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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Big Day for Our Girl

Our daughter had an appointment with her orthopedic doctor today.  She’s been seeing him since she was about three years old; she’s nine now.  That doesn’t sound like much until you figure in that she might see him 2-3 times a year when her feet were really growing or she needed new braces for some other reason.  So, basically, she has had ankle-foot orthotics (AFOs) since she was about 3-4.

At the end of the school year last year, I took her in because she needed new AFOs.  I can’t remember why now, but I think it was just that she was rough on them.  She likes to run and jump and move about and eventually that takes a toll on the ankle portion of the AFO.  Anyway, we went in and her doctor was so impressed with her progress that he said she could have the summer off, free of braces.  That is a wonderful thing – the braces would come up to just under her knees and being basically plastic, they do cause a  lot of sweating in warmer weather.  We were very happy.

So today we went back as a follow-up.  Her doctor had asked us to bring her in at the end of summer to she how she was doing; we got a little behind and managed to get an appointment today.  He said she looks great and she doesn’t need the AFOs anymore!  I am SO happy! So is she; she was always patient about putting the AFOs on and did fine wearing them, but you can see how much more she enjoys running and jumping now.