Wednesday, July 26, 2006

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!

Friday, July 21, 2006

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.

Tuesday, July 18, 2006

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!!

Saturday, July 15, 2006

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!

Friday, July 14, 2006

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:

Tuesday, July 11, 2006

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!

Friday, July 07, 2006

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!)

Wednesday, July 05, 2006


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.

Tuesday, July 04, 2006


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!)