I, for one, won't be sad to see these 12 months get the hell out of here. If you had a worse year than me and are still standing, or even lying face down in a pool of urine- Mazel Tova!
It's not easy being me.
So what made this year so awful? I mean, compared to my general degree of daily suck age. Just before the holidays last year I was, for no good reason, fired from my job. I remain unemployed for four months. That part, as bad as it was, seems trivial to me now. The omnipresent rain clouds on the Portland horizon were heading my way. And they would be packing punch like I'd never experienced.
January 2010 and our second child is on the way. Suddenly our daughter, 5 year old Sophia complains about always been thirsty. Within the space of a few days she begins to pee thirty times a day. Before the first week of January is in the books she's diagnosed with Type 1 diabetes. Sophia is immediately hospitalized. After the horror of a hospital stay that include some eight blood tests with huge needles, IVs, xrays and her screaming bloody murder, we settle into a routing of five insulin shots a day along with blood tests.
If you have kids, imagine puncturing them that much. Diabetes is hard enough to manage for an adult. Have you ever tried to control what a 5 year old eats? There's no "if you don't like it don't eat it" or sending them to their room without supper until they behave. It's a nightmare of planning and injections and doctor visits.
January rolls along. At a routine ultrasound visits for the new baby, things go horribly wrong. Instead of oohing and ahhing at the murky image of the fetus, even though you can't see a damn thing, I notice the technician is spending an inordinate amount of time around the baby's heart. An hour later we're across town at a higher res ultrasound surrounded by five doctors. You just know it's not going to be good news when they call in every specialist on the floor.
The baby's heart chambers aren't correctly formed. He will need full-bore open heart surgery before he is three months old or he will die. It's terrible news, not helped at all by the fact we're wallowing in diabetes land.
They take an amniocentesis. We wait. The thought comes up that the baby's heart condition is most common among Downs Syndrome babies.
Anything but that. We fight about what to do. The doctor's all recommend terminating the pregnancy- a less volatile term than abortion. We fight about what to do if.... I know I won't be able to handle it.
Next day the verdict and it's not good. Universal devastation. My wife became an old woman overnight. Everything tips and sways in the breeze. Any life we may have had beyond working, sleeping and eating ends completely.
Three months later out the baby comes. He looks like a Downs baby. They rush him out, he's not breathing. I don't know what to hope for, that he lives or dies. Before I can decide, he's back, tiny helpless and bright yellow with jaundice. We name hims James Alexander.
Two day later my mother, who I've haven't spoken to in twenty-three years, for reasons that won't be discussed here, dies.
She never meets my family.
Baby James soon has heart surgery. Seeing a nine pound sliced baby open like a Christmas turkey from navel to throat is is something no one should have to go through. James is hospitalized for five full weeks, four in th e ICU. He has no fewer than six complications, two of which are life-threatening.
He slowly, very slowly, over most of the summer, recovers.
Things both return to normal and don't. I get a job and was much happier without one. The high stress environment takes what little energy I have left quickly. My wife, a generally upbeat person, is unable to work for a full year from the extraordinary mental stress. Her job, our only lifeline to health insurance are uncertain at best. My health, poor before the year, decays. I have a broken body and spirit. I don't recover. There's no strength left. I move dully on. I am not "ok".
That was 2010, the year of suck.
We have a child with diabetes and a child with Downs. They have fared better than we have, evidence of the remarkable resiliency of children. Five year old Sophia, an extraordinarily willful child, tough as nails, has already learned to give herself her own insulin shots. Very few five year olds do that. Baby James is as fat as a tiny Buddha. A lifetime of Downs related complications await. Sophia doesn't care. She adores the little guy.
Life can always get worse. Hope and love and disaster and darkness come into and out of being all the time. Nothing is permanent. I suppose all we can do is cling to the good times because a big black train could be coming. Like my 2010.
I'm completely exhausted. I have this recurrent dream of driving through the desert, sleeping in a small truck with a camper shell. I drive and drive across the sand looking for a tiny puddle of water.
I wake up.
