Nightly routine- A glimpse at a portion of our day........

Each and every night I am harshly reminded of the effects of SMA. Throughout the day it isn't as bad because the light in Noah's eyes and joy in his smile, overpower the frailty of his body. At night, I carefully lay him in bed. I fill his feeding bag full and begin to hook him up. First, his g-tube. Second, his pulse ox. And last his BiPap, each giving a sharper jab than the one before. I pick him up and sit in the rocker, surrounded in darkness the room is illuminated by his pulse ox. Unable to see his face, the pit in my stomach grows bigger as SMA engulfs the room, no light in his eyes or smile on his face.....just a frail body in my arms. We rock until he becomes sleepy, as I stand up to lay him in bed I must take extra care in keeping cords from getting tangled. Slowly, I lay him in bed and sneak away. Each night is a reminder of the love I have for this boy and the sadness that overwhelms me for fear of the unknown...