Last week after sprinting jauntily to the mailbox to see if I’d finally won that bazillion dollars I keep hearing about (a Nigerian Prince TOLD ME SO), when I found a pile of junk mail. After sorting through it, I realized that I had one piece that was not junk. From the county. Dreading anything I ever get from the county (on principal, not because they send me Nasty-Grams. DOWN WITH THE MAN!!), I tore into it.
It was a referral for Amelia to Early Interventions.
This wasn’t the first time I’d seen this paper (the name of the child was different, of course) and for some reason it smacked me blind. It’s SO not the end of the world to have a kid that needs some therapy. Shit, she’s in decent shape, by comparison (and by comparison, I mean NOT DEAD. Because this kills a lot of kids), and I really need to get the fcuk over myself.
I guess I’d just been in denial the whole time. Like going through the day to day motions with all that goes on in my Circus of a House, without thinking, honestly THINKING about what a diagnosis of encephalocele really means. I am, apparently, the only one who thinks this way because I called The Daver at work that day in a mild panic:
(ring ring)
“Hello?”
“OHMYGOD DAVER, OHMYGOD.”
“Uh…what?” (he knows better than to really worry when I call in a panic)
“Amelia….got her referral to Early Intervention,” I waited to hear him freak out.
“….” Typing sounds in the background.
“…and?”
I sighed deeply before we hung up. Apparently, I am the only one who is bothered by this. Figures.
I need to put on my big girl panties and just call for the appointments and evaluations, I know I do. Well, okay, I’ll tell YOU Internet, but let’s keep it between us, okay? I actually DID call. And then I promptly hung up when someone answered. Maturity has never been my strong suit, you know?
So I will do what I always do! Distract you with pictures! Because what else can I do? AND WHO DOESN’T LIKE PICTURES?
The Devil doesn’t. I swear.
I know that I post more pictures of my younger kids and while that would make it appear that I am favoring them, I assure you that it’s not.
This, this picture is Ben, In Real Life. Always in motion.
And this is my second born, Alex:
Playing with bath crayons. Outside the bath. Because he is that kind of kid. (what the fuck ever that means)
Daver was sick a couple of weeks ago with the flu–influenza I mean–and slept pretty much 24 by 7 for a week. While I am normally annoyed by him and his irritating and incredibly dramatical Man Colds, my cold, mean heart felt sorry for him.
MAYBE IT WAS THE SWINE FLU!! OH EM GEE!! (note the 2 exclamation points which should illustrate just HOW emphatically emotional I was being) Actually, I think it might have been.
And lastly, Amelia says, “You moron. It wasn’t the fucking swine flu.”
When I showed up to the pediatric transplant unit for my first day of clinicals, it was mercifully dark and quiet, the nurses flitting purposefully about as stealthily as they could. The only sounds I could make out beyond the steady mechanical hum found on any hospital unit were the occasional IV beeping, signifying, perhaps, an occlusion in the line or that a bag of fluids was now emptied. It was quieter than any unit I’d ever been on before.
Reds and blues and bright yellows lined the hallway and I noted cheerful balloons painted on the walls as I thought to myself, how wonderfully non-clinical it all looked. How perfectly child-like. It seemed only fair that if a kid were sick enough to have to be in the hospital, at the very least, they could feel at home.
I spied a television with a DVD player and PlayStation stashed in a corner, and marveled at how this hospital really had been designed with children in mind. The unit fridge was stocked with puddings and chocolate milk and chips and graham crackers; all stuff my own two-year old would have happily eaten. I felt as though I might actually be in some sort of elaborate daycare facility rather than a major children’s hospital. There was even a McDonald’s in the basement.
It wasn’t until I got my first assignment -a baby; severe liver failure- and saw that my one-year old patient was the size of a three-month old that these children weren’t having much fun. These kids weren’t on vacation. They weren’t at daycare. They were sick as hell. Some were well on their way to dying.
And still, even as these children died, life went on outside.
People bustled by on the streets, knowing, perhaps, the name of the hospital and the types of patients, but never knowing that fear. The fear that lives in your gut once something horrible happens to you and you know how in the cosmic scheme of things, there is no “fair.” They’d never know how terrible it is to listen to children -innocent children- in pain. These people would never have to voluntarily inflict pain upon their own flesh, their own blood, because sometimes life deals you a wild card, and you do the best you can.
They’d never know about the secret places in the hospitals, the PICU’s; the NICU’s where small, but real lives routinely hung in the balance. Where cosmic scales made absolutely no sense. Where kids lived and where they died.
This secret place, the land of tears.
When they’d think of hospitals, they’d think of the places where old people went when they were ill. Where your appendix or a foot or two of colon would be removed and you’d go home. Cured. Where you’d splint your broken arm, x-ray a broken leg, and bandage up that nasty gash on your finger. Where old people died.
Hospitals weren’t places for children. Because in a fair and just world, kids wouldn’t get sick and kids wouldn’t die.
Kids wouldn’t be born without brains, or with only part of their brains, or born too early, too soon to live. Babies wouldn’t be born still. Kids wouldn’t need dialysis or organ transplants. No kid should have to know the torture of chemotherapy. No parent should have to send their kid to the morgue. No family should have to plan a funeral for a child.
