I read about a 10-month old boy who recently died because of SMA.
I received an e-mail from another SMA family telling me that they just had their boy in the hospital for 9 days because of SMA.
I read a Facebook post from a mother screaming out to cyberspace for a cure for this disease so her child could live...she was in such pain because of SMA.
I am part of conversations with others trying to figure out the best way to care for my child because of SMA.
It saddens me to know that a disease such as this exists.
It hurts me deeply to see my beautiful little girl struggle so.
I sit with her at night, as she lay in her bed, holding her hand. Her fingers are moving as she gains comfort from our connection both physically and emotionally. I can see her eyes behind her bipap mask; they're gentle and kind. She watches me watch her...I can see the reflection in her eyes of the screen and lights from the various machines...no longer does the moon cast its light upon her...for the moonlight has been overtaken by the glow of the machinery.
The sounds in the room are sounds one hears in the hospital. The humming of a small motor, the pulsing of a ventilator, the swishing of water that seems to keep the machines alive.
The machines' lights flicker and put on a show that provide messages of life...they are mesmerizing.
She lay still. Unable to move herself. Our dog lay faithfully at her feet. I know she'll need us to move her later in the night. I know that after looking at her as I enter the room I will quickly check the lights, the numbers, and the sounds for the normalcy I was taught to look for.
It's up to us to make sure she is at her best all of the time...day and night.
It saddens me to know that so many people, so many parents, have lost their beautiful child to SMA.
Early in the diagnosis, a father of a teenager with SMA Type 2 told me that one of the best things he did for his boy was to tell him that, "Everything will be all right" each night...that boy is still alive. I've taken that to heart with Ella. I tell her the same thing, if not with my words then with my eyes.
If nothing else I can do my best to give her a sense of peace...SMA cannot take that away.
