Right Now

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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.

For more on Duchenne Muscular Dystrophy please see the page on my blog or http://www.muscle.ca/

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About Angela

Super-powered, Special Ed teacher and special needs mama to FOUR (!) children with an assortment of special needs; including Duchenne Muscular Dystrophy and Prader Willi Syndrome. Our family features a heavy dose of good ol' ADHD). I blog about our halfpastnormal life.
This entry was posted in Duchenne Muscular Dystrophy and tagged , , , . Bookmark the permalink.

7 Responses to Right Now

  1. Trilby says:

    What is normal? When I met my husband in 1983 he was caring for a wonderful man that had both Duchenne and Facioscapulohumeral muscular dystrophy. We became a family. “Uncle” Dale saw me through two pregnancies and I became his home health aide while the kids were little.

    My youngest has a mild form of Prader-Willi syndrome. We did do a lot of redirection to distract him from food, but he managed to consume things like an entire cube of butter, bugs, birdseed, glitter, etc. The bugs were deemed nasty and spit in the toilet, thankfully. The butter he claimed was “good cheese” and that’s when we got a refrigerator lock. The birdseed came through mostly ‘intact.’ The glitter made the most amazing, sparkly, poopy diaper ever seen and was non-toxic to boot. I tried never to take my eyes off him, but he was adept at evasion.

    Dale lived to be nearly 38. He more than beat the odds. My son is in his 20’s now and works hard to control his food impulses, and stay active despite physical limits. The hole he had in his heart (VSD) closed up, his language disorder has been overcome, he finished two years of college (in five years) so far, and he’s working. His big sister also thrives.

    Our newest normal is the stroke my hubby just had – precipitated by a virus, no less. The visual field cut is the scariest part, recovery from that is rare, and effective treatment to reverse it is pretty much nonexistent. In some ways healthcare here in the US is still a dismal abyss. I hope we are on the road to rectify that as a country.

    Love, family, hard work, play, cherishing and celebrating each moment together – these are what is important to us … right now. That and lots of physical therapy, stimulating neural plasticity, and adjusting to this version of normal family life.

    Your writing is inspiring, and thought provoking. May all your halfpastnormal days have joy-filled moments and your advocacy for your little ones be richly rewarded.

  2. Wow…my hat’s off to you! We only have mild stuff compared to your challenges… I relate to always being at doctors and how exhausting that can be. We just “soldier on.” Our son has Type 1 diabetes (I call it living on the knife-edge of eternity), but as long as it is watched very closely and managed well, his life can look like “normal and healthy,” and our daughter has an unidentified digestive issue that we have been trying to diagnose and/or manage for 8+ years (now 18), and is on a second GI doc now that she is an “adult” and we could justify changing.

    I like your attitude, and your reading is a pleasure. I have a friend with 2 sons and a husband with different interesting issues and I think she would benefit from reading your blog. Getting her into the blogosphere could be dangerous, though, although it might reduce her FB posting!

    God bless in your new digs away from the big T. We might have even driven approximately up that direction one time when we visited Manatoulin Island. It is pretty up there north of Lake O, and probably less rainy.

    • Angela says:

      Thank you and we welcome visitors!

    • Trilby says:

      I agree that her attitude is great and reading her blog is a pleasure. Plus, she welcomes visitors! How cool is that? I hope you both have healthy and positive payoffs for all those doctor visits. We actually have a doctor appointment tomorrow and the roads just might even be plowed and sanded by then. =D

    • Trilby says:

      Oh, I forgot to mention I stopped by your blog and the post “Poetic Genie Out of the Bottle” was just wonderful, and it made me smile.

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