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We’re not in Holland, Toto.

Someone shared “That Holland piece” with my husband. http://www.our-kids.org/Archives/Holland.html on the extremely slim chance you haven’t seen it already.

It’s a button for me. Almost every parent I know who has a special needs child has had the piece shared with them at one point or another by some well-meaning person hoping to make them feel better and have a better attitude about some devastating diagnosis.

That piece drives me up a fucking wall. Shiny isn’t Holland. Shiny is more like Australia, where they have amazing vistas and tons of poisonous things that will try to kill you if they can. That piece was written about a child with Down Syndrome. If Shiny had Down Syndrome, life would have been a hell of a lot simpler these past few years.

I love her dearly, I do. I fight for her all the time. I find amazing joy in the simplest things with her. But she’s not Holland. And it’s not that simple.

That piece really minimizes what it is really like raising a child with a disability. It’s not just a slower pace with different scenery. It’s not just a changed expectation, and slowing down to smell the flowers won’t heal the soul-deep scars that her first years have left.

Every time I start to relax with Shiny in the moment, I end up getting hurt. Every time I start to relax in general, another child with her deletion dies or has a serious illness. It’s more like trying to avoid getting mugged in Tijuana than it is wandering the tulip fields in Holland.

With Down Syndrome, there are guidebooks. Maps. Support groups. Research. It’s a known quantity. With Shiny, we thought we were flying to Europe and were thrown out of the plane without a parachute to land on an unknown continent in a place where we didn’t speak the language, and we’ve been rubbing two sticks together to make fire ever since. We’re resourceful people, which means I’ve been working on writing the travel guide for the past 7 years, we’ve made friends with the locals, as it were, and through sheer stubbornness have managed to go from stone age to bronze age, as it were, in spite of, not because of the people who were supposed to guide us through, her doctors. But we didn’t get here by relaxing and enjoying it… if I’d just gone with the flow and “accepted” our lot, she’d still be crawling, if that, and she’d not be reading, certainly, and she might well have been a whole lot more medically complicated.

Maybe, now, we’ve gone native enough that we can take more joy in the day-to-day. I never needed Italy… but it would have been nice to have some decent hotels and a good restaurant or two and a whole lot less physical pain. And I’m not going to apologize for the very real grief that comes when you spend your child’s first two years not knowing if they’ll survive, and their first five years wondering if they’ll ever learn to walk.

Now that she’s walking and communicating, it’s a whole different country again… and if it had been Down Syndrome, we would have been here years ago.

Some parents take comfort from the piece. And that’s fine. If any special needs parent finds ANYTHING that helps them deal, I’m all for it. But it is one thing for it to be shown as a description of how it is for one parent dealing with their child’s Down Syndrome, and another thing when it is given as advice. As advice, it is more “assvice” than anything. “Buck up! It’s not so bad! What, do you hate tulips or something?”

During the hard times, getting something like that for the first time I’m more likely to growl, “Don’t fucking talk to me about Holland.” And during the easy times, I just don’t need it.

Pregnancy certainly is like a journey. And I’ll talk about that in another post. But this? This ain’t Holland.

Published in Shiny Special Needs

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