Being Me…

and discovering that that is quite the roller coaster ride. Wanna come along?


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Loneliness

I feel as if I am trapped between worlds, belonging in neither.  I have a special needs child.  My friends who don’t don’t include me any more, yet my daughter is mobile and relatively healthy despite her special needs.  I don’t feel as if I really fit in with other special needs parents.    I don’t know why I feel this way; it isn’t as if I have been asked to leave a group.  I just feel neither one nor the other.

The question is, I suppose, “Have I really accepted that she is special needs?”  I think that I have.  She is 10 years old, but more like 2 years old developmentally.  She has a rare, severe form of epilepsy so yes, her condition is life-threatening.  She is in special education and has been since she was 2 (well, it started as early intervention).

So why do I feel as if I don’t fit in with other special needs parents?  I don’t really know.  But I hate this feeling of being alone, of being isolated.  I guess in part I want my “friends” who have non-special needs kids to come back, to welcome me.  Typing that out, I have to say that I think I need better friends if they were so quick to abandon me.

At any rate, right now I feel alone and that I’m a misfit.  And that really stinks because I felt like that in high school and that was enough of that.  I didn’t think that would develop again as a parent.

lonely

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Keeping a child awake

Well, keeping a child awake is interesting.  Our 10-year-old was actually moaning by 11 pm.  She was still in a pretty good mood, but definitely liking lights out and ready for sleep.  By 11:30 she had had enough of me and pushed me off of her bed and pointed down the hall!  I gave up shortly thereafter and let her go to sleep.  I hate making her stay awake, making her uncomfortable.

Today was long.  I was tired, she was tired, my husband was tired…pretty much everyone but our son was tired.  She resisted getting up, running back to bed and pointing up to the light to indicate it should be turned off.  After three or four attempts, she finally gave up on going back to bed and started playing.

I found out after I got home that she screamed and cried through the EEG.  I hate that, I HATE it.  I know these things are necessary, and I know they didn’t hurt her, but wow… it is awful knowing your child had to go through such a miserable experience.  At any rate, the test is done; now we just have to wait to find out the results.  I don’t know that the neurologist is really expecting anything specific; S.  just hasn’t had an EEG in quite some time.  I guess we’ll find out.

I’m really looking forward to bed tonight.

Coffee can't fix this tired


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Update on seizures

Well, I cannot believe it has been 22 days since I posted about my daughter’s seizure.  I did talk to her neurologist, or rather her father did.  He thinks it was the problem getting her medicine from the pharmacy and that once she was back on it regularly, she wouldn’t have any more problems.  So far, so good.  22 days and no more seizures.  That was still scary – and somewhat discouraging, in that her seizures are controlled but definitely not going away.

Sigh.  Well, she was diagnosed with a form of epilepsy that she won’t grow out of so I suppose it really shouldn’t surprise me.  Still, you can’t help being disappointed.  I suppose that somewhere in the recesses of my mind there was a small, flickering hope that it would go away.  I know that’s not rational, but there you have it.  As a mother, I can’t help it.

At any rate, life is going back to normal.  We’ve all had a bad cold for over a week now.  That is getting really old, really fast.  If I could just curl up and sleep for a day or two, I’m sure I’d recover quicker, but of course that isn’t going to happen.  This weekend was restful, but of course there was still laundry, grocery shopping, etc. that had to be done.  Ah well.  It is what it is.  I’ll get better any way, but I would really LOVE to sleep.

Right now that is what I want for my upcoming birthday – sleep!

There’s not much else going on.  Due to the health issues, my daughter was out of school all week.  I don’t think she’s gone a full week to school this year, between being sick, holidays, and snow.  Sigh.  I hate that she’s missed so much school – and it makes getting her into a regular schedule difficult.  She did make it through the day today, which was wonderful – and she ate a good dinner, which made me happy.  (LOL, it is the little things that please me these days!)