Today I had a sad day visiting a classmate of Alexander’s at Children’s Hospital. He had a malignant brain tumor removed 6 days ago. His name is Cooper and he is 9. His mom is a friend of mine, who recently found out about Alexander having Duchenne, and graciously committed herself to helping us raise money and awareness for the cause and joined my committee meeting 2 weeks ago. 6 days after committing herself to helping Duchenne, her son was diagnosed with a life-threatening tumor. The irony. His chronic headaches were misdiagnosed as allergies and / or migraines. Not until he woke up on a Wednesday morning with a swollen eye, did they drive to the emergency room for a second time in a week, where doctors finally performed a necessary CT Scan. The tumor was found. When she told me the events that followed, I was thrown back into our own diagnosis of Duchenne. The experience was similar: You are sitting there one minute thinking that everything is “Ok” and then within 2 minutes of white lab coats shuffling into a room, the life you thought you were having is thrown upside down. It’s like driving North on the 405 for days and without warning, your car sharply turns left off the freeway. Hearing the words “Brain Tumor” or “Duchenne” coming out of a complete strangers mouths while in a clinical and cold room, is like a very bad and hazy nightmare. Your brain absorbs the first few pieces of information they are telling you, and then after that all you can see are the doctors mouths moving, and their faces expressionless. You fall into what feels like a black hole and all of it seems surreal. You look around the room for a place to escape, because you are sure that your “new life” that these strangers are explaining to you, is not something that you are equipped to handle. You start frantically thinking of ways this could have happened. You blame yourself and try to come up with things that happened during pregnancy that could have caused this (the diet coke I drank??). You then tune out what these evil lab coats are telling you and start talking to God, begging him to make it stop. You think of ways that you may be able to simply disappear. (No – I didn’t want to actually kill myself – I wanted to disappear). You come back to earth, get up from your chair, muddle some words to the doctors, look into the bloodshot eyes of your husband and somehow make it home. Your new life has begun without permission.
The difference between Duchenne and a brain tumor is that with Duchenne you have months to absorb, grieve, be angry, research, discuss, internalize, pray and try to make a plan. With a brain tumor, you go from worried about a child’s headache and 24 hours later your son is in brain surgery having a malignant tumor removed. There is no time to stop and think. The absorption comes after the surgery. The recovery is long, but the end result could be victory. Your milestones are, God-willing, in the future. With Duchenne, the opposite is true. You enjoy what you can now, and based on the prognosis given, you fear the future.
As I sat in Cooper’s hospital room and watched him sleep, he looked like an Angel. I tried to hide my emotions for the sake of his parents but couldn’t help saying: “No child should be here going through this.” I think of him and Alexander and know that they will have a special bond someday. These boys were chosen, and goodness will come of their suffering. I know, God’s Angels are watching over them and we must keep the Faith. There is no other way. God has the final say.
