A social worker then came in to check on me. I told her everything that had happened up to this point. I told her about all the other doctors, his everlasting congestion, hypotonia, and my hunch that it all meant he had SMA. She listened, took notes and gave me a hug. From the window in our room I saw her talk to the doctor and the nursing staff. She must have relayed my story because then doctor came into the room.
He said, “So you think this is SMA?”
I nodded.
“Well, it is. Most likely type 1, given his age.”
Tears started to stream down my face as I pressed my fist against my mouth. It wasn’t a surprise because I already knew, but the confirmation is what got me. I was holding on to that ounce of hope that I could be wrong, that it could be something else, something less dreadful. As my hope slipped away, the doctor told me that Thomas would be flown to Duke University Hospital for treatment.
My husband was on his way to bring me some food as I got this news. I called him and told him to hurry. When he arrived I was balling my eyes out in devastation, horror, sadness and every other emotion in the book. He saw me drop to his knees, as he pleaded with me to tell him what was going on. The words hardly escaped my mouth before we were both uncontrollably sobbing as we held each other tight. When our tear ducts were dry, I was able to fill him in a little more.
The nurse placed my son into my arms as we waited for the helicopter to arrive. He had lines and wires coming from all angles. He looked into my eyes as if he was saying thank you, thank you for finally finding a way to help him. He was trying to tell me for so long.
