Even after all these years that evening holds a fairytale quality in my mind.
I made a spur of the moment decision - budget be damned, I would take my family to celebrate report cards with dinner in Georgetown. That's where you went for a special dinner, right? We ate paella by candlelight at an authentic Spanish restaurant. The waitstaff pulled out the stops, showering us with attention.
The night grew late and, surely, spells must break. It was time to go. Our car was across M Street and so Mary and Nicole, laughing, practically dragging Petey by the hands, dashed to cross the street.
I noticed a couple things all at once. There was no traffic. That was good. It was dark. And there was a scraggly looking man hanging out across the street. I focused my attention on him and so was not paying attention to what was happening with the children.
When Petey fell, he crashed down like a wall of cement. In the middle of the street. Boom. Fortunately, this being a fairytale, it ended well.
Over the last week or so there have been several posts on Facebook from parents about falls and their boys with Duchenne. Boys with Duchenne fall a lot. Parents, too, injure themselves lifting their child or trying to prevent a fall. The worst Petey had was a broken arm. With the contortions I've put my body through lifting him over the years, it is a testament to good fortune that my back is relatively healthy.
There is not a lot of peer reviewed information on falls and Duchenne. Nor is there much discussion about parental injury. Searching Pubmed on Duchenne and fractures, the closest subject to falls I could find, netted 36 hits.
One article by Doug Biggar's group at University of Toronto followed 39 boys with Duchenne and documented 9 long bone and 7 vertebral breaks.
The confluence of steroid use, low Vitamin D levels, weak muscles and muscle group imbalances (extensor muscles weaker, flexor muscles stronger) is a major cause of these falls and fractures.
And fear of falling doesn't end with scraped knees and broken bones. The muscle mass boys with Duchenne lose with casting and broken bones is not easily replaced. A broken leg can mean the end of walking. Then there is all the angst that goes with knowing all this and dealing with the aftermath.
There is trying to control the uncontrollable. Feelings of anger and shame. 'Why didn't I prevent it' or, from the child's perspective, 'Why didn't I try harder?' or 'Why am I so clumsy?'
How do you handle it, parents? Balance? Your feelings? His? Extra measures to make sure movement is safe? Are they enough? Those days of worrying about falls are behind me. I've graduated to other worries but the ever-present hypervigilance is still there.
I don't have the answers, other than to say we do handle it and the answers do come, even if it's one at a time.
That night two decades ago, Petey's fall didn't hurt him. The three of us managed to keep him from getting run over. But self-esteem and ego were on the chopping block: there was our audience, the scraggly man. It's always worse with an audience.
What a sight we must have been. Nicole, Mary and I made our way to the car, pushing, pulling, and dragging Petey.
I heard the man call out over the distance. "Why didn't I think of that? ... Fall down in the middle of the street and all sorts of beautiful women pick you up ..."
Petey laughed. We all laughed. And I looked upon my scraggly stranger with different eyes. Sometimes help comes from unexpected quarters.
Mayo AL, Craven BC, McAdam LC, Biggar MD. Bone health in boys with Duchenne Muscular Dystrophy on long-term daily deflazacort therapy. Neuromuscul Disord. 2012 Dec;22(12):1040-5. doi: 10.1016/j.nmd.2012.06.354. Epub 2012 Jul 21
