Worlds Colliding

For those of us who parent medically fragile children, the world can shrink to the size of hospital room quicker than you can say "flu season".  Having lived in this world for the past almost-ten years, I'm familiar with its rules, its social norms, and its language...everything from where the best cafeteria food can be found to how to speak medical-ese without sounding like a know-it-all doctor.  I'm comfortable here, resigned, if not content.  I know my fellow citizens -- the other mothers of children with transplants, and tubes, and diseases-you've-never-heard-of -- and I've learned my way around the often scary landscapes.

Enter the normal world.  I don't understand it anymore, but as the parent of two perfectly typical teenagers, I'm required to spend at least part of my time navigating this world of "normal".  In that world, moms do not talk about their kids' latest blood levels, or use phrases like "that's a PRN med for her left lower lobe pneumonia".  Moms in the normal world volunteer to build sets for the school play, to count money at the bake sale, to host impromptu pizza parties and sleepovers for unknown friends of the teen.  These normal-world moms do not precede every sentence with, "As long as Jesse isn't sick..." or ask the vaccine status of the friends.  And so in the world everyone else inhabits, it is I who am the alien. 

Like my teenage children, I want quite desperately to fit in.  And so I show up at the parent meeting, hoping to "pass" as normal.  But amidst talks of the family vacation to Europe (impossible, since international healthcare is a system I'm not willing to navigate) and college financial planning (my kids' college funds were long ago spent on thrice-weekly travel to the transplant clinic), I feel like an absolute outsider.  I crave the familiarity of my alien world, the companionship of those who understand, while at the same time waging a internal battle of wanting so very much to belong in this land of normal, too.

And so I watch the clock tick yet another midnight as I wonder, again, how to balance a life lived in two worlds...

Why Midnight

There's something about midnight that makes it the perfect time for thinking deep thoughts.  As the parent of a child with a chronic illness and disabilities, I find myself awake in the wee hours of many nights, attempting to catch up on all that remains undone or just to catch a few moments of silence in the otherwise chaotic hours of the day.  There's something about midnight that allows us to say things we might not otherwise, to reveal our thoughts and feelings, certain that the secret moments between one day and the next will somehow protect us.  And so this blog is a place for me to say the things I might not otherwise, to speak my mind, share my fears, express my joys and sorrows.  Perhaps no one else but me will care what dreams, wishes and secrets float through my mind in the darkness, but perhaps there's a few like me, who find themselves alone in the dark, wondering how they ended up in this particular life.