I'm struggling right now.
The reality of SMA has been fierce the past couple days. I don't know why, but my mind can't seem to escape the true awfulness of this disease.
Maybe it's because she's growing. The other day I was carrying her to the bathroom to brush her teeth and I was captured by the sight of the two of us together in the mirror. She's no longer a little baby. She'll be two years old in a little over two months. She should be walking, running, jumping and climbing.
But no. Instead, I'm carrying her, trying to cradle her in my arms like a newborn. But she's not a baby. And looking at ourselves in the mirror made me realize that when I hold her, it looks like something's wrong.
Maybe I can't escape the reality because she continues to struggle. So much.
She just keeps regressing! I thought her regression was supposed to plateau a long time ago and she CONTINUES to get worse!!
And she doesn't get it. She doesn't understand why her body won't work the way she wants it to. And she gets so frustrated from the simplest of tasks (like pulling her head up if it falls or trying to take a drink from a cup with a straw).
Last night when I was lying in bed, "that thought" entered my mind. The place in my mind that I RARELY let myself go to. Because it's so awful that no parent EVER wants to think such a thing.
But last night, it forced it's way in...
What if we lose her? What if this awful disease takes our baby girl's life?
What if Ella dies?
I hate Spinal Muscular Atrophy.
