clare will usually look at me like I’m crazy lady and touch my face with one little finger. Then I’ll remember why this is all worth it, and that the ups far outweigh the downs. I could start to list them, but the list would be endless. Like this beautiful face!

Clare had her follow-up with her geneticist today. It was nice (in its own way) to have an appointment with a doctor where we waited almost 10 times longer for the doctor to arrive than the amount of time spent with the doctor himself. Nice, except for the restless baby! We are on track with Clare as far as medical care goes and what we should be watching out for, so the geneticist is giving us an entire year before we follow-up with him again. An entire year! Wow!

When Clare was first diagnosed, there were many dark days. I remember other parents of children with WS telling me, "The beginning days (and months) after the diagnosis are bad, but it does get better." That's hard to believe and wrap your mind around when you are still staggering from an incredible blow. When all your plans, hopes, and dreams for your new sweet baby seem destroyed. But you know what? It does get better. It HAS gotten better. I finally feel that Clare having Williams Syndrome is not the end of the world for her - or for us. It's just the beginning of the possibilities that are out there. Maybe that's because we are now open and accepting to the idea that we don't always get to make the plans of how our life is going to go. We can dream and hope and pray, but in the end, it's up to someone else, God. And I am glad He's in our corner!

The Beauty of Holland

I read the following a little while after Clare was diagnosed with Williams Syndrome. At the time, I thought it was an interesting comparison, but I was still in the depths of struggling with the new diagnosis and what it would mean to our life. I re-read it again today on another blog by a parent of a child with Williams Syndrome. Today, it struck me deeply. It expresses my feelings so well on what this journey with Clare and Williams Syndrome has been about so far. So to borrow from the words of another, here is the story:

The Beauty of Holland
by Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this...When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful vacation plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very, very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland.""Holland?!?", you say." What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, 'Yes, that's where I was supposed to go. That's what I had planned.'

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

A Closer Look

A couple weeks ago, we were in the backyard and I noticed a bird had built a nest on the second floor windowsill of our bedroom window. The nest was an ugly, trailing mess of branches and leaves. We have been fighting hornet nests all over the place, and I was appalled by the sight of that ugly nest on our house. I did not want to start fighting with birds as well. I am not a bird fan. Our house is near a small body of water, so there are bugs everywhere. Consequently, there are birds everywhere as well. Did I mention I am not a bird fan?

I immediately went upstairs, intending to knock the nest off the window. I opened the window and pushed at the nest with my hand. It seemed fairly secure. I was getting ready to give it a harder shove, when I actually looked into the nest. This ugly, trailing mess of branches and leaves was smooth and round on the inside. It was beautiful. It was perfect. I marveled at how something so ugly on the outside could be so beautiful on the inside. I stopped my demolition, planning to show Shawn and Jamie the nest.

The next day, I looked out the window and there was a robin in the nest. My movement startled her, and she flew off. That’s when I saw the little blue egg in the nest. I am ashamed that I was going to destroy the nest because I thought it was ugly. How often do we do that? We make rash judgments based on appearances, without taking the time to take a closer look. I am as guilty as the next person. Sometimes we just need to stop and look at things in a different way. One of my biggest fears about Clare’s future is that people will do this to her – make a judgment about her based on how she walks or talks or acts and not take the time to take a closer look at the beautiful person she is.

Life is messy. Life can be ugly. But life is also beautiful… and perfect. And our robin’s nest? We now have three eggs in the nest. Mommy robin sits on them every day. We keep the blinds closed over that window and are careful not to make sudden movements, so we don’t scare her off. We are anxious to see if the baby birds hatch and are grateful that God has given us a glimpse into this amazing little world.

Happy Mother's Day!

