Thursday, October 14, 2010

the anniversary of "that" day and other surreal moments

this picture was taken almost exactly one year ago.

it's coming up. the anniversary of "that" day. the diagnosis day. this time last year i had pretty much convinced myself that Avery was going to test negative for Rett syndrome. anyone i talked to about it was convinced as well. she couldn't have it. no way. but on november 9th we got the call. she had tested positive. i've been trying not to think too much about it. it's amazing what your mind can do to protect the spirit.

had a little iep meeting today. we needed to change avery's eligibility code from "mental retardation/intellectual disability" to "orthopedic impairment". it's the correct code because no one can prove that she is in fact disabled intellectually-plus, this opens her up for more funding making it a lot easier to get equipment and other things for her sensory needs etc. which is great. in order to change it, they needed a copy of her genetic test results. so I sent one in. and there was a moment in the meeting that I picked that piece of paper up and looked at it. and it felt like i was looking at some other person's life. not mine. not Avery's-and I said "it's all still so weird" and her teacher said "what is?" and I said, "that Avery has Rett syndrome". i mean i still really cannot believe it. it was like an out of body experience sitting there in that room.

prior to the meeting i went and observed avery in her classroom setting. i didnt cry watching my little girl needing a special chair on the potty or needing full hand over hand assistance to complete her art project gluing a construction paper monster or while she sat in an ugly chair with a bib on and a special bowl to eat her applesauce. i didnt cry when it took her three tries to throw away a paper towel or when she had to communicate using cards with icons on them attached to a binder with velcro. i was so proud of her for doing all that. but so sad too. why does she have to work so hard? why are we sitting in this class? why isnt she in a typical preschool and having play dates and sleepovers and going to disney on ice? why is this our life?
it's surreal.

in the meeting, after i said it's still all so weird, i reminded her teacher that it hasnt even been a year. that it will be a year on 11.09.10. and she said "i imagine that must be a big day for you" and i said yes, it is. but, i added-im not sure how im going to feel that day because yes, everything changed -but really for the better. her diagnosis gave us a reason. we finally had a direction and a road to walk down. with lots of help along the way. so i smiled about that. im hoping to be smiling on the 9th too.


mj said...

october 30th for us. let's have a diagnosis day party. a party will me smile.

Colleen said...

Our d day is tomorrow, I am with Maren lets have a party. It is so surreal, but at least I picked up a few good friends along the way.

Erica said...

name the time and the place and Im there.
ditto on the good friends.

Unknown said...

It gets easier as each and every day goes by, at the same time it gets difficult, but during this time we grow. On this journey - it will be okay...

Every nite I say to her, "see you in the morning" and every morning i say, "I believe in you"...

Love you gals - J