Monday, August 1, 2011

Momma never said there'd be days like this

A nurse did though. Once in the early days after our final diagnosis.

I can't tell you which doctor or specialist office she was in. I just remember her saying,"My heart goes out to you. I too had children 12 years apart and my youngest has cerebral palsy. It's a whole different world. It's gonna hurt more often than not and your gonna have to smile right through it. It's gonna make you stronger than you ever knew you could be...and weaker than anyone will ever see. I feel for you dear."

Weird that I remember every word but not who she was or which office. I was in a total daze. The memories come and go.

Around the same time a mother in the Rett world also said....,"This is gonna suck. This will be the hardest thing you've ever done. Day after day. You are going to have to CHOOSE to be happy. There's no other way. There's no way you'll survive it and you have to be there for her. You will be her everything.'

That's a big no shit.

Most days I trudge through. Fighting for others. Raising money for a number of causes. Doing research,writing,data entry..advocating..always advocating.

I remember asking my friend Shay in the early days how she did it. How did she take care of Miss Lyss all day and all night long and still be everything for everyone,fund raise and advocate. She didn't hesitate,"I have to. For this to make sense to me. To keep me from curling up in a ball and wanting to die. I HAVE to."

Simple answer and exactly right. It's like I have no choice. There are days where I just want to take care of Abby and pretend we're just a little different. But there's nothing in me that can tell anyone no. Nothing in me that doesn't go above and beyond what I was asked to do.

Why? Cause I'm a fixer. Always have been. I used to be a workaholic. One of those employee of the month every month..Manager of the year types. I did my job and everyone else's too. Everyone knew if there was something they didn't have time to do, couldn't do or didn't know how to do it,I would find a way. Seriously. I can give references.

I can't fix this for me. I can't fix this for Abby. But I can be there for others. I can raise money for research and awareness in hopes that THAT will one day fix it. Any part of it. If that promised cure gave her anything. Her voice...words...her hands...her strength,,her breath.

I have been up for going on the 3rd day. I'm exhausted. So much to do. Don't know how sometimes anymore.

Off I go to smile right through it.

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