Sunday, April 22, 2012

Tommy's Team

With each day that ticks by, I can't believe it's been so long since Tommy has had a seizure. Since early October. That's so many months, so many days. I could count them all, but I try not to because I don't want to let epilepsy be that much in charge.

We just took Luke to Kindergarten round-up. We had to fill out medical forms. Or rather, they gave us medical forms to fill out, but we had nothing to write. It made me realize that even if Tommy has no more seizures between now and Kindergarten, we're still going to have to write down that he has epilepsy because it doesn't just go away. Even if he outgrows it (and 2/3 of children do), he's still going to have a low seizure threshold and the likelihood of him having another is higher than it would be in a non-epileptic person. It's like the monster in the closet that goes away when you turn on the light. You swear it's there and you know it is, but you can't see it. That doesn't make it any less there.

The monster can't take away hope, though. And what I hope for is a seizure-free future. Did you know that epilepsy is historically one of the most under-researched diseases, even though it affects more people than multiple sclerosis, cerebal palsy, muscular dystrophy, and Parkinson's disease combined. Not so many decades ago, people with epilepsy weren't given a normal life. They were institutionalized. They were thought to be possessed by the devil. In some countries and cultures, they still are. It makes me wonder where we'd be if epilepsy research received more funding. If instead of putting epileptics in institutions, we sought to find a way to stop their seizures.

We live in a different world now, and I am so grateful. Still. STILL, there are so many misconceptions about epilepsy. When Tommy was diagnosed, we had family members question it. We had family members act embarrassed and appalled and some of these family members still don't believe or admit that he has epilepsy, they still insist that he must not be having seizures and it breaks my heart and makes me so angry. It makes me wish they could be by our side when he's had a seizure and see what it's like and see that it's not embarrassing or appalling but scary and that when they question us, they belittle what this little boy has lived through in his small life. We once thought he was going to die, and we were so glad when the diagnosis was epilepsy and not something else. Why can't they feel this way, too?

So as I hope and pray for this seizure-free future that may never happen, I also hope and pray for education and understanding. For an end to the stigma surrounding this disease. As you know, we're working hard to raise every little bit we can for epilepsy research by walking in the Greater Chicago area epilepsy walk. Thanks to the absolute generosity of so many of you, we've already raised over $2000! It never ceases to amaze me what we're doing. As we're running down the month of April, I want to remind anyone who was thinking of joining the team to please do so soon. I'm going to be turning in final counts for t-shirts soon and don't want to miss anyone. I can't wait to reveal the t-shirt design, because I'm pretty excited! And as always, if you could offer any monetary support, we would love that, too.

Most of all, thank you for reading and following and supporting us in our journey.


Kate said...

I'm so sorry that you're living with this monster in the closet. But you're OWNING it. And that's awesome, even though some family members can't (or won't).

Rock on, Erin.

Kristen said...

You, Tommy, Luke and Shane are awesome. . .just wanted to tell you. Can't wait to stand by your sides and walk in May. :-)

Bari said...

I can't remember if I donated yet or not, but I want to. Hit me up on Saturday if I haven't yet. I have students with epilepsy and it's so freaking scary. I wish I could be there to walk with you.

nicole said...

Why would someone make that up? Who would invent a seizure or a false cause for one? I'm sorry you have to deal with attitudes like that. Love that you're living with hope.

Stephanie Wilson she/her @babysteph said...

It's still such a sensitive subject for me, and I look back and think a lot of people just won't get it unless it happens to them. It's hard to explain or understand. But most of all I think people should consider the mother's heart. What we go through because of seizures, and the misunderstanding by others, and the lack of help or resources... it's not fair.