Wednesday, April 7, 2010

A head full of lost dreams

Today was not the easiest day in the world for me. Soon after I sent Abby off to school for the first time in 5 days I came across some things that made me sick to my stomach. Makes me question life and God and why.

I was cleaning up..just a little straightening and dusting when I saw them. The 2 VHS videos of the first 2 years of Abby's life. I'm pretty sure the room started spinning for a minute. I don't know who brought them out or who left them on the tv but they made me sick to my stomach and made my heart ache. They usually sit on a shelf in a closet. Next to the Hi 8 tapes I never transferred over. I watched the tapes once about a year an a half after Abby's diagnosis. I don't know if I'll ever be able to watch them again.

How can I watch her crawl and repeat words at 5 months old when she can't do it at 5 years old? How can I watch her at 9 months old tackle her teenage brother to the floor,lift up his shirt and blow raspberries on his belly and look at us and laugh?

I know there are scenes where she clears off the bottom shelf of her changing table then piles all her stuffed babies on top of her then pokes her head out playing peek a boo. Or the time she chased an ice cube all around the room and then tore up newspaper ads for an hour. This from the child with the blank stare. The little girl who can no longer crawl much less pick up or hold a toy...or anything for that matter. She holds her mangled constant twisting fingers to her face all day..every day..until she sleeps.

The one scene that puts me into complete psychosis..she's wearing a red onsie with a flower in it. She has one of my plastic white cooking spoons and her purple bowl. She is stiing in the middle of her toys..stir..stir ..stir..,"soup mama" she looks up at me and says. Then she crawls to each of her babies and stirs then pretends to feed them. If I knew then that this was all going to end

4 months after my daughter was stolen from me in the night by the monster we call Rett Syndrome a complete reversal of symptoms was found in laboratory tests. Through medicinal and gene therapy there was a possibility we could get our girl back....or at least hear her her play with a much many possibilities.

That was 3 years ago last month. 3 years ago that they announced a possible cure. A cure that could lead to treatments for Rett Syndrome,Angelmans,Alzheimers,Parkinsons..

That put the Rett Community into action..on a war path for us parents. Let's get it done and get it done now!!

Not much has been done since. Oh I'm sure the powers that be are working their hind ends off. What we hear time and time again is that there is no funding or not enough funding or there needs to be more. I hear so many stories about so many families putting their hearts and souls into events to end up raising just a few dollars...From our end it seems like no one cares but us. I feel like I'm locked in this box..screaming my head off for my daughters life and for my heart and people just walk by and shrug and say..,"That's too bad."

I sit awake at night or when I'm home alone and wonder so many things. I get so frustrated I feel like there is no pill or any amount of therapy that is going to keep me from losing my mind. I cannot fathom why people don't care and don't give to research. I'm not standing on a corner with my hand out. I'm trying to save my child with everything I have....
Then I remember...Years ago..long before Abby was even thought of..Julia Roberts was all over the place blah blah blahing about some disease that kills little girls. She was on a mission to save a little girl and other girls like her. I remember not caring enough to ever even take a minute to hear what she was saying or why she was testifying before Congress...
That blah blah blahing was Rett Syndrome...the little girls name was Abigail and she died shortly before Julia testified. That kills me. It really does. I used to be one of the people who didn't care and didn't listen. Thinking of it now gives me chills from guilt.
When I think of the things people do support. That they do throw money out for without any knowledge...
A few years ago there was a couple who got their picture in the paper...They were holding up 5 little onsies and talking about their quints..People in this town sent them over a quarter of a million dollars. Seriously. Not only was none of that money tax deductible...THERE WERE NO BABIES!
So this is where my mind goes when I'm losing it. I often wonder if scientists discovered something that would fix hearts or diabetes or cancer if it would be held up and not funded while people died? If it would be left up to the families to fund almost entirely? Is it because Rett Syndrome is rare? ...A little girl is born with it every 5 hours. Is it because Rett Syndrome is on the Autism Spectrum and the people in charge still think that anything to do with Autism a behavioral disorder?
So I push on, doing the only thing I can do. Loving my girl every minute I have her and doing the Dress up 2 Cure Campaign in April for Autism Awareness Month. I worked my butt off last year just to get told no over and over. I worked for months and raised about $300.00 . October is our own awareness month...that we share with Down Syndrome and Breast Cancer. I send out emails and make phone calls and join campaigns.. for about 5 cents an hour. What I raise usually comes out of my pocket because I don't want the embarrassment of showing up empty handed. Those who do donate usually don't know us but saw a video of Abby online or is someone from high school. Every day in between I educate and inform and council those who need it.

Tomorrow will be better


Erica said...

wow. what a post. thank you. i feel the same way-although Avery never did do a lot that she should have, I still remember every day one little thing she used to say or do and doesnt any longer. Rett syndrome just sucks. and I cant for the life of me figure out why our girls have to be the ones. I just have to hope and dream that it will change for the better in the near future. I have to . big hugs to you all!

Kelly said...

WOW, what a powerful post, I wish I could reach through this computer and HUG you right now. I promise you I will continue to work my tail off raising money for OUR cure. I love ya!

Amanda Ellis, MT-BC said...

Hi there!

I must say I read your blog often, but have never posted a comment.
It sounds like you are having a hard day. I know it happens, but don't give up. You are the best thing for your daughter Abby.

When I read all the things you listed her being able to do before Retts, and what she can do now, I can hear that you're frustrated and discouraged with Retts and what it does to girls.

My only advice is for you to keep fighting and never, ever forget that Abby is still "in there". She can hear you and others around her and still has thoughts to herself. This disorder may control her ability to do many things, but I'm sure Abby knows and feels that you love her.

It is true that the research needs to be better funded and it will require thousands upon thousands of more dollars to keep it going. But it is also true, that we have to live life while we're waiting. That is truly the hardest part.

I hope today is better than yesterday. Keep going and concentrate on the positive. You are Abby's best advocate and mom!

Beulah Oelke said...

I had never seen this before...I sit here and cry and my heart breaks. I too have those movies, mine are on 8mm tape. We haven't looked at them in years. They will still be in the closet when I die, and whoever goes through my stuff can either keep or toss. My other kids have never seen them. Not sure they could ever understand and it would also break their hearts to know what their Big sister did before they knew her. Thank you for writing this...I am sure it describes many many Rett Mom's stories. Hugs and blessings