Tuesday, September 11, 2007

For Jacqui

Jacqui of Terrible Palsy is taking a break from blogging. I can't blame her. I've been there recently, and will be again, I'm sure. Life is not the Internet, and the Internet is not Life. If you ever begin to doubt that, it's time to pull the plug. (On the computer, that is.)

Her reason for taking a break touches on feelings I've had as well. If you haven't read her latest post, please do. I started to write a comment there, but it quickly rambled on out of control. (Me? Ramble? NEVER.) Instead, I thought I'd post it here on my own spot. It's a topic that parents of special needs children - and most parents in general - can probably relate to.


There are many dark sides to parenting a special needs child, and not all are related to the medical world. A subtle judgemental undertow flows through conversations, stories and comments. There are always those who think they have the Answer to your Problem. They have some magic cure that a friend of a cousin of a neighbor's daughter used, and "Now she's just fine!"

These comments are annoying, but I've gotten used to them. When they come from a non-parent, or a parent with neurotypical children, I can smile and nod and ignore it a little. I know it's pure ignorance, not having walked a mile in my shoes (down a hospital corridor). They just don't know any better. But when the comments come from other parents of special needs kids, their words cut deeper. These are my peers. I am one of them. When they judge my actions, it hurts much more.

The hurt comes not from the source of the comments, but from within. They are touching on my darkest fears: that I am not doing enough for Ethan.

I will always wonder - if I had the courage, as some do, to research and travel and spend hours upon hours conducting ABR with Ethan, would his life become better? Or - if I'd only tried hippotherapy. Acupuncture. Chiropractics. Aquatherapy. Aromatherapy. Super strength vitamins. Any of a hundred new and amazing alternative treatments that someone out there swears by. There is so much out there we just never tried.

And all the "what if"s... If only we'd done his hip surgery sooner, maybe he wouldn't need to have it done again next year. If only we'd skipped his hip surgery altogether, maybe over time he would have improved with other therapies. If we hadn't had any other children, maybe we could have devoted more time to exploring therapies and fighting for his rights. If only we'd fought the school longer and harder to get him more therapy during the school day. If only we'd fought longer and harder to get the insurance to pay for outside private therapies. If only we'd sent him to an expensive private school that would have been better than our crappy public schools. If only we'd moved to another city or state where they have better public schools. If only I'd gotten one more second opinion with that special doctor a few hours away, or in the next state over, or across the country... maybe then, things would have been different.

My logical side knows that Ethan's CP is so severe that these decisions would change little in his long-term outcome. The differences, if any, would probably be imperceptible. But still, I'll never know that for sure. More imporantly, if Judy in Toledo and Gary in Detroit and Susan across the ocean spend 50 hours a week on special therapies and on plain old PT and OT and ST, and spend hours writing letters and making phone calls and calling specialists until they get the answers they were looking for, shouldn't I?

And if I don't, doesn't that mean that they must love their children more than I love mine?

And if I don't, doesn't that mean they are better parents than I am?

I feel badly when I hear comments from others about my parenting skills. But the truth is that Judy and Gary and Susan don't have to speak a word to me to make me feel like a terrible mother. I do it to myself every day. I guess deep down I know that I don't deserve it - that it's really, really hard to have a child with special needs - but still, it's no comfort. I want to have the foresight to know which therapies are going to work and which aren't worth the trouble; whether phone call number 17 will solve our problems, or if I should just stop at phone call number 9; whether to take the left fork in the road, or the right.

I'll never know what these therapies might have done for him, and whether they would have been worth the time and efforts. But I'm doing the best job I can. I know he's happy, most of the time. I know he's loved. I may second guess myself, and others may try, but I know the only judge that matters is Ethan.

Luckily, he's more forgiving than I am.


Kelly said...

I could've posted this.

Mel said...

I feel the same way about my efforts to parent my child with CP. Any criticism cuts deep and hard because I feel like I will never be able to do enough even though I am doing all I can... really. Great conculsion to a great post..."Luckily, he's more forgiving than I am".

Kathryn said...

Great Post Mete - so great that you are back - yes I am slow on the uptake on that one. I need to start doing rss feeds!

It's true though, on one hand you get people implying you haven't done they right thing by not taking your kid to Venus to the voodoo healer and on the other you get critisized for being in "denial" if you talk hopefully about future therapies or their healing.

So great that you are back. I have missed your voice.

anne at annenahm.com said...

It is hard to comment on a post like this because it is so strong it just makes the reader's heart do that achey-droppy thing for which there are sometimes no good words of translation. But I didn't want to stand silent either. Thank you for sharing this.

Mom Of Thomas said...

Wow, I could've written this post, maybe not as well, but the thoughts and feelings are the same. Thanks for a great post and letting me know that I am not alone in this journey.

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