Saturday, January 19, 2013

Life with seizures and a request

Unfortunately for L, part of living with seizures is loss of bladder control.  The seizures are draining on his little body, and sometimes painful for his little muscles, and scary to come out of, but he is so resilient.  None of those things get him down.  Just a few minutes after a seizure, he is back to his happy, smiley self again. What breaks his heart, though, time after time, is when he realizes he has wet himself.

It might seem like a 2-1/2 year old wouldn't care. But he's been potty-trained for well over a year*.  He's no more likely to have an accident than I am, so it takes him by surprise every time.  And since he is so young, it's harder for him, because he doesn't just know as a matter of course that people with seizures lose control of their bladders sometimes, the way an adult would.  We reassure him every time that he's had a seizure and it isn't his fault, but he just doesn't understand.

L's had a few seizures in public, but we've always been there.  I think, sometimes, about him having them at school one day.  Who will help him?  Kids can be accepting and amazing, sometimes, and maybe his class will be.  But it only takes one mean kid to start laughing at L for wetting himself to flip the balance.  I can't stand to think of him being the outcast because of something he can't control.

So, please tell me an inspiring story about how you knew a cool kid with epilepsy or how the prom king had seizures.  Something.  Anything about kids being better than I'm thinking they're going to be toward someone who is a little different. 


*I wish I could take credit for it, but I didn't do a thing.  He has that determination that comes from being a little brother.  He literally trained himself.

 P.S. He didn't have any seizures today.  Just thinking.

17 comments:

  1. There was a boy in my elementary (6th grade) that had like a really super super mild thing of Down Syndrome I think. One time he accidentally wet his pants and he walked with a limp and nobody ever made fun of him because my classmates were all really NICE.

    He was one of the most popular kids in class and had a great sense of humor. He gave our graduation speech and one time on the basketball team he made a 3 pointer from behind half court and our gymnasium went CRAZY. I even cried, I was so excited for him. He is now working as a writer for a popular TV show.

    Did that help?

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    1. Are you kidding? That is awesome. That is just the sort of story I wanted to hear. Thanks Tara.

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    2. I am NOT kidding!! It's totally true. He was like the most popular person in my class, everybody LOVES him.

      I'm so happy to help :) Lennon is adorable (so is Miles) and you are both great parents and he is so loved that he will do awesome!

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  2. That is heartbreaking, Robin. I don't have any prom king stories, but you're a great mom (in case no one told you that today).

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    1. Thanks Deb. We all need to hear that from time to time, huh? :)

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  3. Deb is right, Robin. You are doing everything you can. Couldn't possibly ask for more. I'm so sorry you feel this way, but with you as a mom, I think he's going to grow up to be pretty strong.

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    1. Thanks Xae. Lennon does have a lot of strengths - he's funny and generous and smart and so handsome. ;)
      I shouldn't assume that the kids won't see all those things.

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  4. Losing control of anything is so hard. I don't have a story for you, although from all of the lovely pictures of him on your blog, it's clear that seizures don't get him down for long!

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    1. Thanks for visiting, Rachel. I've been to your blog a few times- you're a good story teller. Thanks for the encouragement.

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  5. Oh, Robin. This breaks my heart. He is just the most adorable boy ever. I can tell you without hesitation: Any child that decides at 1 1/2 he wants to be potty trained and then just does that with his own spirit and intelligence and drive is going to take on the world with gusto and be just fine. (and he is so gorgeous he will be the prom king to boot)

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    1. Thank you, that comment really brightened my morning! He does have a lot of determination. I shouldn't sell him short. :)

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  6. I cannot imagine how you feel as a mama going through this so often...I only understand on a tiny level since Preston only had a few. I hope that every person your little guy comes in contact with is beyond understanding and supporting of this. He is such a cool kid, I can tell!! And I can tell what a good mama he has:) He will be amazing in school, I just know it!

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    1. Thank you, Amanda! He is a cool kid- he won't need help convincing anyone of that. :)

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  7. This shows how smart and mature he is already at such a young age! Resilient is definitely the word I thought of as I read this. And he is truly adorable!

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  8. I can tell you a great story about a girl named Edna who was in my cabin at overnight camp. She came from a tough family and we could tell she had a learning delay of some sort. The love my cabin mates embraced her with was amazing. We made Edna the star of our lip-syncing performance for the camp talent show and she got a standing ovation.

    Kids can be mean - but kids can be really awesome, too. :-)

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    1. Thanks. I need to keep hearing those good stories. :)

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