Friday, May 25, 2012...
I will never forget that date as long as I live. We received a phone call from Chop on Wednesday afternoon asking us to come in on Friday morning at 8am. They said a specific neurologist that was there only once a month wanted to take a look at Treston's case and they had the lab result. For the next day and a half we prayed and thought of nothing else.
First, the physical therapist came in and evaluated him. He said he looks great, right on target save for his head lag. We thought that was good news. Then, the genetic counselor came in. She said we have an answer...muscular dystrophy. I felt faint. I felt like it wasn't quite real. I didn't know what to feel. They said they aren't sure what kind it is yet. They have narrowed it down to three...congenital, emery-dreifuss or limb-girdle. They won't know what type it is until they know when the onset of it is. They originally thought that his hypotonia was the onset, which would mean congenital, but when they saw how he has improved, they weren't sure. They tested Jon and me to see if we have it because if we do, then he would turn out ok like us, but they said they don't expect us to have it so that's pretty much a long shot. They told us they have to monitor his heart, because he is at risk for heart complications, so we made a cardiologist appointment for June 5. They said we have to watch for contractures, joint stiffness. The physical therapist said his hips feel a little tight and to let his regular physical therapists know so they can give us some excercises to work on with him.
We had all the kids with us that day and I actually think it helped keep me together that day. I think it finally hit me that night. I have this huge knot inside me now. I always wondered how parents handled getting news like this about their children. I just could never imagine. I still can't. I don't know how to look at my baby boy while he's looking up at me with those trusting, big, blue eyes and know that I can't help him. As a mother, you just always want to make everything better for your kids. You want them to feel no pain, ever. I don't know how this is going to look over the years, but I do know deep down that God has a plan. As hard as this is, I know God has a reason for allowing this. Just like I have to focus on his physical care, I feel like I need to focus on his spiritual care even more in the coming years. I want him to grow up to know God and to trust God no matter what his life is like.