Sunday, May 20, 2007


Genes are a funny thing. It’s amazing to me that out of tens of thousands of genes, Clare is missing a handful and that is why she does not walk, has heart defects, and cries when you sing “Baa Baa Black Sheep” to her, to name a few.

There are days when I totally forget about Williams syndrome and just see Clare as Clare and we do what we do because it’s our life. Without really thinking about it, I catalog her daily medications in my mind and check them off as I dose them out. We go from playgroup to physical therapy without second thoughts, and my only concern is where to wedge a two-hour nap in. But then there are days when it’s not just second nature and everything in me screams against it. The days when Clare is overly frustrated that she cannot get the toy she wants because she cannot get to it. The days when I am bringing three kids to the doctor’s office and trying to keep them all happy while we wait forever for our 10-minute follow-up. The days when we hear that Clare’s heart is working too hard, and the doctors need to relieve some of that pressure or else. Those days have become fewer and farther between as Clare grows older, but they still come. And usually end up smacking me in the face because they are fewer and farther between and I don’t expect them to come creeping up on me (or charging down on me!). But somewhere, deep down inside, I really don’t know if I would change any of it. That is such a tough question. Because if I did, would Clare be who she is? Would she still have her ear-splitting grin? Would she lovingly touch our faces and babble to us, while doling out hugs and kisses? Would she charm the pants off everyone she meets? (In church last week, I was holding Clare, who was remarkably content. When I peeked over my shoulder, I discovered she was holding the hand of the middle-aged man in the pew behind us! Embarrassed, I whispered, “I’m sorry” and tried to disengage her hand. The man smiled and said, “Oh no, she is so sweet. It was a pleasure. She grabbed my hand and was content, so I didn’t let go.”) I don’t want to let all that go either just so Clare can be “normal.” In many ways, I want Clare to be special because she is such a blessing to us and others.

Genes are a funny thing. And we know that Clare is so much more than what Williams syndrome has given her. She has the same strawberry blond hair that her Auntie Chrissy has. She has a mix of Auntie Erin’s dark blue eyes and my and Grand Dad’s green-hazel eyes. She has her daddy’s curls. She has the look of my deceased grandmother. My mom stayed with us for a few days after Simon was born and, one night at dinner, Clare gave my mom such a look that my mom gasped and said, “For a minute, I saw Grandma Ruegg staring right at me.” She has an incredible personality - a sense of humor, goofy, clever, downright adorable. And I know she gets all that from me.

To us, this is the face of Williams syndrome. And we love her so much!

(Warning: the quality of the video is not the greatest since it was on VHS, so I then recorded watching my TV with the digital camera. Backwards way of doing things, but it worked!)


Anonymous said...

Teresa - You really made me cry this time! What a beautiful look at something that has been so devastating in your lives. I believe that Clare's life has a purpose, just like all of us, and she will lead the way! Grandma Ruegg would have adored her, and I know she is her (all of our) Gaurdian Angel. Keep up that positive attitude, it's contagious! Love to all of you, Aunt Joan

Nancy said...

Wow, what a great post.

Sometimes it's comforting to take note of the family traits that have nothing to do with WS -- but I also am amazed by the common thread sewn by WS in our children. Erik makes that SAME FACE, and since his features are similar, it's almost eerie. I find comfort in that, too. WS is tragic but at the same time, I consider all of you part of an extended family. How lucky is that?

We love you.

Nicole said...

Thanks Teresa!! I always love your perspective on things, and this post was no different. Our children all do have a similarity, but there is a whole lot more to each of them then that handful of missing genes!! Emerson looks so much like me as a one year old, but with a WS twist. I tease Brian that I'm not sure where he was in this whole process because Emerson looks like I conceived her with "William". I know, strange thing to say, but you know what I mean. I love Emerson for who she is and rarely dwell on the "what if's" anymore. Yeah, she is missing some important DNA parts, but she luckily has a whole lot more of them that made a beautiful, endearing little gir.

I'm so sorry Clare has to go to the Cath lab again. We will be praying for you and will be able to breathe a bit easier when she is safe at home in your loving arms.