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.