Last night one of things I made sure I discuss during our meeting was to set expectations why I would wear masks whenever I sense someone is sick in the room. It seems like a trivial concern to most but not for families with kids who could easily start to get sick, or even worse (God forbid), just because of a mere common cold.
Our son Marcus is among these kids. Since we learned he has Duchenne Muscular Dystrophy (DMD) we have been more careful. I myself turned germophobic (I can see my sister clapping, proud) just for this reason. Our house is never without alcohol, disinfectant spray, wet wipes, and surgical masks–there was sort of panic when Taal erupted and the supplies of masks ran out for days.
People see me and my wife strong but every now and then we would talk silently, not wanting Marcus to hear, about our fears sentiments, and frustrations. Having someone with a rare and progressive disease is a challenge physically and mentally but it is a good thing to see that the awareness is spreading–thanks to support groups and social media.
While we wish the cure for DMD becomes available soon, the reality is it won’t happen in our lifetime. Right now we just have to face this head on and pray that as the condition worsens we get stronger and more prepared. Keep us families with members who have rare diseases in your prayers and we’d be better.
Okay, enough of the drama, Marcus wants to play Call of Duty.
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Mood: 4/10 Honks! (Hope Marcus gets well soon.)
Marcus Can Blog 