Six year old Mr. Sensitive has Duchenne Muscular Dystrophy. This means as he grows the muscle cells in his body will be replaced with fat cells, and his muscles will lose the ability to function. Most boys with Duchenne Muscular Dystrophy lose the ability to walk by age 12. Medical advances such as steroid use and ventilation have extended life expectancy to a hopeful 30.
Right now is all we’re dealing with, with an eye to the future.
We are an active family, and recently moved to a small town surrounded by forests, lakes, and fields. In his six years Mr. Sensitive has camped and hiked in all seasons, played t-ball, fished, learned to ride a horse, joined summer camp adventures and travelled around the province.
We expect Mr. Sensitive will continue to be active, and just do things a little differently. Hubby and I are already talking about making an RV wheelchair accessible, and have been eyeing accessible trails in our area. We are not above buying land and doing things ourselves, sometime in the distant future.
But we’re talking about right now.
Right now we’re dealing with fatigue, reduced stamina and strength, and debilitating leg cramps. What does this look like? My two year old can climb and jump better than my six year old. Mr. Sensitive has been immobilised by leg cramps and muscle spasms so severe that ER doctors considered Botox injections to relieve the spasm. We follow a stretching regime and just got foot and ankle splints to help prevent leg cramps. We’re discussing purchasing a wheelchair for school and community outings.
But that’s only part of where we are, right now.
Right now Mr. Sensitive is in Beavers and school, and we’re busy with local events. Tree planting, hot dog dinners, visiting friends and family, trips to the library and farmer’s markets are what’s important. The ‘stuff’ of Duchenne Muscular Dystrophy – medication, braces, wheelchairs – is just that, stuff. We’re focusing on right now.
Right now Mr. Sensitive needs rest breaks in his day and also serious accommodations and modifications to physically demanding and group activities.
What does this look like?
Exploring a wetland at his own pace, even if I spend an hour staring at the same puddle while he checks out the diving beetles and tadpoles.
Driving to the field trip location of his day camp while all the other campers walk through town. We meet the group and he visits the police station or fire hall with them, then I pick him up.
Strong parent advocacy, clearly explaining to the folks in charge that running races or stairs are a bad idea. Activity leaders must understand Mr. Sensitive needs some serious accommodations and modifications to group activities. They need to understand that by the time he does the ‘warm up’ activities, he’s done, but the social part of group activities is what’s really important.
It might look like me ‘hovering’ around my six year old at a birthday party, closely watching for signs of fatigue and forcing him to sit down and take a break. Or it means that you might see me walking by, pushing a double stroller with a lanky six year old sitting in it while his two year old brother walks alongside.
And if you look carefully, you’ll see that smiling Mr. Sensitive is carrying the box of buttertarts we just bought at a farmer’s market.
Because that’s what we’re doing, right now.