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Friday, August 10, 2012

Dodging Bullets.

When we first found out that Kiedis had any medical complications, it was a sucker punch to the gut. I'd been quietly fearing the worst, knowing how lucky it really is to have a "healthy, normal" child, that it really is a roll of the dice and he was so unplanned, so unanticipated that I just hoped my body was enough to sustain him, to nourish him, and to create him as best as it could.

And then that first phone call, the results from my quad screen coming back abnormal, and can I make an appointment with 3948092489289 new doctors and clinics and specialists now please steeled me because apparently I rolled snake eyes.

In the days, over a week's worth, between that phone call and the follow up appointment, we researched these words we knew but didn't understand -- spina bifida -- and were summarily scarred by Dr Google and its partner in crime WebMD. We tried our best to talk through our fears. We had just bought a house that requires scaling a flight of stairs to even get to the front door -- that alone wouldn't fly with a child in a wheelchair, never mind the second-floor nursery we'd been setting up for him. At the time, we had a 1999 Corolla and a 2003 Sentra (Sport, no less) and knew neither could sustain the accouterments that would quickly accompany our unborn child. Hell, I had to keep the stroller folded up leaning against the front passenger seat, rendering the spot useless for anything else because it was too cumbersome to fit in my tiny trunk. We didn't know how we'd afford any of the care he would need on just Kyle's tiny salary (we didn't yet know we were being scammed out of our insurance) and my part-time job at a very small local company would be coming to a close with our baby's arrival, rendering us even more broke and with fewer options.

The future was bleak for us, then. And we were only a week into our marriage.

From that point, it's been nothing but ups and downs, a veritable roller coaster of diagnoses and unexpected complications and spontaneous conversions and miraculous recoveries and so much heart break because yes, I internalize it all and can't help but blame myself because if only I'd taken better care of myself, if only we'd been more careful, if only if only if only ...

... then he'd be okay.

But we keep throwing ourselves forward, over these hurdles as they pop up like booby traps and we keep telling ourselves yes, this is hard, but once we get past *this* things will get better. Once we get his heart strong, once we fix his spine, once he grows out of this kidney condition like they say he will, once he walks, once he speaks, once he follows two-step commands, once he potty trains, once he gets over his sensory aversions, once this therapy or this class or that new service or that new test comes back with satisfactory results, then we will have cleared that final hurdle and we will at last be able to consider him a normal, healthy child and won't all of our perseverance and hard fought work be worth it all someday when he's grown and independent, we can say look at all we did for you, for this moment of normalcy, look how much we gave to get you here.

And we will pat ourselves on the back and look at our normal, healthy adult children and be so blessed, so relieved that we did the right thing by them and all of this hasn't been for naught.

The fallacy, here, is that we never questioned that at some point, this would all end. That's what we've been told all along, by the endless litany of doctors and intervention specialists, that he is not irreparably broken, just behind, delayed, but he will reach his goals and his milestones at his own pace and soon enough this all will be a distant memory, a dinner party anecdote to share only when his pride and ego over-inflate and we have to remind him how lucky he is, that we all are, that he made it that far, and that normalcy is not something to take for granted because it does not come easily to everyone.

We'd been living in this special needs purgatory, if you will, a dark fantasy of enduring hardships and self-sacrificial flagellation all with a light at the end of the tunnel in our periphery, taunting us with it's purifying glow, beckoning us ever closer at a snails' pace, but with promise of full redemption on the horizon if we just persevere.

That changed, yesterday.

Yesterday, I sat in a small, white room with a drugged preschooler in a wagon, hugging and kissing some random dinosaur toy he picked up from the waiting room of the specialist du jour's office in the children's hospital, listening to the specialist's breakdown of the results of the entire day's worth of imaging and tests, trying to grasp the harsh reality being dealt to me in staccato-ed, heavily accented English.

My sweet boy will never be normal.

The tethered cord was not caught in enough time, and it likely damaged nerve endings around his bladder and sphincter, rendering him unable to completely control his own urinary processes. His kidneys and his reflux have not decreased as he's grown, but maintained and become more complicated. He doesn't completely void his bladder when he does empty, letting the stale urine fester infection that could quickly and unbeknownst to us because he can't tell us it hurts, spread to his fragile kidneys, with damage that has the potential to hospitalize him and put him on donor lists.

He has very little chance of potty training, and daily catherization is in our eminent future.

And to top it off, they suspect that his cord may have retethered, so a new litany of tests are right around the corner, to do this dance again that we thought we'd skirted just in time, last time.

Under the weight of this and the Bayley test scores, I feel like we've just been dodging bullets this whole time, thinking we were dancing in the rain and not under fire.

Except now I've been hit in the chest, and I'm trying so damn hard not to bleed out.