Waiting

Well I never pray
But tonight I'm on my knees, yeah
I need to hear some sounds that recognize the pain in me

-- "Bittersweet Symphony" The Verve

I wish I was having a better day, but I'm not. I am unable to offer any apologies in this regard, as it seems beyond my control. It is reassuring that I have fewer unbearable days as time goes on, but they sneak up on me from behind like dark waves. These days remain unbearable, although there are very few tears on my face anymore.

Today I found myself obsessing over my son's skin. I obsessed about how it is missing an essential component and how he will likely look old before his time. I obsessed on his arteries threatening to narrow and harden without warning because of this same missing building block most human beings have and take for granted. I can only protect him from the outside and hope for the best on the inside of his little body. I made a mental note to call his cardiologist about his upcoming echocardiogram. Perhaps that will chase the nightmares away again. The darkness of the unknown is killing me once again. Is it just me, or is there a hell of a lot of the unknown when it comes to this syndrome? I don't even know how long my child will live. It seems I have read everything there is available and now I wait for another scientific discovery or a breakthrough in therapeutic treatment. I simply wait.

I actually sat down to watch the 60 Minutes video all over again and scrutinized how the skin looked on Williams adults. Overall, it was reassuring, but I did find it difficult to tell how old they are with the combination of pixie-like faces and geriatric-appearing skin that seems stretched tight over bone in some cases.

Have you ever had a nightmare that you looked in the mirror and all of your teeth began falling out? If you haven't, it's a common nightmare many people share. My nightmares are instead of sagging skin, twisting DNA, and prematurely gray hair on and within my son, who seems like a little old man already to me sometimes. He shuffles along and stumbles when anxious or distracted, bending halfway over at the waist to get a better look at things at times. He watches typical children play in groups, standing close to other adults on the outside of the circle instead of joining in, shaking at unexpected noises but now grown up enough to remain silent in most cases. He cries fewer tears now, too.

My heartache, although I have become numb to it most days, will be present at some level daily for the rest of my lifetime.

I hate that.

I know I'm not alone, but I know there are many readers out there who are in the same boat as I am -- no other WS children in their small towns. No other local mothers of young children to meet and talk to over coffee. Ah, yes -- the rare, elusive WS child. They might as well be freaking unicorns here. As far as I know, we're IT in terms of a young child with WS. You see, I would know by now.

It's morbid, but I wait for my phone to ring at some fateful moment in time as the next WS baby is born and diagnosed here. I am planning on crying my heart out for that mother and hating myself the next moment for being deliriously happy to hear her voice. I have heard her voice in my dreams many times already. I will be tempted to say, "I have been expecting you."

It seems like decades since Sophie was here to visit Erik. It's now a matter of days before we are reunited again with families with similar stories and I will have one special day when I no longer feel like I have to blaze my own damned trail. I would like to walk side by side with someone for just one day down this rugged path. Someone who knows exactly how I feel. Someone I can touch and see for myself. Someone with a child whose face looks an awful lot like my own child's. Just for one day.

That day is coming in two weeks.