The more I read about LGS, the more I realize that Michaela could be here a real long time. I initially was under the impression that life-span for these kids was not much longer than the 20s. But yesterday I heard about a 29yo and a 67yo with this syndrome. 67 years! How crazy is that!
I was reading a blog this morning (indecisivegirl.blogspot.com June 28, '05), and the mom made this really cool correllation. Her son has LGS, and she was talking about how kids with LGS have an EEG where their brain activity looks like a bunch of spikes and then slow waves. This is the typical LGS pattern, and when they see it, they know what your kid's got. Well, when you have a child with a severe epileptic syndrome, life is very much like a series of acutely intense times, followed by a period of relative calm normalcy ( if you can consider life with a handicapped child "normal"). It's like a spike, and then a slow wave. I thought that was such an interesting way to look at it. Here's a link for a picture of this EEG pattern: http://www.mcg.edu/som/clerkships/Neurology/lecturenotes/Disorders.PDF
Go to page 8.....that's where you'll see it....
You know, I need to be concerned for my other kids. As much as Chris and I are dealing with this right now, they must be dealing with it too--even if it is on another level. For the most part, I feel as though they're doing fairly well. I've explained Michaela's situation to them plenty of times (in kidspeak, of course), and they seem to cope with her idiosyncrisies and troubles as best as you could expect from 2-6 yr olds. But yet, there's a part of me that wonders if they won't be suffering mentally by their weird situation in life. By the fact that I'm gone with her a lot. Or that I have to allow her to do some things that I won't allow them. Or that they always have to watch out for their big sister. Maybe it's all just normal to them, since they don't really know any different. At least, they don't now. What about when they're older and their friends don't have handicapped siblings that they have to treat differently? Are they going to resent her or us for how we've handled these various life situations? I don't know that I've thought of it before now......
2 comments:
Hi there - I think that was actually my site that you saw that on. My son Ethan has LGS.
I know what you mean about your other children. We only have the two boys now, but we want to have more children. One big reason for wanting more is so that our youngest son doesn't have to bear the burden of being the "normal" child alone. As he gets older, we want him to have other siblings to lean on.
I think our kids will be okay. I know some adults who grew up with special needs siblings, and they are fiercely protective of them. My husband thinks it will actually make our kids more sensitive to other children who are different than they are. That wouldn't be so bad.
You know - danny's family grew up with 3 mentally handicapped family members and I honestly think he's the better for it. He's more sensitive and compassionate. Your kids will know to be grateful and not to be selfish and not to judge people. I know you probably know this but I just wanted to remind you!
your cuz ~Elizabeth
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