Monday, September 10, 2012

Is it okay to hope a little?

Friday we saw Tommy's neurologist, for the first time since February. It was our longest stretch seeing her, because it is his longest seizure-free stretch. As the months tick by, I'm afraid to breathe these words in more than a whisper. Afraid to talk about it, much less type it. Even now, I'm so afraid. I am so afraid I'm going to jinx it, that our carefully placed house of cards is going to crumble once I hit submit this post.

I know this is silly, but October scares me. October will be one year since his last seizure. October will mark the two year anniversary of when his seizures first began. I kind of hate October. All the what ifs and the fears and the whys swirl around in my head. What makes him seize in October. What happens? What can I do to make it stop? Is he going to have another seizure? Please, God. No. I can't do this anymore. Sometimes we forget that he has epilepsy. Sometimes we've allowed ourselves to hope that he will never, ever have another seizure again and I just don't know what I will do. I know it's a possibility, but I just don't even like to think about it.

Anyway, we had a good appointment. There's so much that I want to share with you, but I can't just yet because my mama heart can't handle it all at once. It was positive. Hopeful. And I just have to hold on and make it through October, then I can share more about Tommy and what his future holds.

For now, I want to tell you how proud I am of this boy. He doesn't really like doctors and he gets nervous, but he sat so still while they took all of his vitals.
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Then we found out he needed a blood draw and he didn't even shed a tear. He whimpered a little when the needle went in, held my hand, then he just sat and watched. Better than most adults!
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He earned himself a Spiderman sticker and a cookie from Au Bon Pain for that. I am so proud of him. Next month, he will have to have another EEG. I hope and pray the results will be normal as they have always been. Epilepsy is exhausting, though, because there's no test that can tell us if he'll have another seizure, really. We just wait each day as we have been and pray that this boy goes to bed healthy.

17 comments:

Crooked Eyebrow said...

Sweet Tommy.
So happy for positive news and let this be another seizure free year.

Miss you all.

Courtney Fos said...

oh my goodness he is getting so big! I think its great you are hopeful but understand the scare october brings, I hope very much that you make it through the crazy month and continue on with seizure free months!

Lyndsay said...

Sweet brave boy! (and sweet brave momma). I'm happy for hopeful.

Julie said...

I can't believe what a little boy he looks like all the sudden...I still see him as a little baby!! I'm sending all my hope for a seizure free year and lifetime to you and that munchkin!

nicole said...

What a brave boy. I can't imagine living with that uncertainty. You seem to handle it with grace.

Sue said...

Sending good thoughts always

melissity said...

He is brave, and so are you. Praying you'll have a seizure-free year ahead.

quicklikeabunny said...

Well if you define hope as an emotional state which promotes the belief in a positive outcome... then I say yes!! Hope away :)

Bari said...

Nothing wrong with hope. Nothing at all. Prayers that Tommy stays seizure-free.

Stephanie Precourt said...

Yes yes Hope away! :) So glad, and hoping with you/for you.

Steph

keli [at] kidnapped by suburbia said...

Tommy is THE BEST!! I'm so proud of him, and I am praying for the best outcome!!

Elaine A. said...

I'm glad it was a good appointment and I hope and pray this October is not like that last two!!!

Katie said...

Here's to HOPE! You are one strong momma and he is an amazing, loved , brave boy.

*Lissa* said...

I hope that he stays seizure-free!

Jo said...

Two years since this all started? Holy cow. It must feel like a lifetime for you guys.

Here's to a healthy October!

Dahnya said...

Reading this broke my heart. You are very lucky to have such a brave little boy. No matter what October holds: it is obvious that he is extremely fortunate to have such a loving mom (hello? au bon pain cookies?!). Sending you guys nothing but happy thoughts! :)

Kaycee said...

I hope those appointments just keep getting farther and farther apart. I hope that October is fun and fall and happy and distractions from the worry that stalks you. He's a beautiful brave boy. Hoping for the seizure free streak to never end.