Let's Just Go Dutch

Recently, over at Darn Tootin, I put my two cents in on a discussion about the well-known "Holland" passage.

(Well. I should clarify. Well-known to me. And maybe a bunch of parents who have special needs children. And some other folks too. But not well known to Jete. If you asked him about the "Holland" passage, he'd probably think it was like the Panama canal or something.)

For Jete and any of you others who live under a rock, "Welcome to Holland" is an essay written by Emily Perl Kingsley explaining what it's like to have a child with a disability. If you've never read it, you can read it here. Even if you have read it, go read it again, just as a refresher. Go on. I'll wait.

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All set? Ok. Moving on...

Shortened, the discussion at DT was about the opinions and advice of outsiders and how people react to a parents' choice of words regarding their child. Namely, calling them "special" versus calling them "broken". Several of the comments got down to "anti-Holland" sentiment. I perceived some people as saying that "Holland" is a steaming pile of crap and anyone who believes in that sort of thing is a big, dumb stupid-head.

Or something less juvenile. (Cut me some slack. It's late and I'm still on a sugar high from trick-or-treating yesterday.)

This discussion hit me at a particularly bad time. I've been feeling unsure of my parenting skills lately, and I've been beating myself up for not doing Enough for Ethan. Whatever Enough is. While my gut tells me we're doing everything we can for him, I still have doubts. I think, "Someone else would do a better job at this." Whether or not it's true, it makes me extra sensitive to people judging me from the outside.

With my own doubts compounding, I got a bit defensive and put a comment out there, which, I'm sure, immediately alienated me from the cooler, better writers who read this site. Basically, I wanted to know where all the Holland hatin' was coming from. I was starting to feel like I was SUPPOSED to hate the passage, and just by finding something good in it, I became a Bad Parent. One of those parents who uses the TV to babysit their kids, and feeds them Chef Boyardee for dinner, and lets their daughter wear mini skirts in the third grade. Who doesn't fight to fix their kid's problems, but instead gives up and uses labels to patch what ails them. A parent who just doesn't give a damn. I wanted to point out that there some parents who can appreciate "Holland" and still fight for our children.

In return, a new friend commented on my site and pointed me to this article to explain why she doesn't like the Holland essay. My first thought was, "Wow. That Cornfield lady is a much better writer than I am." And I could totally relate to her opinions. It's an excellent article, and she defends her position well. It didn't change my opinion, but I could see where she was coming from.

My second thought was, "Wow. That Cornfield lady is a hell of a lot deeper than I am."

See, I'm no dummy. I'm pretty smart. Got a 5 on the AP Calculus test. But when it came to my literature courses, I did slightly less well. I never really excelled at that whole "ripping literature to shreds" bit. The part where you take a 3 line poem and write a 10 page paper analyzing every. detail. inside the author's mind at the time they wrote it. I was the girl who wanted to say, "That was a really good poem. I think it's about a bird, and how a bird can represent hope. The end."

My experiences with "Holland" were just about that deep. I read it for the first time and thought, "Huh. That's a pretty good analogy. I like that." (I'm guessing analogy is the wrong word. My resident English expert - E? What's the right word? Metaphor?) That was it. End of analysis.

From the Cornfield article and the comments at DT, I'm guessing a lot of parents had completely different reactions when they read it. It sounds like it is partly tainted by the delivery. Passed out by people with no experience in the matter who thought, "Look! Have some sunshine you depressed parents! Now cheer up!" I can see how that would irritate someone.

I honestly can't remember where I first read it. Maybe on someone's website, or maybe I caught it in a magazine. Or maybe an acquaintance, whose special needs brother recently passed away, gave me a copy. All I know is that it wasn't thrust on me in the midst of my grief to try to make me smile and suck it up.

Also, I thought of the audience when reading this. The essay is meant to be directed toward people who are NOT parents of special needs children. To give outsiders a small glimpse of what the inital few days/weeks/months do to a parent. To explain that we are not just dealing with the worries and fears for our child, but with the loss of everything we thought parenting would be like. Everything we had imagined for ourselves and our child; their birth, their homecoming, first smiles, first steps. It's a readjusting of expectations.

Obviously, this essay doesn't apply to all parents with children who have special needs. It isn't meant to be a One-Size-Fits-All t-shirt. But it also doesn't only apply to those who have severe needs, like Ethan. I would imagine the parent whose child has "only" a hearing impairment, or "only" a learning disability must go through a similar process of grief and adjustment.

I didn't write the essay, so I don't take it personally if you hate it. I just take it personally if you say I am an idiot for liking it. And I don't like it because I stroll through the tulips every day with a stupid grin plastered on my face. I don't want to come across as if I'm happy with Ethan's situation. Lord knows I'm not. I'm bitter as hell. I hate everything about this. I'm angry a lot of the time. But I've redirected my anger. I'm not angry at Ms. Kingsley, or doctors, or well-meaning but ignorant family members. I'm angry at the unknown, the "why" for which we'll never have answers. Mostly, I'm just sad. And I think quotes like this convey that pretty well:

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

And I think it's very true - if I wasted all of my energy being Angry, I'd be losing energy that could be spent enjoying Ethan. If I spent all my time Sad that he will never walk or talk, I'd miss out on his beautiful smiles and joyous laughter.

But I know I'm unique. I'm very lucky, as I've mentioned before. I have a wonderful partner, awesome friends, and a terrific extended family who help us out whenever they can. There are single parents out there whose children have far less needs that have a rougher time of it than I am. So I'm sure they'd have a lot to say to me about appreciating life in the face of so much adversity.

The thing is, I never read too deeply into the "Holland" essay. I didn't expect it to be the Ultimate Guide to Special Needs Parenting. It was a short, simple, metaphor. Obviously, there are flaws to the metaphor. You can't simplify something so complex, so painful, so monumental, in a few short sentences. But I think it was a good effort, and I got her point. I could relate. And really, isn't that what writing is all about? Relating to your audience?

My point is, I liked the Holland piece because of it's simplicity. It made sense to me. Because, even though I've rambled on for three dozen paragraphs, I like a clear and simple message.

Honest. I do.