Friday, November 30, 2012

Epilepsy Awareness Month

This post has been sitting in my drafts all month. Call it writer's block, call it heart block. I'm not sure why. I wanted to write this post, I really did. I wanted to write it in November because November is National Epilepsy Awareness Month. I've written about epilepsy before. Two years ago in November when Tommy was recently diagnosed. More recently in April when we were fundraising for Tommy's Team and so many of you graciously gave to us.

I wanted to write again, though, because this cause is important to us, because so many people do still reach out to me with questions about epilepsy and seizures and about area doctors. Instead I stared at this draft for a month and here it is, the last day of November and I don't know what to say.

I want to tell you that if you've come here because your child has seizures or because your child was just diagnosed with epilepsy, stay strong. There is hope. If you've had to see your child go through tests, it's painful. It's unfair. You wish you could take the tests for them, as you pray that the results are normal. Or that if they're abnormal, they at least give you answers. What a strange thing to pray for.

This may sometimes be the face of epilepsy, as the parents of epileptics see it.
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Brave. Making a tough guy face at the camera, with a head full of electrodes and bandages. You feel like he is braver than you because you couldn't imagine being so brave at three, let alone now.

This is also the face of epilepsy. A healthy, sweet boy. Introspective. Not smiling for the camera because he was D-O-N-E with the photo session at that point, but still letting his mama hold him close.
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He hasn't had a seizure for over a year now. I didn't think I'd ever be able to say that. I'm so happy, but I'm also so scared. I'm scared because he lived 15 months of his life without ever having a seizure and then one day, he just had one. Just like that. This is what epilepsy is. I know this. And so, I move forward with the realization that he could have one tomorrow. With each day that passes, I sometimes forget. I forget that he has epilepsy and then, I remember. When he's quiet in the next room a little too long. When he moves in a strange way. When he trips over nothing. Then my breath catches and I wonder if that's the moment that my heart is going to shatter.

Please don't get me wrong. I'm hopeful, I am. I am so hopeful. He's never had any abnormal test results. We have no indications that he won't outgrow this. I've just learned to be distrustful of this disease and it's hard to shake that, but I still carry this hope with me, in a tiny little corner of my heart.

I guess I didn't really teach you anything about epilepsy, except this: my little boy is so brave. Whether he has more seizures or never has another again, I will always treasure his bravery through this journey. I never imagined this as a parent. I never could've imagined this as a parent. It's not something that you sign up for or something that you ever worry about when you're pregnant or when you're holding your new baby in your arms, and trust me, I had plenty of worries, but here I am. Here we are. What I know is this... whatever happens, epilepsy hasn't beaten us yet--and it never will.

2nd photo credit goes to Donya

5 comments:

Stephanie Precourt said...

One Year! This is so wonderful. I am so glad. And I know it's forever a part of you, but the pain does lessen and the love does grow and you get stronger because you just do.

xoxo

Steph

the corbett kid. said...

our kids are our biggest teachers, we are their biggest cheerleaders.

and the journey continues, xoxo

The Many Thoughts of a Reader said...

(((((())))))

Kaycee said...

This made me all teary. And you are wrong, it did teach me something about epilepsy. And about the strength of your boy. And of you. And your family. And everyone who faces something like this. You know my heart goes out to you and I smile so big that its been a year (a year!). That's amazing and I hope hope hope it continues.

Crooked Eyebrow said...

One fabulous year.
love you the both of you.

xoxo