Death, dying; transplants and cancer, those are things that should affect the old, the people who had loved and lost, married and had their families, kids, grandkids; people who had lived.
—————–
My universe is less random than I once thought it to be.
When I birthed my sick daughter, Amelia, it just so happened to be where the very same children’s hospital where I’d previously worked had just opened up a satellite unit. At three weeks of age, she underwent neurosurgery, and for the second time in her life, she became a patient there. First in the NICU, then the PICU.
The monitors blipped intermittently for my daughter, gown bearing the same logo I’d seen so many times before, when her heart rate dipped or she’d forget to breathe and watching them, I’d shake her tiny feet, whispering breathe, baby, breathe into her pink shell of an ear. And then she would inhale, those glorious oxygenating breaths filling her lungs as the monitors would once again blip normal vitals. The alarms would stop shrilly alarming and yet another crisis would wink at us in the rearview mirror as it passed.
Her father and I signed furtively in and out of the NICU, then PICU after we were buzzed in by some unseen, nameless, faceless person into a locked, secret unit; mere ghosts of ourselves. We’d drift in and out for the tenth or sixtieth cup of coffee to keep ourselves awake and functioning, getting gluey food from the cafeteria to put into our mouths and chew, never tasting it. Sometimes, our paths would converge with other shells of parents. We’d smile knowingly as we passed; the kinds of smiles you smile without any trace of joy. Those commiserative, “you too, eh? Well, FUCK,” smiles, not the, “hey, friend, how are you?” kinds.
We learned later that we were the lucky ones. The ones that were buzzed out of this unit with our daughter in her carseat, strapped tightly in and screaming her head off.
The unit of sadness, of broken dreams and tears. Laughter and heartache.
This secret place, the land of tears.
After Amelia was born and it was determined that there was some sort of issue with her head and brain (bright spots, although excellent on jewelry–think diamonds–are not something, apparently, you want to see on an MRI), I could barely watch that commercial with Alec Baldwin and the brain. Nor could I watch House, MD without having to avert my eyes whenever the picture of the brain came up in the credits.
Neurotic much?
Why yes, yes I was neurotic. I was probably as bat-shit crazy as I’ll ever be (God willing) and there’s a small part of me that feels as though I should be apologetic for it. Things did, after all, turn out as well as they could, especially considering the diagnosis.
But I’m not sorry. Not even remotely. Since I hadn’t thought there was an actual encephalocele, I’d actually prepared myself for a better Worst Case scenario than. Which means I wasn’t nearly as neurotic as I could have been. How frightening is THAT?
Besides, from the moment she was born, no one told us jack SHIT about anything. It was kind of remarkable, just how little information the hospital and it’s employees would divulge. I probably could have learned more from the lady who cleaned my bathroom than I did from all of the nurses and doctors. COMBINED. My friends who have been there will know if that’s standard or not, but damn, how powerless did we feel?
Moving right ahead, now that my neuroses have been well documented yet again. (If that’s not the purpose of blogging, I don’t know what is)
Amelia turned a whopping 2 months old on the 28th of March and we celebrated, perhaps a bit belatedly, by going to back-to-back doctors appointments. Lucky girl!
Before we went to her pediatrician yesterday, I had a rare couple of quiet minutes wherein I waxed eloquent (If Aunt Becky waxes eloquent and no one is around to hear it…? Did it happen?) about how relieved I am that this is my last child. With my other two, even with Ben’s autism, I was much more laid back and relaxed.
So what if Ben ate from exactly one food group (White Food, for those who wonder)? Who cares if Alex didn’t walk until 16 months? That rash on his ass? Slap some Vaseline on it and call it a damn morning.
But suddenly, after Amelia was born and the threat of her developing abnormally was a Front and Center Issue, I consistently noticed things about her. Wait, she’s rolling her eyes into the back of her head as she sleeps, IS THAT A SEIZURE? Oh my GOD, what is WRONG with her hard and soft palate? IT LOOKS WEIRD.
From neurotic to MORE neurotic, I quickly went.
Until yesterday, when I went to the ped with her and I had an epiphany (ala Arby’s = RB’s = Roast Beef! What? I never claimed my epiphanies were bright.). My daughter seemed…normal. Completely normal. She eats well, has regular craptastrophies wherein several items of clothing are damaged, smiles when she’s happy, pouts and screams when she’s mad, and acts just like a…baby.
MY baby.
Maybe she’ll never join MENSA (to be fair, they’ve certainly never beat down MY door either), maybe she’ll have as hard a time with fractions as her dear old mother does, and maybe she’ll never be known as a Brilliant Mind.
Say it with me now: So. Fucking. What?
Today, at her follow up with with her neuro (F/U in medical lingo. Which always brought me much satisfaction to see in a chart when I was an actual nurse because I am very, very mature) she was discharged from the neurologist who told us that we’d see him in the next lifetime. Which may be entirely too soon for me.
Next week, we’ll be visited by the county health nurse who will follow Amelia for the next two years to determine if she’s meeting all of her milestones. We’re also being followed by the University of Illinois. Apparently her diagnosis is not only rare, but totally interesting!
And they’ll probably find something, because if you look for something long enough, you’re bound to find something or another wrong. But I don’t care.
Normality is totally overrated.
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