Marie, 44, Sales Manager
My name is Marie. I’m 44 and my boys are Joe, 13 and Jack, 11.
What initially surprised me after the birth of my first? How much love I could have for this little being. I would flash-forward to all these points in his life and how I thought it was going to be. I pictured him at his high school graduation and all these things that we were going to do together. It certainly hasn’t turned out that way.
Two years later, I had his brother, Jack. He went into the NICU as soon as he was born. It was two years before we discovered what was wrong with him. They thought he had cerebral palsy. So we had all these various therapies. Then Joe, his older brother, started running funny and kept complaining of hip pains. Long story short, we went to all these doctors and they finally said, “let’s test him for muscular dystrophy.” They tested both and Joe, the older one who was doing well, was two times the normal level. One doctor looked at us and said, “you have major problems now.”
I was in shock. Joe was the boy who was going to take care of Jack. All of a sudden, things you think are important are not. The health of a child is the greatest gift you can ever be given...
...When we finally figured out what was going on, I had to sit my sons down and say, “this is what the disease is. We don’t know what’s going to happen, but these doctors are going to do their best.” My older one has pretty much signed on with these doctors. He’s said, “I’ll do whatever you need to keep healthy.” Whereas my younger one is extremely resentful and just tired of it all, tired of doctors. We take it year by year. I’ve been very open and honest with them. They’ve asked me if they could die, and I’ve said yes, but we could all die. But they can die from this disease...
