Thursday was a day of many letters:

  • A diagnosis:  LGMD–Limb-girdle muscular dystrophy, likely type 1A w/ as yet unspecified myopathy.
  • A registration: You actually complete and sign papers for your child to be a part of the MDA
  • A prescription:  We got an Rx for PT
  • A request for intermittent leave:  FMLA request from my employer so I can take my son to his various appointments without fear of job action against me for too many absences

Yesterday I received a telephone call from the lovely Kelsie from our local chapter of the Muscular Dystrophy Association.  She actually put words around a thought I have been kicking around in my head from Day 1, and it made me feel–know–I’m not the only one.  She called to acknowledge our family’s fundraising for the upcoming MDA Muscle Walk, and ask basically who we were.  The MDA, it seems, knows its clientele quite well, and she was wondering who the new kids on the block were.  I’d told her we just had officially been diagnosed and registered the day before as a matter of fact, so her timing was uncanny.  She told me a bit about what to expect on the day of the walk, including the fact that we would have the opportunity to meet other families.  On Day 1, I said to my husband before we even hit the parking garage that we were now one of those families. We are going to learn a whole new language and meet a cast of characters we don’t want to have to know.  Because I have a terrible potty mouth, I said in my pretend meeting other MD moms introduction conversation, “I’m sure you’re lovely, but I don’t want to have to fucking know you.”  Kelsie from MDA seems like a much more refined individual than I, so her version of that was less off-color, but she very nicely captured the essence of meeting similarly situated families thrown together by genetic mutation.

One of my tribe mates, who herself has navigated serious illness and owns a remarkable tale of recovery, said this of our diagnosis day:  “I’m not sure if you got good or bad news or just the proper name of your demon. I hope it puts you on the path to help him and rest of your family.”  #nailedit


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