Friday, February 25, 2011

Take that, Syndrome!

My brain is mush. Really, I shouldn't be blogging in this state.

Sometimes, parenting a child with special needs doesn't feel that special. Sometimes it is just plain hard and really, really tiring.

To clarify, everything about Carter is wonderful. Everything about Noonan Syndrome, is not. You know the bad guy on The Incredibles? His name is Syndrome. Some days it kind of hurts my feelings that the bad guy's name is Syndrome, but today it makes sense to me.

What is bringing on all of this emotion? A week filled with Syndrome-related crudiness. On Monday, Carter got fitted for new SMOs (orthotics for his sweet little crooked little feet). For some reason, I am out of sorts the week of Carter getting new SMOs. Why, you say, it's no big deal compared to his heart problems and life threatening allergies! Well, guess what? It is a big deal. It is a big deal that it is hard for him to walk. It is a big deal that he watches his classmates jump off the slide at the park. It is a big deal that at age six he would prefer a stroller to walking any distance and he can't play on the soccer team and he cries because his legs hurt.

Today, Carter went to the eye doctor because his physical therapist noticed he has a lazy eye. I thought I'd be the proactive mom and get this checked out even though I was sure everything was fine. Well, guess what? It wasn't fine. He is legally blind (and worse in the non-lazy eye) and has no depth perception and needs surgery to correct the lazy eye and even that won't fix it because of the shape of his skull making his eyes not able to line up. Not so much what I was expecting to hear.

You might think "how did she not know he couldn't see?". One answer- kids are great at over-compensating so she wouldn't know. Another answer- she's been a little busy between the seizures, hearing aids, orthotics, pacemaker, endocrinology visits, immune system suppression issues, physical therapy, OT, PT, asthma, IEP meetings and allergy stuff.

If you know me at all, you know I am crazy in love with Carter (who isn't?). Most days I handle all the syndrome stuff in stride and there are weeks it hardly affects us. Most days I rise to the challenge of it all and even take pride in showing other people how truly great life is with a child with special needs in your life. But in the spirit of authenticity, I needed you to know that I have hard days, too.

And you know the amazing part? Carter is rarely down. And when he is, he is over it quickly. And when I see that smile, especially the one that comes after the storm, I know I can smile, too.

And you know what else? Carter is WAY more Dash than Syndrome.


  1. I can SO relate (thanks for your comment by the way!) The irony around Carter's newly discovered vision issues is that a friend of ours found out her son had significant vision problems last year b/c of JK screening - not legally blind but would've been had they not caught it. And there's no syndrome present. So if a 'normal' family, with 'normal' life problems doesn't notice, how can a family completely immersed in medical complications possibly pick it out of the host of other things going on? She asked herself the same question - How could we not see it?

    and I'd forgotten about the Incredibles guy. Think I must have watched it before I had a syndrome in the house. Knowing me, I'd be ROFLMAO if I saw it now. Wonder if Syndrome as a movie villain gives kids heart defects, growth problems and poor muscle development? Could make for an interesting movie plot. The super hero in said movie would have to be the mom...

  2. This is amazing Erika. He is amazing. You are amazing.

  3. Erika, I am so sad that your heart has had such a hard, sad week. What a gift Carter is. And I imagine he sees more accurately than any of us. We are praying for all of you and love you very much.

  4. Erika you and Casey are perfect for Carter, and the girls. God chose you to be there for them and he doesn't make mistakes. If you need anything you know I am here. Carter is so special, he showed me nothing but his sweet side every morning when I woke him up, he is a great kid.