Holding Our Breath

When Tommy first started having seizures a year and a half ago, we ended up meeting with the on-call pediatric neurologist at our local hospital. After breezing into the room and introducing herself, then talking briefly to Shane (I was with Tommy while he was having an EEG done), she announced that he wasn't having seizures. My heart soared and I hopefully said, "Oh?" thinking she was going to say he just had some sort of temporary sickness and we'd never have to go through that again. Instead, she said, "Yes! He's having temper tantrums and holding his breath." Just like that, my heart fell and the protective mother in me took over. I explained that while Luke did take away a toy from him shortly before one seizure, during the most recent one, he'd been walking toward me smiling and then he just fell and began seizing. I was angry. Hurt. Insulted. I couldn't believe that this complete stranger would think that I didn't KNOW what a temper tantrum looked like, that I'd somehow mistake that for a seizure.

Suffice to say, we made up our mind pretty quickly that Tommy would never be her patient. We left the hospital that night and the next morning, we took Tommy to University of Chicago. It was like night and day, comparing the two. Our appointment at University of Chicago lasted two hours. He'd already had all of the tests done at our local hospital, so none of this was testing. First we met with the resident, who went over a more comprehensive medial history than I've ever given. He examined Tommy. Then he took the test results from our hospital, his chartings, and conferenced with the pediatric neurologist. Then she came in and the first thing she said after introducing herself was, "Your son is definitely having seizures." I wanted to cry. Not because she said he was having seizures; I already knew this. Instead I wanted to cry because she LISTENED to us, because she took the time to care about my son and not just slap a blanket statement on him. I know that at a major hospital like U of C, she must see so many children who are far worse than Tommy, but she didn't blow us off and she understood that we are scared and looking for answers.

Sometimes with epilepsy, though, there are no answers. She couldn't tell us why he was having seizures or if and when he'd have another, but she gave us hope for a seizure-free future. These days, we're actually holding our breath (except for Tommy, who prefers to just yell at the top of his lungs), as he hasn't had a seizure since October. Since OCTOBER. We've never had such a long stretch. I don't know if this will be it. I'm afraid to even hope that this will be it, because epilepsy is such a tricky disease. There is still so much unknown about epilepsy.

This is why I'll be running for Tommy on May 12th. I'm choosing to run for the Greater Chicago Area Epilepsy Foundation for a few reasons. One, we don't have a very active local affiliate. Two, Tommy sees a doctor in Chicago, and I would like my money to go to research in that area. Three, I know a lot of awesome people in the greater Chicago area, some of whom are already signed up to walk or run for Team Tommy. How great is that?

Looking back on when Tommy first began having seizures, when I first opened up and blogged about it, I could not have gotten through that time without the support of this community. It was a scary, uncertain time for us, moreso than I could ever put into words. And so, as I was thinking about how I could bring more attention to epilepsy awareness, it hit me that I wanted to give back to the people who supported us, too.
With that said, I can't afford to give back to all of you; unfortunately, I did not have the winning PowerBall ticket, but I definitely want to give back to one of you.

With this post, I'm giving away a $30 gift card to one of these five awesome places: Starbucks, Sephora, iTunes, Amazon, or Dunkin' Donuts (winner's choice!). I thought to myself, Where would I like to spend someone else's $30 and these were the five that popped into my mind, so I hope you all think like I do.
What can you do to enter? Go to the epilepsy facts page and tell me something new you learned about epilepsy. That's it! Just learn something new and carry it with you.
For additional entries, you can do a few things. Join Team Tommy (Team Tommy will be walking on May 12th in Wheaton AND May 19th in Chicago and we will have t-shirts)! Don't live in the area? You can donate to support Team Tommy. Have you already joined or donated to Team Tommy? Awesome! You've already earned extra entries.
Finally, you can tweet or Facebook or blog about what we're doing. I would add up how many extra entries you can earn, but I don't teach Math.

Giveaway will close Monday, April 9th. Good luck--and THANK YOU from the bottom of our hearts.