Mr. Sensitive has Duchenne Muscular Dystrophy.
My son has Duchenne Muscular Dystrophy.
There, I said it. I haven’t been able to say it. Really, I can’t speak the words. I can read about other folks who have DMD and join their conversations about night splints, muscle cramps, steroids and the many other issues we face. But I can’t say it.
Mr. Sensitive is 4 years old and has Duchenne Muscular Dystrophy. Duchenne Muscular Dystrophy (DMD) is x-linked recessive disease that causes muscle protein to eventually be replaced with fat molecules. DMD primarily affects boys. With time, Mr. Sensitive’s muscles will breakdown and not be repaired as would a typical person’s. His muscles will turn to fat and he will be unable to move them.
The progression of DMD is usually diagnosis around ages 3-6 (again, we were lucky to have an early diagnosis), the child gains strength until about age 8, then declines. The boy needs a wheelchair for fulltime mobility by age 12. What used to happen was these boys would die of respiratory and heart failure by their late teens. I visited a 17 year old who had DMD and was in the ICU with respiratory and cardio failure. Now treatment is more aggressive – young boys with DMD are prescribed steroids to help preserve their muscles for as long as possible, especially their heart. Boys with DMD can use ventilators and this can dramatically increase their lifespans. It is now possible to live to early 30s with luck and good medical care.
Mr. Sensitive is a bright, articulate 4 year old in our local kindergarten program. He knows that he has problems with his muscles and they sometimes hurt him. He does not know the trajectory of DMD. He is familiar with wheelchairs and is happy to use whatever tools are available when his legs don’t work. Mr. Sensitive is an active boy who loves to play with other kids. So his kindergarten class (with 27 other kids) is his heaven. He loves having a mob of kids to play with and I have proudly watched him learn the games of childhood – tag, hide and seek, chase, and playing cars. He knows he falls. A lot. His knees/arms/face are often scraped from hitting the pavement in the kindergarten play yard. He has heard me discussing DMD with the professionals in our life.
I manage to put on my professional mask when dealing with other professionals – teachers, principals, medical staff and the endless doctors we see. I can bluntly tell any ER nurse that Mr. Sensitive has DMD and therefore requires x,y,z. I can curtly tell teachers, special ed consultants and any educator that Mr.S has DMD and exactly what should go on his IEP, how his school day should be modified and any learning problems he has.
But, 14 months after my husband and I received his diagnosis we finally felt it was time to tell family and friends. And we couldn’t tell them. Not directly, I just wrote a fact-filled email, included some links (http://www.muscle.ca/ 🙂 and sent it out. But I could not tell them. I can’t imagine having that conversation, watching people cry once they understand his trajectory. I can’t deal with their emotion when I can’t deal with my own. I really can’t even say it.
If I can’t say Mr. Sensitive has DMD, how can I tell him?
Other articles about Duchenne Muscular Dystrophy in this blog include: