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Saturday, August 7, 2010

looks can be deceiving

Yep, looks can be deceiving. From the looks of this picture I have two totally typically developing kids. But, I dont.
Today was one of those days when I was constantly reminded of this fact. Lately it seems as though every day I am realizing for the first time that my daughter has an incurable devastating neurological disorder. I keep getting punched in the stomach, reliving a nightmare, having dreams shattered. I guess Im stuck between #2 (pain/guilt), #3 (anger/bargaining) and #4 (reflection/loneliness) stages of grief. Im super angry. I feel guilty for being angry. Im in pain-for Avery especially, it hurts to see her struggle so. Seeing her try to open a board book that she loves and she cant and she is four. And she could do it easily at two. Im bargaining-why me? why her? why us? why ANYONE? I hope for a time machine to go back and start over and never have Rett enter our lives. I am reliving memories of when she could do "fill in the blank" and feeling isolated because of it. Even though I know of too many families who have faced or are facing the same thing as we speak.
It just doesn't make any sense. This cannot be how my life is supposed to be-can it? I don't believe that she was "given to me because Im so special and would be the best parent for her". Im more science than spiritual and it was just one of those accidents. Did it happen for a reason?? I suppose there are all sorts of lessons and silver linings and blah blah blah. But at this moment all I want is my girl back. The girl I thought I had-the girl who is still in there-in a body that wont cooperate with her perfectly "normal" brain. I'd give ANYTHING. There I go bargaining again.
Well now that I have gotten all depressing, (which was never the intent of this blog! I wanted it to be inspirational and smart and witty-oh well) Ill share that I ventured to Target with both kids today. Avery held my hand the entire time (she usually wants to ride in the basket) and didn't scream once. We had a list and were on a mission so it was a pretty quick trip-plus I had fruit snacks to dole out. I was so proud of her-and told her so in the checkout line. She did such a great job. Tomorrow its off to soccer-Avery is on a VIP team (for kids with special needs), they are the Dolphins. And Im the team manager. We have our shin guards and team snacks ready to go... At least Nolan is excited. :)

2 comments:

joetremblay.com said...

Hugs to you, Erica. I hate the really tough days, when denial and acceptance take a vacation and leave guilt, anger and despair in charge.

Some days I find great comfort in the notion that we get our children for a reason, that we are the only people who can properly handle the challenges. (I mean really, some of the mamas I've met would SUCK at this!)

But then I see news reports about kids with delays and illnesses who are abused or neglected or growing up in filth, and I know -- that was just a crappy coincidence, and really all of this is.

You were dealt a really tough hand, and some days you will be acutely aware of it. But then acceptance circles around again and a lovely, perfect day arrives. I hope that day comes soon for you!

Jennifer said...

I love you and Red and am sending my energy to you. I cannot imagine how you feel...just thinking of you today. Your experience as a mom is very different than mine and I am so glad you have the support of the other parents who do get what you go through.
WE are in your corner. Much love.