Letter to the newly diagnosed parent

I've often thought it would be helpful if there were some sort of "introductory letter" that parents would get along with the diagnosis. And since I haven't yet found one, I decided to write my own.

Dear Friend,

The news hits you like a ton of bricks, doesn’t it? You feel as if you’ve been punched in the stomach. The air is gone and you’re trying desperately to inhale again. Somehow, you’ve been given a ticket to an emotional roller coaster that won’t let you off, no matter how badly you want it to stop.

In a way, you’re going through a grieving process. You’re mourning the loss of the child you thought you had—the hopes and dreams you held for him, the unlimited potential he’s had since he was born. You may even be in denial that anything is “wrong” with your child. There’s probably some anger in there, as well (toward . . . someone? anyone!).

And you’re coming to grips with the child you now have. Suddenly, the future isn’t as clear as it once was. There are no guarantees or certainties any more. Although you’re not on the road you initially thought you were on, we can confidently say it’s not the end of the road. Instead, you’ve wandered onto (or been thrown onto) a detour from the path you were once skipping along so merrily on. Life will be different from what you expected even yesterday, but . . . (inhale deeply) . . . you can do this.

How do we know? We’ve been there. We’ve gotten the “genetic disorder,” “developmental delays,” “learning disabilities” diagnosis. The children we once viewed as perfect were also, at some point, diagnosed with Williams Syndrome. Our tears were as real as the ones pouring down your face. We, too, woke up in the middle of the night praying it was all just a bad dream, wondering if somehow the doctors had read the test results wrong and we weren’t really the parent of a “special needs” child, a child with life-threatening physical problems.

But then, as will happen with you, somehow, our pain began to subside ever so slowly. The tears began to dry up, and we began to come to grips with the diagnosis and what that meant for our families. As we did, you’ll research Williams Syndrome until you feel as if you could write a book on it (a good place to start is http://www.williams-syndrome.org/ ). And you’ll remember that the child now slapped with a “label” is still the child you’ve loved from the beginning.

You’ll want to get your child as much help now as possible. This could involve enrolling her in occupational therapy, speech therapy, or physical therapy (check with your local Head Start or First Steps programs for help). Or finding doctors in your area who are familiar with Williams Syndrome and can help treat or monitor the symptoms your child has. And you’ll want to get help for yourself in the form of support: you can visit the WS community on Facebook and check out the following blogs: williamssyndromefamilyhope.blogspot.com and williams-syndrome.blogspot.com.

Although it’s tempting to want to know now to what extent your child will be affected by WS (especially if you received the diagnosis early in his life), and although we’d love to tell you based on our experiences to what extent your child will be affected, we simply can’t. Just as each “normal” child is unique and develops according to her own schedule, your child is also one-of-a-kind and will travel her own path with your help and encouragement. We’ve learned to take each day as it comes and to do the best that we can in this moment.

Although you may feel as if you’re the only one going through this, we’re here to tell you you’re not alone. We’ve been there and are still there, walking together and offering encouragement and help when we can. The journey is different for every one but it’s a journey we’d be delighted to share with you and your family.