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Things they miss out on
Tue, 01/02/2007 - 21:42Topic: Living With Epilepsy - Youth
Hello,
I just discovered this site tonight. My son is 15 and has had epilepsy since he was 8. He is being evaluated for possible surgery in Augusta, GA, and will have his second video EEG January 20. He has had 4 seizures in the past 2 days, despite being on 2 grams of Keppra twice a day. I have been handling this okay today... until a few minutes ago.
For the past month, all he has talked about is trying out for baseball. His high school team won the state championship last year, and my younger son has played for 3 years. Cody has not been able to play little league because of his seizures and other situations that have occurred. But this year, he has been working out and getting ready for tryouts. A little while ago, he came to me and said he'd been thinking about baseball, and how it scares him to think of having a seizure while he is holding a bat. (He has complex partials, which can cause really bizarre "automatic" movements.") He said, "I could really hurt someone, and I don't want to do that." He said he thinks maybe he better not try out.
I can't do anything but cry now. I'm so tired of him missing things he wants to do. This year he has missed: 2 ski trips with the church youth group. A trip to Carowinds. Bowling. 8 days of school (just this semester). An overnight field trip with his history class.
No one wants to assume responsibility for him in case of a seizure and I totally get that. I am okay with that. But I just wish he could be a normal teenager and do what he wants to do.
Thank you for listening. How do you learn to deal with this constant loss of a normal life? It seems to me that it gets harder the older he gets.
Holly
Comments
Re: Re: Things they miss out on
Submitted by Holly Sox on Wed, 2007-01-03 - 19:53
Thank you, Spiz. I think one of the hardest things for me is that he's being so grown up about it all. He just accepts each loss and says, "It's okay. I understand."
We'll I understand, and it's not okay. But I'm so thankful that he has a positive attitude.
Right now he says he's going to talk to the baseball coach about being a manager or trainer or something. "Anything, just so I can be with the team."
I love him so much. And I know I can't protect him from the world.
Thanks again for listening and understanding.
Holly
Re: Re: Re: Things they miss out on
Submitted by spiz on Wed, 2007-01-03 - 21:09
Holly,
Whattaguy!!! To be so young yet so mature! He thought of the best alternative already.
In baseball ( I looove baseball!), they also have base coaches for little leaguers should he be interested in being a volunteer for the little guys. He needs to keep in mind that heat is a trigger so take steps in having access to cooling off.
Downloading the guide to first aid and having the coach or trainers read it may help soothe any nervousness they may have concerning his epilepsy being that most people have a way off base preconceived idea towards epilepsy.
Knowing the triggers for seizures helps too. If he isn't already, encourage him to write down anything he may notice that seems to trigger a seizure from food to something he may drink. Rootbeer causes me to have slight jerks - who would have thought? Noting these things now will help him later in knowing his limitations and in being able to build a lifestyle around those things more smoothly.
As a mother, I feel your pain and know your concern. And as far as wanting to protect him? That's where the phrase, 'Aw Mom!', came from! We wouldn't want to take that away from them, now would we? :) Smiles to you both!
-Spiz
Re: Things they miss out on
Submitted by spiz on Wed, 2007-01-03 - 00:16
Holly, I was 15 when my seizures set in and my world as I knew it changed big time. It was hard being that I was into all that was athletic and had a very competitive spirit. I remember how it felt, my heart goes out to him. The way my parents handled what was to me a major crisis was to try to replace each activity that was now considered not safe for me to do with a new hobby, interest or activity that was. I know this sounds out there considering he's wanting to do what his friends are doing, but by doing this, I met new friends who were involved in the new activities. I'm not going to imply that it was a simple switch, it wasn't. My heart wasn't into it alot of the times and I missed what I had at one time thought was a given. That was 33 years ago and being that I'm a female, maybe it was an easier transition but maybe he will be willing to give it a try. If I had to pinpoint the roughest times for me as a person with E, it would be my teen years. Once past that, looking for an alternative became an instant reflex, although not always with a smile on my face. Just keep doing what you're doing - sensing his pain but softly encouraging him forward. Welcome to the forum! -Spiz