An MDA Kind of Week

I received an email from a member of our Milwaukee area Muscular Dystrophy Association chapter last week, checking in on our family after our tumultuous 2019.  To say that a black cloud has followed us the last year is not high drama.  Even my most optimistic, glass is always half-full friend recently allowed that maybe my family was due to catch a break, and that is saying something because Nicole is exactly the ray of sunshine everyone needs in their life.  Anyway, the MDA was kind enough to wish us well while also checking in to remind me that the annual Muscle Walk team registration had opened.

Our family has participated in the annual fund raising event annually since my son’s 2015 diagnosis.  You’ve helped me raise over $10,000 to support kids and families affected by muscle disease, including the incredibly near and dear to my heart summer camps.  I’m still a bit stunned that I asked, because I HATED asking, and even more stunned and humbled that you answered.  Our walk team was consistently among the top five fund-raising teams in the Milwaukee area, a statistic I’m proud to notch.

COVID-19’s global takeover has changed everything we know about how we navigate our 2020 world, but even if not for pandemic, we wouldn’t be participating in this year’s walk.  I responded to her inquiry by circling back to the accident.  Honestly, every damn thing in my life since May 7 just relates back to May 7 anyway.  I told her that when my husband was injured and in the months after, we were incredibly fortunate to have had people from all corners of our world take care of us.  People fed us, cooked meals, and/or bought gift cards or groceries for us.  People sent us money to help bridge the gap so we could pay our bills.  I just didn’t feel the time was right for me to ask those very same people to support our fundraising for the MDA this year.  Our friends, family, and neighbors had done so much for us, and I felt that to ask any more this close to the accident was beyond my comfort zone.  It took a good three or four rereads of my email draft before I could summon the strength of my one little index finger to hit “send.”

And then I wanted to throw up because I felt I was letting them down.

Later that very day, I received another email from the national MDA organization containing the news that this year’s MDA camps had been canceled. Given the state of the world, news of its cancellation was not exactly “news.”  Many kids suffering muscle disease endure accompanying systemic health problems, compromised respiratory and immune systems surely among them.  Nobody’s going anywhere these days, least of all kids with multiple health needs and the crew of volunteer medical and counselor staff needed to support a camp such as what the MDA produces.

My son had elected not to attend camp this summer.  He is close to aging out of camp, and he barely acknowledges he’s got the disease (a topic for another day), but more directly had hopes of a summer job on top of his volunteer gig.  Actually it’s probably more closely aligned with his “Who, me?” stance on this progressive, ugly disease.  I’m not sad that he chose not to attend camp, but I understand well the disappointment and sadness many kids and families are expressing with camp having been shut down.  Camp touts itself as the kids’ “best week of the year,” and I know that to be true with my whole heart.


I’ve enrolled in a course–gotta do something productive these days!, and one of the required activities was to complete an assessment about your perception of your character.  More on this to come, but my number one character strength based on my responses was kindness–doing favors and good deeds for others; helping them; taking care of them.  I can’t say it’s wholly accurate, but I do know for sure what kindness looks like.  It’s not what I see when I look in the mirror, but in the reflection of the people I see around me.

Be safe.  Be patient.  Be kind.

And in a totally random non-sequitur, check out the colors in these downtown murals.  Since part of our “home schooling” has been a classroom behind the wheel of a car, I’ve been able to view the city from the passenger’s seat.  It’s terrifying and reassuring at once that my kid insists on driving through downtown and other densely peopled areas of the city as he logs practice hours.  He seeks the experience, and I see the city from a new, beautiful perspective.