Today was the Center for Duchenne Muscular Dystrophy clinic day…
A completely dreaded day for us all. How exhausting both emotionally and physically. The first thing I must say is the fact that Alex did NOT want to leave the house this morning to go to the “clinic”. He absolutely had a meltdown about how long the clinic is and how we won’t get home till late. He cried and asked me why he has to go see these doctors, and why is it is such a long and tiring day. Why does he run “Funny”? He has never asked me this before and it shot a dagger through me. My beautiful son looked up at me with his big brown eyes, blood-shot from tears and told me that he “runs funny” and he doesn’t get to participate in many sports in P.E. It killed me. I could not, of course, cry in front of him – so I calmly pulled myself together and knew I had to give him more information. I told him that we go and see these “very smart” doctors and scientists to make him stronger and healthy. He takes pills everyday – because it helps his body and his muscles to be stronger. I am a very strong believer in the mind-body connection. If you believe that you are doing something that makes you stronger – than you WILL be stronger. You receive what you believe. When I finally got him into the car, we had a long drive to Westwood and a long talk. I had the opportunity to tell him that every body works different and every body has different needs. I cited every example I possibly could, of all the different ailments of people he knows. I discussed the kind of doctors they have to see and tests they have to take and treatment they need done. When he protests and asks why his sister doesn’t have to go to doctors, I just tell him that “every body is different” and at some time in our lives, we will be faced with something that requires tests, visits to doctors and medication. It is a normal part of life. I assured him that Doctors and medicine were created to make us healthy. He seemed satisfied with that answer….for now.
By the time we got to UCLA, completely late due to horrific Los Angeles traffic, I was wiped out. We began the day with a DEXA scan of his bones and then we did a chest and spinal x-ray. All I can think of is his friends that were probably enjoying recess at school while my son was at the hospital all day getting tests that no child should ever need. After that was the start of the “dreaded” Duchenne Clinic. Lovely doctors swiftly come to greet us: a Cardiologist, Geneticist, and a Neurologist sit and spend time with us, asking us many questions and giving Alexander a physical exam. We chit chat in between “shop talk” and I can’t help wishing we were just at a restaurant somewhere having drinks outside shooting the breeze then chatting about Duchenne. Then a second group of “Fellows” come in. Fellows are young doctors who look like they are in college at best – and are doing the last bit of extended medical training before their residencies. Did I get older? These people look too young to know what they are talking about! After the Fellows, comes the Physical Therapist, and then the Orthotist and have Alex do all kinds of walk tests and try on boots that perhaps he can wear under pants during the day to straighten his feet and provide stability.
I am secretly worried about how he is walking and have watched him fall about 4 times this week. I take a step back and find myself still, at moments of disbelief that this is our life. When I come back to reality, it is now our fourth hour at UCLA and Alexander does his last bit of complaining about how bad he wants to leave and how “bored” he is. We made it through one more clinic and I hugged and kissed Alex – telling him how proud I am of him and how he is the biggest and bravest boy I know.