The Dark Side

One of the things I wish people could see is what it's really like to live with and raise a child with complex medical issues, especially when that's combined with a disability.  J. has to get treatments every week to help provide her with an immune system.  "Treatment" seems a fairly innocuous word, but what it really means is four needles -- 2 stuck in her back, 2 on her inner thighs -- and about 3 hours of lying around while blood product is infused.  It also means wrestling her in to a nightgown, fighting about where the needles are going to go, and explaining to the teenagers, for the ten thousandth time, that no, I cannot make dinner because right now I am busy.

J. is nearly 10 years old, and in many ways, is just like every other ten year old girl -- a little bit of attitude, some push for independence.  But in lots of other ways, she's like an overgrown toddler.  She still needs help to get dressed (try putting a leotard and tights on a very large sack of potatoes, and you'll get a general idea), needs help bathing, and can't have unsupervised playdates with new friends, because she can't navigate stairs on her own, needs help in the bathroom, and doesn't always understand social cues.  She also has meltdowns much like your average 2 year old.  Trying to calm a screaming, sobbing, snotty-nosed 90 lb. girl down in the middle of the mall is pretty much guaranteed to elicit lots of stares, reminding me again just how NOT normal my life really is. 

Most moms I know are completely exhausted between the demands of caring for their homes, their children, their spouse/partner, and their jobs.  Moms of kids with special needs live with a level of exhaustion that literally defies explanation.

Letting Go

Everyone has to learn to let go, at one time or another.  We let go of a hand to take that first step.  Let go of home so we can travel.  Let go of freedom for the gift of having children.  Those of us raising children with complex medical needs sometimes have even more to let go.  We let go of the dream of a healthy, rambunctious child, of the ability to live as others do.  And sometimes, we let go in the deepest, saddest sense, too, when "letting go" means "saying good-bye". 

It's been a year of good-bye's for me, all of them difficult in ways I never could have imagined.  A year ago, R., a beautiful 9 year old boy with a smile that defined the term "imp", suddenly died of his disease...a disease he shared with many of the children I know, including my own child.  R's death was my first experience with the loss of a child, and it tore at me.  The sight of his parents, and baby sister, making the words "grief-stricken" seem immeasurably inadequate.  The shock of seeing a little casket lowered to the ground, the days I spent weeping for a boy I knew only from summer camp.  And then Y., 10 years old and my best friend's daughter, a girl who shares so much in common with my own little girl, died in June, at home in the arms of her family.  A more expected death, perhaps, but no less agonizing in its reality.  I learned, again, how to grieve for a child, this time one I'd known since she was a darling 2-year-old in a charming pink hat, holding court in her hospital bed after the transplant where we met.  I learned how to sit with a mom who has lost her child, who has known, always, that she would lose that child...and who now must cope with the fact that knowing doesn't ease the pain.  And through both of these experiences, I've had to face again the reality that my child, too, has a life-threatening disease.  She has survived so many times when doctors said she couldn't...but there is always, always the fear of the time that they are right. 

Death is not the only loss, though for me it has been the hardest.  But saying 'good-bye' to a friend as he moved away brought a different kind of sadness.  The sadness of losing someone who understood the fears, and of seeing that change, even when we least want it, is inevitable.

It has been a year of grieving, of trying to find the small moments to celebrate, of discovering that faith alone is not enough.  A year of trying to understand the impossible, a year of learning to let go.   

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.