Friday, August 26, 2011

Hemo Survey.

Who says being a hemo can't make you a few bucks? I saw a link posted on NHF's website, if you participate in the survey they send you a 75 dollar gift card. It took me maybe 35 minutes to do. They are only taking 200 participants so act fast!

Wednesday, August 24, 2011

Boys with arrows ... what could go wrong?

For those of you who have no family history of hemophilia, your frame of reference is a bit different than mine.  Butterfly needles, factor in the fridge and being my biology teacher's favorite example of X-linked traits were the same as shoes and socks and homework.  I have an advantage because I have seen what hemophilia was and what it is now.  (PS- it used to be lots worse).

I was reminded again of how life with this condition has changed when I read a blog post from a man named Guy Boss - it was published in HemAware online a couple of days ago.  Guy is older than my dad by a little bit but they are in the same generational cohort as far as bleeders go.  He writes a lot about his childhood and his parents efforts to raise two hemophiliac sons in a time when you didn't exactly pop a needle into your kid's port and call it good.

In this particular post he talks about wanting to be a cub scout.  After much anticipation and confusion about why the other boys were hauling their super rad scout uniforms on over to their den meetings, he  found out that he was not being allowed to join in the scouting fun.  The scout master gave many reasons, none of which I can repeat because I don't say things like that - even in quotes.

Fast forward the hemo time clock 60 or so years and there I stand (as a chaperone) with my son Henderson (not a hemo), my nephew Jack (hemo) and his twin Grady (not a hemo) at cub scout day camp... where they encourage 8 year old boys to shoot real arrows and real b.b. guns under the careful supervision of ... 16 year old boys.  There is hiking and full-contact-capture-the-flag and lots of "boy humor" the primary focus of which is underwear, butts and poop.  Clearly, this is what goes on when girls (and moms) are not around.  All of our scouts had a whole week's worth of scouting fun... a tiny act of cosmic redemption for my father, Guy and every man of their generation.  It is a tender mercy to be able to offer these experience to all my sons and I breathe a sigh of relief that I am me and not my grandmother when it comes to caring for our little (and not so little anymore) hemos.

*The picture at the top is Jack on "the jumping rock".  I did not take pictures at cub camp... I was too busy covering my eyes.