December 02, 2009

My abnormal kid.

I never wanted a normal kid.  Even before I had kids I knew that I wanted my kids to be different.  To be their own persons.  To not care about what all the other kids do, but to know what they like and to do what's important to them.

I wanted to be able to celebrate all the ways that my children were unique from all those other kids out there.  I wanted to celebrate all the things that made them extra-special.

Then, one shocking morning, our normal kid, Jade, became a kid who wasn't normal anymore.  She started having so many seizures that she became very, very different from all the other kids.  She drooled.  She couldn't communicate well.  Her parents always hovered inches away.  She started wearing a padded helmet.

It wasn't the kind of "not normal" I wanted for my kid.  I began wishing and hoping and praying that my child could be normal again.

My child still isn't normal, but we're making progress.  With every step towards normalcy, I get to celebrate.

The other night, Fawn tried to compliment Jade.

"Jade, you're a super-star!"

"No! I'm a baby monkey!"

"Then you're a super-star baby money!"

"No! Not a super-star! I'm a baby monkey. You're Mama Monkey. Halia's a baby monkey and there's Papa Monkey."

This "monkey family" thing has been going on for almost a week now. She's even assigned imaginary tails of various colours for all of us. I had mine installed late this morning.

More and more, Jade is using her imagination. Normal for most almost-four-year-old kids, sure, but there once was a time - not so very long ago - that I worried she would never come out of seizure shell and be able to do normal kid things like play "pretend".

Since we've weaned her off the last of her medications, we've seen both her language skills and logic skills blossom.  She's catching up on her speech to where the normal kids are at, and she's tackling puzzles and other challenging activities.  We can go to the playground now and not have to hover two inches away.

But there's more. We went out for dinner at a friend's place the other night and I started asking Jade to do things - normal things - that I would normally expect her to just do.

"Jade, drink your bubble drink1."

"Jade, put your boots on."

"Jade, take your jacket off."

"Jade, it's time for bed."

The response to everything was NO! and when I'd repeat myself a little more sternly, the response became

What's the big deal, you ask?

My kid was being stubborn like a normal kid!  My kid was throwing a tantrum like a normal kid!  My kid was asserting herself like a normal kid!

On the outside, I was a stern, angry father.  On the inside, I was jumping for joy.

Jade still isn't a normal kid.  Even when we beat this epilepsy beast once-and-for-all (and we darned-well will), she still won't be a normal kid.  She never will be normal because she's gone through something that most people can never imagine and will never be able to understand - but she's gone through it with courage and determination and spirit and because of it, I've learned more from her than from anybody else in my entire life.

My kid is extra-special. 

And that's something I can celebrate.

1A phosphate vitamin drink that she needs to take because of the ketogenic diet that controls her seizures.


Tara Muise said...

hey...although i like the style of your blog, i have to take issue with this last post.

i developed epilepsy when i was 12 and now, 20 years later, i still have to take medication to control the seizures. however, the worst thing, by far, is not that loss in consciousness (in a usually embarrassing fashion) but the fact that i was/am treated differently - both positively and negatively.

don't do this to your daughter. please. treat her like a normal kid as much as you can. without that, she will never be a normal adult.

Meandering Michael said...

Hi Tara,

I think you may have misunderstood. We do treat Jade like a normal kid as much as we can. We don't pamper her or assume that she will never live up to her "full potential." Quite the opposite, we're doing everything we can to help her be as "normal" as possible. We have a determined, considerate, happy, curious kid (which, I guess, isn't all that normal these days...).

There are some things that we have no choice but to do differently, though. She's on the ketogenic diet to control her seizures. When we're out and there's food around (at a birthday party, for example), she can't have any of it. We need to watch her like a hawk to make sure she doesn't eat anything that isn't part of her special diet. That's not normal. There's nothing we can do about that right now, though. Kids ask why she can't eat food with them and we have to explain so they understand. The other kids know she's different and, right now, they need to know that she's different because if they didn't, it could compromise her health.

That won't always be the case and I'm looking forward to that day.

Meandering Michael said...

Oh! Nice to learn about another northern blogger! Thanks for sharing your comment.

Megan said...

Funny how the written word can be so easily misunderstood. I have epilepsy, and I thought this was a great post.