Friday, November 12, 2010


I wonder what it feels like to try and try and not be able to move what you're trying so hard to move.  I wonder what it's like to not be able to shift yourself when you get sore from laying in a certain position.  I wonder what it's like to spend most of your life laying down.

Does she wonder why she can't put food in her mouth when she sees us eating?  She watches intently when we feed her; I wonder what it feels like to have food enter your stomach directly.  I know what the bipap and cough assist and suction feel like - but what does it feel like to sleep a whole night with a mask strapped to your head?

What's going through her head when I can see that she desperately wants to talk but instead we have to suction a throatful of secretions out of her?  I know I wouldn't want to open my mouth after that.

I know she feels loved.  I see her smile everyday, hear her quiet squeals of laughter when daddy spins her around, watch her wiggle in anticipation of her favorite parts in songs and stories.  I know she has the attitude of a toddler; she can go from calm to tantrum in less than a second if she doesn't IMMEDIATELY get her way (we're working on that!).

But what I don't know, is - what does SMA feel like?  As it is, I'll never be able to relate completely to her, never be able to say "When I was your age..." because nothing in my life could even begin to compare to what she goes through every day.  Even on her best days. 

Every once in awhile I think back to my childhood, my adolescence - school, summers, dates, dances and everything in between.  Little fragments and snippets of memories, compiled to comprise the essence of me.  Feelings, emotions, experiences.  I'm selfish; I don't just want Lucy to be able to breathe without a machine, or eat by mouth, or even walk (though I would take any of these things and be eternally grateful.)  I want her to have sleepovers with friends in a tent in the yard, go to football games to cheer for her school, be whisked off by a boy to the dance.  I want her to go on late night walks with her best friend, go to the movies with her boyfriend, go to the mall with her mom and shop for hours.  At Christmastime (aka the height of flu season.)  I know that theoretically any of these things are possible, even with SMA.  Remotely possible, but unlikely.

No one can take away my dreams for my child but me, and I refuse to do that to myself, or her.  I refuse to hope for anything less than the best for her, the best being what so many people are granted everyday without a miracle.  I will never stop hoping, dreaming and praying that someday I can say to Lucy "When I was your age..." and be able to follow that up with a statement that is even slightly comparable to what she is going through in her life.

You're not going to win, SMA.  You can kiss my ass.