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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And summer begins

Well, things have been fairly quiet lately, which is surprising as the kids got out of school for the summer last Friday.  It looks like it will be a pretty quiet summer for the most part.  Alex and I will take one trip to Alabama to see my stepmother; I’m sure we’ll see some sights and do some swimming, as well as visit family.  That’s the big excitement this summer – no other trips likely.

Tomorrow, our dear Sophie has another EEG.  Sigh.  I know that it is a valuable test, but I hate this process.  She normally is asleep by 9 – I have to keep her awake until midnight.  Then we get to get her up at 5 am.  And she can’t eat anything for 12 hours prior to the EEG.  Fun, fun, fun – there’s nothing quite like a hungry, sleep-deprived child to really make the day fun and exciting.  Sigh.   Ah well.  It will be over before I know it, I know – and I know it could be worse.  LOL knowing that does not make this process better.

Sophie is going to summer camp this week and she LOVES it.  It is a camp for disabled children and adults, so she should be able to continue to go as long as we get applications in in a timely fashion.  They do arts, music, and other activities plus she gets to swim for a while at the end of the day, every day, so she really looks forward to this camp.  She goes three or four weeks every year.  Normally it is four, but I took too long getting my application in this year.

There is also summer school for Sophie.  This year, though, they shaved two weeks off of it.  I think someone, somewhere, missed the point of summer school for special needs children – at least some of the point.  One thing I liked about summer school was that it kept there from being a huge gap between one school year and the next.  Well, now there is going to be a big gap between school year, summer school, and school year.  In addition, she does better with a routine.  With a six-week summer school it was easier to keep her in a routine.  Well, there’s not much I can do about it; I am sure this is a result of budget issues within the school system.