9 Years

How is it possible that is has been nine years since I received that life changing call? The one where the voice on the other end apologizes. I suppose she apologized because the test for Rett Syndrome was positive, or she apologized because five weeks earlier we sat in their office and heard “we are testing for every possible cause, and that Rett Syndrome would be the worst case scenario.” I guess maybe she was apologizing for the life changing blow she just handed me.

(By the way if you are new to this blog and want to read my suggestions on how a Rett Syndrome diagnosis SHOULD be given please check out THIS POST.)

Each year I wonder if this will be the year that this diagnosis day comes and goes without a thought, I hear from other moms with older girls that it happens. Unfortunately, this is not my year for that. Maybe it is because this past week that fell between her birthday and our diagnosis anniversary has been an awful, seizure filled week. Weeks like that sort of throw Rett Syndrome in your face.

Maybe it is because we went from this:


To this: IMG_3788

Yep. That will make any week rough and makes the 9 year anniversary sting a bit more than usual.

Maybe it is because this is a time that we should be counting down the days left in school and not the amount of seizures she has. Our worries should be about what outfit she wants to wear to fifth grade graduation and not whether or not this seizure med increase is going to kick in. (I ask you all to pray that this WILL all get sorted so that she can return to school to celebrate the end of fifth grade with all of her friends because if not that would just NOT  BE FAIR.)

So, typically when the 21st roles around it is one of those days that I allow myself to cry it out – with no judgement allowed from me (or anyone else) it is a day that if my positive attitude is not at its most positive I give myself a free pass. Today might look a little like the past eight May 21st’s and that’s ok. Right?

Maybe next year will be the year that this day passes without a thought……….

One Response

  1. charity May 21, 2016 at 4:29 pm | | Reply

    praying the med increase helps

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