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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Wow what a night!

We had at least one tornado and possibly more touch down near us tonight.  Thankfully, neither was close to us.  The closest one was 2-3 miles away.  I’m truly grateful it was no closer – it destroyed a church, and damaged several nearby houses.    The thunderstorm that followed the hail and the tornado(s) was really severe.  All in all, it was a tense hour or two.

My mother and stepfather returned tonight from Duke University, where they saw a cancer specialist.  They performed a scan of some sort, then went in (non-surgically) to take a look at his tumor.  The news wasn’t good.  They cannot operate on him.  That doesn’t leave many options.  He will go back to his oncologist sometime soon and see what he says, but Dad already said he won’t have more chemo (of course, Mom said that was before he knew they couldn’t operate).  We shall see, but I think his time is limited.