Tuesday, March 5, 2013

shameless

On Sunday, L fell during church and bumped his head.  I just got him in to the bathroom before the seizure started.  It's happened a million times, but for some reason I felt so alone, sitting on the concrete floor, holding him as he soaked my lap.

We haven't dealt with that many public ones, it's just still hard.

I am not ashamed of L's seizures.   I don't hide that he has them, or worry what anyone would think if they saw one. 

It's just that I don't want a bunch of people crowding around or trying to help.  The moment is stressful enough without having people shouting suggestions, or asking what is going on, or do we need an ambulance? Once he had one at a pool, and a crowd of kids gathered around laughing. So I try to take him away when I can.

But then, when it's over, I sometimes feel so burdened.  After a few minutes, he's alright again, but I feel so shaken.  And though I still don't want a crowd, I guess I do want a little support.  Someone to run to the car and get his change of clothes, or offer to keep an eye on M for a minute so I can pull myself together.  I'm too good at sneaking away.  I don't even think anyone noticed on Sunday. Our church is full of people who love us and would be happy to help.  It's just the sort of thing that is nice when you don't have to ask for it.

There's something else, too.  Today he hurt himself on the playground, and Whim, who was nearest to him, whisked him off to the bathroom as soon as it started to look like he was going to have one.  I know exactly what motivated him, but it was the first time I'd seen someone else do it, and it looked like he was trying to hide it.  What we do now sets the tone for how L will see his seizures in the future.  They are a part of him and I don't ever want him to think he should be afraid of having one in front of other people.




10 comments:

  1. I can't believe kids laughed at him.

    I'm so sorry Robin, that feeling of being alone is so awful.

    And while I agree with you that he shouldn't be afraid, maybe he will like that he can do it like you do-he can have some privacy to collect himself and change his clothes by himself. Because while he shouldn't be ashamed of it, he shouldn't have to display it either. At least not if he wants. Does that make sense?

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    1. Yes, true. He might want to be alone when he can for all those same reasons. I just don't want him to feel like he has to.

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  2. Oh, that's so tough. You obviously don't want him to feel that it's something shameful to be hidden away--and what you do does set the tone--, yet you want to afford him privacy. It's so hard to know exactly the way to handle it. You're totally walking a line.

    And I understand about not wanting people freaking out around you when a seizure happens because that's unhelpful and adds to anxiety/chaos, yet wanting and needing support (the helpful kind).

    I wish I had helpful words. It's hard.

    I do know this: The fact that you are smart and in tune with yourself and Lennon, noticing these things, and thinking about them makes me certain that you'll figure out the just right way for your family to approach this. Not everyone is insightful enough to even take note on what they are doing and how it affects their kids. (nor are they introspective enough to be in touch with their own feelings.) You are, though. It doesn't make it easy and it doesn't mean you won't make adjustments along the way, but I know you'll find the balance that will be right for Lennon. --Lisa

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    1. I can't say enough about how nice it is to have a place to reflect about things like this, and be supported by kind friends. Thank you.

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  3. Oh I just want to give you big hugs right now. I think you handle it all so well, but I know it must still be so hard. Burns me so much that those kids laughed. I'm so sorry...

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    1. I know... actually, kids are kids and I get that. They don't know any better until they are taught. In that moment, I just couldn't be the one to step up and teach them not to laugh. You've only got so much focus, and in those times you just give it all to your kids.

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  4. Who brings up their kids to laugh at another who is clearly having a seizure? That is appalling!
    No matter how many times I read about this, my heart breaks every time :(
    I'm so sorry, Robin.

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    1. Thank you, Xae. I know it was just kids being how kids are... they probably didn't know what seizures are or what was happening.

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