S~ Today we honor our mothers. As I sit here, while Teresa and Clare are still sleeping, and Jamie is having his breakfast, I am in awe of the mother my wife has become. Ten years ago, when I was in college, I met someone who took my breath away. She was so full of energy and character, it didn't take me long to fall in love with her. Yet, when we were crazy kids in college, no real talk of spending our lives together, I had no idea the blessing I was receiving. All I knew was that this girl I was dating was a lot of fun, and I was always happier when I was with her, so I married her. You have no way of knowing the woman you marry, what kind of mother she would turn out to be. Teresa has surprised me in so many ways, and I am so thankful to have someone who is so strong in my life. This past year, with all that we have gone through, God has shown me that my wife is a rare treasure. She has juggled numerous doctor's appointments with spending quality time with Jamie; she has spent twelve days in a hospital room (no small feat) taking care of Clare; she has managed a difficult medication schedule, and still got Jamie to his playgroups on time. She has sacrificed so much of her personal time to make sure the kids are getting the attention they need. She has watched her precious baby lying in an ICU and fighting for her life, while comforting me and helping me to be strong. I am not sure if I am communicating how truly a special person Teresa is. I would be lost without her. So today, on Mother's Day, I thank God for my wife, who has exceeded all my expectations as a mother for my children. She is such a blessing to me, Jamie, and Clare. Happy Mother's Day, Teresa! I love you, and I thank you for all that you do for me and the kids!

Walk With Me

We are participating in the Easter Seals Walk With Me on June 8, 2006.

We did the walk last year as a family and were joined by a group of friends as well. At that time, Clare had just begun occupational therapy through Easter Seals. It is hard to believe it is already a year later! Look how far Clare has come in just one year! We had a great time walking last year and are looking forward to participating again. We were just starting out last year - now we know what a difference Easter Seals makes in the lives of so many people, young and old. We are blessed to have the services of Easter Seals and the support of all their generous donors.

If you are interested in sponsoring Clare and our family for the walk, you can click on the link on the right side or go to www.wwm.easterseals.com Once on the site, Sponsor A Walker and search for Teresa Rouillard. There you will find our walk page.

Thanks for all your support!

Mother's Day

I have been thinking a lot about Mother's Day. Suggestions on how to celebrate your mother and spend Mother's Day are everywhere. My favorite blogs and magazines have all had ideas, tips, readers' comments, etc. When Shawn asked me what I wanted for Mother's Day, the first thing that came to mind was exactly the first thing on the majority of moms' lists on everything I read - time to myself. The words popped out of my mouth before I could stop them. But then I thought, is that really what I want for Mother's Day?

Mother's Day IS a day to pamper mom. And, after this year, I could use some pampering! (ha ha) But Mother's Day is also about celebrating the mother and her role in the family. After all, I would not even be a mother without Shawn, Jamie, and Clare. Why should the best gift be about being alone and away from these three people who make me a mother and who I love best in this world? I want us to be together and enjoy being a family and relish my role as mommy.

Do I want some time to myself? Absolutely. But not on Mother's Day. On Mother's Day, the best gift will be about being together and being a mother.

(So, Shawn, if you were considering that gift certificate for a spa pedicure - I still want it. I'll just go the next weekend.)

How Blessed We Are

I had a bad day a couple days ago. Some stuff going on with our extended family combined with Clare being extremely fussy and clingy (which is not a common occurrence) and Jamie being fresh and disobedient (which, unfortunately, is a common occurrence these days), added up to some bad moments. One of those days when you question the decisions you made in your life, are tired of dealing with one problem after another, and are so thankful when the kids go to bed.

After that long day, I settled down to catch up on my e-mails. I had an e-mail from someone who has been through (and is going through) so much with one of their children. To make a long story short, the challenges in my life seemed small comparatively. Now I do not believe in making comparisons about who has the tougher lot in life. It's not a competition. Our life is our life, and the obstacles we face are personal and daunting to us, whether big or small to the outside world. However, after catching up on this child's story, I thought, how blessed we are. How blessed I truly am. It really caught me up. I did have a tough day and it took a lot of strength, patience, and praying to get through it. Yet at the end of the day, my two children were safe, snug, and healthy in their beds. That's a blessing in itself. Maybe we'll have another tough day tomorrow. But the blessing is that we are going to have another day together tomorrow. Another day to play outside, take a walk, cuddle and read books, (have a few time-outs), and be together.