Being Me…

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

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Part of being me…being an advocate

Well this is a new phase of my life!  I knew it was coming when I heard my daughter’s diagnosis.  I know that every parent should be an advocate for their child or children, but when your child has special needs, that becomes an absolute requirement.  The necessity arises from all different directions.  My daughter is only three and I’m already seeing the need for me to advocate for her in medical areas, in the school system, in day care arrangements and so forth.  This necessity to be strong, be vocal, be firm and be assertive – well, I’ve got the strong part down pat…its the rest that will be a challenge for me.

I love my daughter dearly and I will do everything in my power to see that she gets what she needs, deserves, and has a right to – regardless of the hurdles in my path.  And the same goes for her brother, although he seems to be vocal enough for the both of us! 😀

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Wow every time I think I get it together, some new wind comes a long and blows me over

My daughter, 3, had to be rushed to the ER at the children’s hospital yesterday from school.  She had a five-minute seizure followed imediately by a much shorter one.  That’s dangerous – the neurologist told us to call 911 anytime her seizures were five minutes +.  This is the first time we’ve had to do but, but unfortunately, I think this is what our life is going to be now.

She has Lennox-Gastaut Syndrome and seizures with this syndrome are notoriously hard to control, I’m told.  It is a rare, severe form of epilepsy.  I’m just beginning to wrap my mind about the diagnosis – and now we have a trip to the ER.  Sigh.  And this morning, we are no further along than we were last night.  Aaargh.

I am just numb right now.  I thought I was doing better, pulling myself together … but now, I am just numb.  I just want to sleep – even though I got a good night’s sleep last night (funny what exhaustion will do).  I’m going to try to talk to my friends today because I am really having a hard time.

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Welcome to the school system – and the backstep…

Ok…I learned something today.  If the school system offers assistance once, TAKE THEM UP ON IT.  They won’t offer it a second time…sigh.  Especially when the assistant principal changes once a year.  No continuity, apparently…sigh.

Well, the new assistant principal says she will see what she can do about getting my daughter using the school buses but…she can’t guarantee anything.  Even tho they offered to provide the wheelchair that THEY insist she use last year.  Mind you, the only time she needs a wheel chair is to get on and off THEIR bus – not in day to day life.  Aaargh.

Well, you live and you learn.  Its amazing how much can change in just a matter of months.  Here’s hoping they do help us.