Wednesday, March 9, 2011

Catchup, Aisle 3

Too many catch-up style posts.  This will not be fun to read in the years to come.  Too many gaps.  This portion of family is life if very scattered.  We eat meals together every night but sometimes that seems like very little to hold the whole fabric together.  Gene is in between sports.  Needs a job.  Loves his girl.  Thinks we are fine, but annoying.  Neil is in danger of becoming chronically middle-childed.  He rarely needs bribes because he has his shit together and so often gets nothing whereas Gene and Gus are always on the take someplace.  Trent and I need to address that.  If I were Neil I'd have figured out the advantages to holding back a little, putting forth a little less effort but I was WAY sneakier than Neil.  Bay is Kindergarten-Pop-Culture-Girl.  If it's the fad, she wants it.  She is in the middle of a group of girls who will probably be pretty tight right through school.  It will be fascinating to see this group given that she stays with them through high school.  Gus rides Neil's big heavy-duty dirtbike and has no fear.  Trent and I use up all available fear as we watch him.

In a brief conversation with Gene a few nights ago I realized that he really doesn't appear to understand the gravity of CF.  I was very annoyed about this until I realized (in rather an epiphany) that I have always explained to people that when you ALWAYS "have" something, it is very different emotionally and psycologically than "developing" something.  The journey is vastly different.  This makes me look brave and daring and heroic and all those fabulously admirable traits.  The truth is however that I don't know any other way,  I could impress the hell out of people just by telling them how many pills and tablets and now even SHOTS I take a day.  But it's just a number and it takes a minute and I can (impressively) swallow many pills at once.  (It's not as impressive as you might think and it's not a skill that you can be paid for, unfortunately.)  BUT the epiphany came when I realized that I expect Gene to understand the "gravity" of the "situation" although I go to great lengths to down play it and work around it in my day to day life.  My kids grew up with me taking pills, doing occasional Home IVs, being healthy, being sick, going to long, drawn out, far away doctors appointments.  My kids knew someone who'd had a double lung transplant long before they knew anyone who'd had a broken leg.  I never gave them credit for adapting to having a sick mom in the same way that I have adapted to being a sick mom and GOD  FORBID anyone call ME sick!    So why in the name of GOD would I be annoyed that the kid would take CF in his stride.  Wasn't that my goal all along?  And isn't it still?

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Port Angeles, Washington, United States
I recently moved with my family to Port Angeles... we are kind of re-inventing ourselves... I am 39 and have Cystic Fibrosis.

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