Tuesday, March 15, 2011

Sometimes, I forget my son isn’t normal

Malachi tries out the mad scientist look.
I'm sure he'll kill me later for sharing this.


Every once in a while, it will happen.

I don’t notice it when it happens, but I notice when it’s over.

The “it” I’m talking about is when I feel normal, when my unconscious expectations for the future and for my children slip into normalcy. I see Malachi’s smile, I watch Jaden chew on things and I feel happy and hopeful. I know that Malachi is disabled, but through the passage of time and the discovery of a large blogging community of parents of kids with disabilities, it’s become normal. 

Unfortunately, then my brain loops around and equates the normal feeling I have to thinking that Malachi will be normal, that his CP will somehow not manifest, that he will not struggle to accomplish things the rest of us take for granted.

I am jolted back to reality by the Fred Meyer bakery worker who gushes that her 5-month-old granddaughter is already sitting unassisted, or the cashier who teasingly warns me that they will be crawling all over each other soon.

My smile falters. I wonder if they notice. I fantasize about retorting that MY SON HAS A BRAIN INJURY, YOU BASTARDS, so that I can stab them back using the same knife they cut me with. But they look so pleased with their assumption that my life is normal that I can’t bear to shatter their expectations.

It isn’t and it never will be. It will be our type of normal, but it won’t be society’s normal.

In the brain disorder community, “normal” children are referred to as “neuro-typical.” I like the way this sounds. The “typical” part seems to imply a broader range of acceptable ways of being.

But at the same time, I don’t think that “normal” is a dirty word.

If I say I want my son to be “normal,” I say it for his sake, so he can walk without enormous struggle and do a million other things that the rest of us take for granted. And yes, I say it for my sake, that I don’t have to fight with his little body that tenses violently when he is upset, or spend hours (and thousands) on appointments and therapy sessions.

My mom is fond of saying that “‘normal’ is a setting on the washing machine.” That is, no person is normal.

In fact, since my son was diagnosed, I began to realize how normalized society has become. Just about every person I know has had to have orthodontic braces or glasses or other previously unavailable medical interventions in order to conform to society's normal. Much fewer are the number of people today permanently affected by degenerative diseases, such as polio, and risky scenarios, such as premature birth.

One would expect that this would make people less accepting of difference when they encounter it. But I have hope that through mainstreaming and a broadening exposure to people with disabilities — what with shows like “Little People, Big World” and blogs like this one — that most people will be able to see past Malachi's abnormalities. That, while aspects of him will be abnormal, people will still be able to relate to the aspects of him that are normal.

And in that way, he will be normally abnormal, just like the rest of us. 

8 comments:

  1. I love this blog! Another beautifully-written piece. Thanks, Shasta!

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  2. Thanks for the encouragement, Mary!

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  3. I loved this post and can so relate to it! Every time I am out with the boys someone stops me and says "Oh, you must be so busy chasing them around" and I just smile and nod secretly wishing that I was exhausted from chasing them around when the reality is that I don't get to chase them around - that is not my reality and some days I wish like crazy that is was. But most days I am content that I am exhausted from playing with them and getting to giggle with them all day!

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  4. Isn't it so frustrating to constantly rebuff the assumptions of others? I hope we can both one day find comfort in our own realm of normal.

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  5. Ooh, I get in those modes too. When we are at home, okay I know it's not *normal* for a two year old to be playing on her back because she can't sit up, but it's what happens and I don't think too much about it. But once we step outside the front door, it's like I can see her the way others do, and the things that are cute at home just scream "disability!" to strangers and it drives me nuts. I use a neck pillow to keep her head from drooping when she's in the stroller, and somebody said "oh, she's sleepy!" And I wanted to say "No you idiot, her neck muscles aren't strong enough to keep her head up!" But of course they didn't know and that would be rude of me! Plus it was nice to know that at least one person thought of a normal reason why she has that silly dog pillow around her neck.

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  6. Shasta, thank you for starting this blog. Not only is it lovely to read your impeccable prose but I also feel it is helping me (someone who plans on being a part of your family's life forever) learn and grow throughout your process of finding that "normal" that is now your present and future. Please continue to use this outlet to educate, vent and share. :)

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  7. Anonymous4:38 PM

    That was a great post for me to read after you just invited me to your blog. I feel so similar in my moments of "normal-normal" not "our-normal". I like our normal though. It works for us. And yes, the comments... and you're not going to say - no, he's not crawling/walking/talking/eating because then there's an explanation and the pity that comes with it. And almost no one means it in a bad way but it's the daily (multiple times a day) dealings with them actually reminding you that it's not the same kind of normal that they are implying. I look forward to seeing more of your blog.
    ~c

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  8. Love the hair!
    You must have so much on your plate right now. Being mom to a single "neuro-typical" is hard enough so I can't imagine! {{{hugs}}}

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