Autism, Down Syndrome, Despair, and Hope

Lately,  parenting has been a struggle, and I don’t know exactly why.

Or maybe, I DO know exactly why.

Today is the 3rd day of my girls’ school year, and I’ve been swept away by my own failure to keep up, by raw emotions as a new year starts, by my frustration that I’m not better at this, and by hope – which is something that my heart keeps telling me to keep at the end of a 10 foot pole.

Hope, that injection of eternal optimism that turns you from despair to “thing will be better!”  The real truth about hope, though, is that it can be a lie.

Things may not get better, no matter who’s elected, no matter how many supplements you give, no matter how you beat the crap out of yourself for failing at the diet, again and again and again.

Today I read, “The Atypical Child Learns to Fly.”  A painful article, if ever I’ve read one, and yet the thought, the idea, the pain that is at the back of my  head every day, every week, as I raise my kids, wondering if they will ever go beyond, if a career or college or marriage or even just meaningful relationships and conversations is in the cards for them.  Am I merely SUCH a friggin’ failure at biomed, or is that just a STUPID pipe dream, and I need to suck up and accept reality?

I don’t know.

I do know that twice the school has called, sending shivers down my spine, but all for nothing.  I do know Amelia has forgotten her sight words again, because we didn’t keep up and that’s what floobin’ Down syndrome does to your brain.  I do know that Zoe’s aide was upbeat, optimistic, and thrilled while casually telling me she threw a chair her first (“to be expected”) and how proud they are that she remembered all her schoolwork from last year.

And that last sentence pretty much sums up the roller coaster that is my life, underscored by the guilt and shame I’m COVERED in because I know my kids are fairly high functioning and the what the F right do I have to feel bad?

Then I saw this:

And the actress does a marvelous job, because I saw in those clips Zoe, only if she were 10 years older, and I thought, “Oh God, what if she is like this in 10 years?”

I can’t tell you much more than this, except the only only thing getting me through is my faith.  My husband may mock me, and people may accuse me of not being a “real Christian,” whatever that means, but when the pain jogs down and takes up residence in my bones, in my soul, where it is now, God is the only place where I can find real comfort, unconditional love, and complete acceptance.  I don’t even care if He’s not real, I need Him.

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