If a tragedy happens and nobody cries, is it still a tragedy?

Lately, I find myself annoyed at how damned gracious and accepting of Malachi's disability people are being.

My close friends and family have totally taken it in stride. They shrug off his inability to cope with frequent loud applause at a graduation, while I fret about how it might mean he can never attend sporting events, rock concerts or fireworks displays. They smile with a "well, of course, we knew he could do it" attitude when I tell them with tremulous relief of his latest achievements. They love and accept and make fun of him just as much as they do with Jaden, while I watch for the slightest sign that he's being treated differently.

They are treating him as if he were born with the differences we all have that make our lives a little harder, like being bad at math or having brown skin or being butt-ugly.

Damn them.

I just want to scream: "Don't you get it?? This is a BIG DEAL!!"

But then I think: "You're being stupid, Shasta. Would you prefer it if they looked at Malachi with pity? Do you want them to treat you like a leper? If anything, you ought be more like them. If you didn't treat it as hard work to have a special needs kid, maybe it wouldn't be."

It's a nice thought — mind over matter and all that — but it's simply not true. Other new parents don't have to spend hours researching treatments, filling out zillions of applications, dealing with social workers, reading books and blogs, doing physical therapy, positioning him appropriately, spending extra time at feedings, massaging his tight muscles, etc., etc., etc.

And the worrying. Good grief, the worrying. All parents worry, but when your only mental defense — that such things are remarkably uncommon and the vast majority of babies turn out just fine — has been completely shattered, then there's not much left between you and the howling winds of uncertainty.

But then, if I just thought of CP as like having green eyes — a unique but judgement-neutral trait — most of that would float away, wouldn't it? All of that work and worry is focused on getting him the most functionality possible, i.e. to not be so different. When the "different" part is stripped away, what is left?

Would this no longer be a problem I have to fix? Could I just throw in the towel, not care if he never learns how to eat solid food or walk, because who cares? We have wheelchairs and blenders, so what's the big deal?

How much of my pain and my perception of Malachi's future pain is based on actual problems and how much is based on comparisons to other people's lives? In a hypothetical world void of judgement, would Malachi even be bothered by his deficiencies? Sure, all of us have wanted X-ray vision, but I don't think it's the defining disappointment of anybody's life.

But we don't live in that hypothetical world free from prejudice, and even if we did, Malachi's disability isn't like having green eyes. It's hard work, for him and for us. It dominates my daily existence. It clouds my mind and makes it difficult at times to think of anything else. It threatens his life with too-close-for-comfort complications like a startle response that could land him in traffic and the inability to swallow food correctly that could lead to aspiration pneumonia.

So, thank you, friends and family, for being so accepting of Malachi's cerebral palsy. It really means the world to me that I don't have to deal with prejudice on top of everything else.

But it is still cerebral palsy. It is a disability. It is not like having green eyes.

© Jessie Kirk Photography