Thank you! The Beard goes on...
September 05, 2017
I've had a beard in some form or another since I was in college (so, um, a few years now..) but as you may have noticed it has been growing lately. I mean really growing. Like I can tuck it in and use it as a scarf. I didn't really set a goal to have such a glorious face blanket, it just kinda grew on me. I guess it started back in October of 2014 when my son Will was in the ICU of Boston Children’s Hospital following an 11-hour long spinal surgery. One of the consequences of Will's Myotubular Myopathy (MTM) is that his muscles are too weak to keep his bones straight, so over the years he had developed pretty severe scoliosis (curvature of the spine). He wore a back brace for years, which slowed the progression, but even with that his spine ended up with a 90 degree bend. So this surgery straightened things out quite a bit with the help of lots of titanium rods and screws. And that's a pretty darn thought-provoking life event - to see your child going through something like that. He was out of the ICU and back home after 6 days, which I think set some kind of record for that kind of surgery. The kid is tough. His muscles might be so weak that he relies on a ventilator to breathe and a wheelchair to get around, but he is tough. Anyway, somewhere during that week, something inside me said "grow it out". Now that I look back, it really makes no sense. Perhaps it was the hospital-induced sleep deprivation, perhaps it was just thinking about life differently overall. But whatever it was, I embarked upon the shaggy road I am on to this very day.
By July 2015, at the time of the 4th MTM-CNM Family Conference, the old five-hundred-o'clock shadow was coming along nicely. As I enjoyed time with friends new and old, and was amazed by the incredible research updates, I was glad my beard could be there to experience this wonderful event with me. (Looking back at pictures from the previous MTM-CNM Family Conference in 2013, my beard was just a relatively baby back then. So cute.)
So now it is late 2016, and we are gearing up to head to NASHVILLE (awesome!) for the 2017 MTM-CNM Family Conference next July. And my jowl jacket is as long and fluffy as it has ever been. People make comments like "you look like Marx, the philosopher" (seriously, one of Will's doctors came up with that gem) and of course with Christmas around the corner I half expect little kids to start handing me their wish lists. And I was wondering... what will it be like at the 2017 conference? Will they mistake me for a lumberjack? Will I achieve wizardly status? Or will I make an impromptu decision one Saturday morning and break out the hedge trimmers?
Then it hit me... I should let you all decide. That's right, I am putting my luscious locks literally in your hands (not literally, but it alliterated). I am putting my beard's future up for a vote.
HERE'S HOW IT WORKS:
You vote by donating money right here on this page. One dollar = 1 vote. More dollars, more votes. You will be doing an awesome thing by helping to make the 2017 MTM-CNM Family Conference a success. But you will also have an opportunity to change my follicular destiny. Just comment "SHAVE" or "SAVE" when submitting your donation. I'll tally up the dollars and votes on the 4th of July and, provided one or the other has gained at least $1000 worth of votes, I will either Shave or Save The Beard.
Donate early, donate often! Get your friends to donate a couple bucks just because it is kinda crazy! THANK YOU!