Sunday, December 23, 2012

I Love You So...

Lucy got a new book for Christmas from some very dear friends.  She can be a bit picky when it comes to new stories, but I read this to her a few afternoons ago, and she was fairly receptive.

The book talks about all the different situations that a child could be in, and the parents tells the child how they love them, no matter what the situation.  It came to one where the child says:

       "Even when I'm SICK... and I can't get out of bed?  Do you love me better HEALTHY than with 
        a fever in my head?"

I stopped at that point and told Lucy how much I love her, just exactly the way she is.  She started to fuss, which she sometimes does if I pause during a story when she wants me to keep reading.  I wasn't sure if that was the reason this time, so I asked her if she wanted me to keep reading.  She kept crying, so I asked her if it made her mad that she couldn't move.  She kept crying.  I asked her if it made her mad that she couldn't talk - and she stopped crying and looked at me.

It is beyond heartbreaking for me to not be able to understand Lucy.  We haven't found a particularly effective way to communicate.  But as hard as it is for me, I can't even imagine how frustrating it is for Lucy to not be understood.  I have tried to explain to her numerous times that we can work out a yes/no system - that if she would follow directions I give her, I would know she's understanding me and we could understand her better - but she is so stubborn.  I really feel like she just wants to be able to talk, talk like we do, not differently.  No matter what I do, no matter what alternative communication we work out, she can't yet talk like we do, and it breaks my heart to see her so frustrated.

This blog post isn't any earth-shattering revelation or funny anecdote.  It's just a mom, talking about how SMA affects her child.  I know that any parent hates to see their child struggle, especially when there is nothing they can do to rectify the situation.  SMA just kicks that helplessness up a notch. 

As you celebrate your Christmas with your family (and we are so blessed to do so with ours, at home!), please take a moment to add to your wish list a cure for SMA, so that some year, Lucy can tell me, in her own words, what she wants under the tree.

       "I CAN'T IMAGINE life before YOU came along... me there singing senseless, no meaning to             my song.  Call it MEANT TO BE, or simply blessed fate, you fill my heart WITH LOVE... and 
       for THAT I celebrate."