A simple reminder for today

Sister's Medical Notebook

Sister is napping, Brother is playing in the next room, and I am fighting back tears as I sit here among proof that my sweet girl will lead a life so far from the one that we envisioned for her. Sister has her first Individualized Education Plan (IEP) meeting this Friday (prayers are welcomed that I make it through with out crying and/or sounding crazy). I'm updating her notebook with some therapy notes that I never filed and writing down some goals we would like to see them work on with her this year. I'm also coming up with some questions to ask since this is our first IEP and I want to be overly prepared. And just in case I am so overwhelmed that I may forget the name of one of her six doctors or birthday or something else I should obviously know with out looking up, I made myself a "duh" sheet. You are probably reading this thinking...wow, she is so organized (or OCD) but I assure you I am neither! This notebook is probably the only organized piece of my life. I live among boxes and piles of stuff that I would like to see organized...and one day I may actually cross that off my To Do List. Hopefully before they do a TLC show about me.

I've mentioned before that my sadness over Sister's diagnosis comes in waves and luckily does not last long. Today, I have Brother to thank for it's swift departure. He came in and asked what all this "mess" was. I tried to explain that I was writing goals for Sister to work on at school. Our conversation went a little like this...

Like a soccer goal? No, more like something we want Sister to be able to do on her own that she can't do already.

Like what? Like...sitting on the floor with out someone or something having to hold her up.

Oh...can I help? Sure, what would you like Sister to do with you?

Looking down at his latest robot creation, he asks if she can build robots with him. I explained it may be a long time before she can build robots like he does, but maybe we can put "playing a game with my brother" as one of her goals? He seemed to like that idea.

Five minutes later he comes back in the room. I wish [Sister] was grown up now, so you can be surprised. Surprised? Ya, you like big things. [Sister] walking would be a big thing, right? and then she could be in her walker chasing me....I love you! and he runs back to his robots in the other room. I love this kid so much!

Sounds so simple, and maybe it really is. Maybe, all I have to remember is that Sister WILL walk one day. Whether it be on her own or with the help of a walker, I truly believe that she will take those steps. She kinda already has. So why wouldn't I think this is possible. Not to mention, walking is just one goal on a long list of things I wish for her. And just like that, the sadness is gone, for now...back to reorganizing my mess and preparing for Friday.