Tuesday, April 19, 2011

Two girls on my mind

When P and I were impatiently waiting for our daughter to be born (she was a week late and had to be induced), I never allowed myself to think about the possibility that the baby could have health issues. Her birthmom took care of herself during the pregnancy, but sometimes it doesn't matter what you do - a genetic roll of the dice can deliver a blow to anyone.  Fortunately, A was born completely healthy. Her body and brain both worked as expected. Like most moms, I spent the first year freaking out over the specter of SIDS and fretting about each milestone, making sure she rolled over on schedule and all that jazz. We've had a few issues with her ears (she now has tubes) and some sort of recurring urinary tract dealio that we're still puzzling through, but by and large the kid is healthy. God knows her mouth works just fine.

When A was a baby, I met lots of other moms through a "birth club board" on Babycenter.com (and still stay in touch with many of them on Facebook).  We each have a child born in May of 2005.  When all of the babies were born, they developed at approximately the same rate. Over time, though, some of the moms have encountered some unique challenges. A few of the kids fall somewhere on the autism spectrum. Some have sensory issues. Some have developmental and physical delays. We're not as close as we used to be, but we try to support each other and not go overboard with the "look what my kid can do!" stuff.

I've been thinking about health and children and rolling dice a lot lately because I have a friend whose daughter has been diagnosed with Angelman Syndrome.  I know Lisa through a private adoption-related blog (we are friends on Facebook as well). I'd love to get together with her in person, as I'm convinced we'd get along famously, but she has the audacity to live in Florida. She and her husband have two children (via adoption) and one due to arrive shortly (they baked this one themselves).  They adopted their son first and added a daughter last year.

It didn't take long before Lisa became aware that her daughter Susan wasn't hitting any of the expected first-year milestones.  Lisa, who is a nurse, mostly took it all in stride. "She can't do this or that," she'd say, "But she sure is a happy baby!" Eventually, as Susan drifted farther off course, Lisa and her husband started pushing to have some tests done.  Obviously in most cases it's not a big deal if kids don't sit up on schedule and that sort of thing. I mean, my daughter was a late walker, but it was clear she had the tools to walk - she just didn't have the motivation, I guess. But in Suzi's case, it was all adding up to something far more concerning. 

Last week, they got the diagnosis: Angelman Syndrome. Angelman Syndrome got a little bit of press in recent years after Colin Farrell's son was diagnosed with the disorder. Other than that, I'm sure most of us have never heard of it.  I read the links that Lisa sent me so that I could learn more about her daughter's condition. I barely made it through the first paragraph before my heart broke for my friend. Angelman Syndrome isn't something that can be cured at this point, since we don't have a way to re-arrange someone's chromosomes, replace missing pieces, and so forth. There is therapy, of course. But the fact remains: Susan has a challenging life ahead of her. Her condition will limit her intellectual and physical development. She will probably walk but may never talk.  Oddly enough, perpetual happiness is one of the hallmarks of the syndrome.  Suzi is grinning ear to ear in every photo I've ever seen of her.

I have no doubt that Lisa and her husband will provide Susan with whatever she needs (throughout her life) and that they'd readily take a bullet for their daughter if they had to. However, I know they are heartbroken.  It doesn't matter how much you love your child - you can't help but be devastated by the knowledge that he/she will never go to college, get married, or sneak out with the family car after you're asleep. It's the loss of something very dear.

I honestly don't know how to reconcile feeling grateful that my child is mentally and physically sound (albeit a feeling I have always had - it's certainly not a new development) while knowing that a friend's child is not. I can't get Suzi's beautiful smile off my mind.

1 comment:

Susie said...

Oh Claudia! My heart hurts for your friend, too. What a blessing it is though that those with this syndrome are so happy--that is a gift in the tough days, I'm sure.

You're such a great friend to everyone, and I'm glad I have you in my life. :)