Answers?

I don't want to write this.

In fact, even as I type, I still don't know if I'll put it out there. Deep down I know I'll probably click "Post," but for now, this needs to feel like a place to say whatever is brewing inside my head. It's a case of needing to get it out or else continuing to crumple up into a useless ball of nothing. I've been steadily shrinking into myself since yesterday, and that's gotta stop.

So here goes.

We got results yesterday from all the testing and screening and evaluating at the Sparks Clinic. And I was prepared to hear how much Stephen was lagging in speech (as I mentioned from the preview we got a few weeks ago). I was prepared to hear that his fine motor skills were poor. I was even ready to hear how "cognitively impaired" my son is...what I was NOT prepared to hear was that the opinion and general consensus of the team was that Stephen falls into the category of mental retardation. Severe. Severe mental retardation and autism... They even asked if we had had genetic testing done, specifically in regard to Fragile X, a genetic condition that can manifest itself in both autism and...the other thing. Why hasn't any doctor ever asked us this? Why didn't someone insist we have testing done? If this is truly an identifiable genetic condition, we could've saved money, sweat, tears, and stress in regard to all the DAN! bullshit.

The really weird thing here? A while back, David and I were discussing the need to have these evaluations done - how we hadn't had a definitive update on where Stephen falls on the spectrum, and David even mentioned that Stephen could have some MR (I can't even make myself type it out again). I bristled at the notion, and reacted quite mother-bearishly at the concept. I remember very clearly spitting out, "And what good would knowing THAT be?" And David calmly said, "Look...we need to know everything. The people who work with him need to know..."

Of course he was right. So, this isn't a new idea. Why did it shake us to the core of our being to hear someone say it? I suppose it would've been strange NOT to react in such a way. The more I think about it, the more I realize that part of the problem for me stems from the traditional "labels" - someone being RETARDED, you know...the kids in that OTHER building at school - even kids nowadays tossing out, "Oh, you're such a RETARD!" That's not my son. That's not Stephen. I sound so very PC, and I don't mean to...but right then, all those thoughts were coming at me like missiles. At that moment, I shed a tear or two, but the aftershocks grew worse throughout the evening. The idea that this could be genetic, and all the implications thereof...it's Fragile "X" - meaning, it would've come from ME. What would it mean for Kerry and for his future children? I was overwhelmed and sad and empty.

Stephen stayed up past 10, and I was absolutely pining for some solitude. I told David how desperately I needed to decompress...finally I went to our bedroom, put on headphones and listened to David Gilmour's last solo album, "On An Island" - beautiful, soaring, soulful music. I flipped through the lyrics booklet and slowly tried to relax. In the tiny pauses between songs, I could still hear Stephen in his room, fiddling with toys and talking to himself, and I would turn the volume up louder, determined to shut everything OUT and let the music fill my head, and the emptiness inside.

But it didn't. As I looked through the artwork in the CD booklet while listening to the music, I saw the images in a new light...ocean waves lapping against a small island, children playing in a creek as their laughter echoed across the water, a lovely couple walking hand-in-hand through the forest...and then, symphonic melody sinking into my soul while a heartrending, passionate guitarist coaxed pure, beautiful sounds from his instrument. I felt my own heart beating dully within my chest, echoing through the void. I wanted to be there, on that island, watching children play who have never heard of autism or cognitive impairment or mental retardation. I wanted to be that couple - in love and living fully in the little joys of life. I wanted that utter peace and simplicity...so much that I felt a physical ache.

Nothing we heard yesterday changes anything, not really. Stephen is still our child, our baby. Kerry still needs two strong parents. We need each other and the combined strength that comes only from a unified front. As one of the psychologists said, "After all, these are just numbers on a page. We can't accurately test kids with autism sometimes...you know your child better than anyone..." All true statements...We'll move on. Stephen will learn and grow. He'll make us laugh and he'll have us tearing out our hair. We'll continue to think pragmatically about the future, and hope that answers lie around the bend in the road. The path has wound around in a labyrinthine fashion up to now...lots of legwork resulting in very little forward progress. It has taken us through the darkness - momentary glimpses of light seem like only tricks of vision, at least at times.

This is a hard life. There's just no other way to put it. No matter how many times I'm told that things will work out, I will always carry these scars, as will we all. Being able to tell this story, one vignette at a time, helps. I will continue to write, to talk, to cry, to rail against the injustices I feel. It's the only way.