I have no words.

Heather, Maddie, and Mike, I hold you all so close. I’m so, so sorry. And sorry will never, ever be enough.

Fuck.

I don’t understand. I just don’t understand. And I’m just so sorry.

“When you look up at the sky at night, since I’ll be living on one of them, since I’ll be laughing on one of them, for you, it’ll be as if all the stars are laughing. You’ll have stars that can laugh!”

And he laughed again.

“And when you’re consoled (everyone is eventually consoled), you’ll be glad you’ve known me. You’ll always be my friend. You’ll feel like laughing with me. And you’ll open your windows sometimes just for the fun of it… And your friends will be amazed to see you laughing while you’re looking up at the sky. Then you’ll tell them, ‘Yes, it’s the stars. They always make me laugh!”

—The Little Price

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.

Oh, what a liar I am. This was a post I wrote when Alex was a baby and Dave had just told me about this new-fangled thing called Twitter. I promptly mocked it.

Until I signed up for it myself about a year later. And recently, oh recently, my lying ass completed her 1,000 Tweet.

In case you were wondering, my foot does taste delicious with a chianti and some fava beans.

On the way home the other day, Daver mentioned that he’d been posting on his ‘œTwitter,’ which sounded like he had yet another Internet Girlfriend to add to his collection. My knowledge about current stuff -n- things has always been lackluster at best, especially considering I only recently found out about this thing called ‘œMySpace.’ Come to think of it, I was amazed that our house actually had a microwave AND a dishwasher to boot!!

He explained that it was something you can post little bits of things here and there, kind of like a mini-blog. When I stopped laughing long enough to catch my breath, I promptly began laughing again.

Here’s the thing: I’d always found blogs to be incredibly self indulgent (keep in mind I have 2’¦what does that say about me?), useless, and boring, full of ramblings about what the owner thought about kittens and poodles and the like (although to be completely fair, I have found a TON of interesting blogs in the past couple months).

Mushroom Printing (ed note: my old blog) was started as kind of an anti-blog blog, and I found I rather enjoyed it. We only posted when we actually had something either semi-interesting or semi-coherent to say (some may argue that this is actually never), and I’m pretty sure we never discussed at any length what we ate for lunch (unless there was a pube in it or something).

To me, posting about the minutiae of your day sounds stupid and boring, only interesting if you were a teenager or an international man of mystery. If possible, this is MORE self indulgent than a blog. I’ll give you an example by writing what my day was like today, ala Twitter:

*Oh my God, I’m tired. WHY does Alex insist on waking up at 6:30? OHMYGOD did he pee a lot last night. AAAHHH! Why does he wait until I open the diaper to pee on me? Asshole.

*Ooooh. I’m hungry and my nipples hurt. YAY! I can eat a bagel now! I like bagels. I gotta hide these from Ben, or he’ll eat them all. DAMN, he spied my bagel and now he wants one. Guess I should’ve waited.

*Wow, the Internet is boring. WHY isn’t it interesting yet? OH MAN I GOT TO PEEEEEEE!

*That was a GOOOOOD pee. I feel SOOOOO much better now.

*Yum, bagels are gooooooooood. I’ve got to start Weight Watchers today. I wonder how many points are in this delicious bagel’¦OOOHHH I wonder how many are in a Monte Cristo sandwich. I’ve heard those are terrible for you, but ew, they sound nasty. Dave probably likes them.

*Am I really old enough to have a first grader? Damn, I’m old. But HAHAHAHA Dave is older. I should remind him of that.

*Hmmm’¦Dave sounds crabby. I guess he didn’t want to hear from me about how old he is at 8:16 am. I wonder why’¦?

*HOLY CRAP I’M THIRSTY! I need a Diet Coke STAT.

*That’s much better. I freaking love Diet Coke. I wonder if it’s addicting. It must be.

*NOOOO! Alex wants to eat again. The kid breast-feeds at least every hour. I guess it’s time to start the formula.

*OHMYGOD I have to PEE again. JESUS H CHRIST I GOTTA GOOOOOO NOW!

*Aaaahhhh. Better. I peed for like 20 minutes.

*Wow, the Internet is still boring. I wish people did cool stuff. And post on their blogs.

*Oh shit, soccer practice is tonight. So is Parent Night. Hahahaha, Dave has to go to Parent Night. I should remind him of that.

*Wowzers, he sounds cranky. I wonder why he’s cranky now? I didn’t mention how OLD he is, hahahahaha. Maybe it’s arthritis’¦CAUSE OLD PEOPLE HAVE IT!! HAHAHAHAHA. I should ask him if he has arthritis. And hemorrhoids.

*Man, he is UNHAPPY to talk to me again. I wonder if he’s having a bad day.

*The basement smells like pee. It’s probably cat pee. Sometimes, I hate the cats.

*There are too many socks for me to sort. I hate sorting socks. Dave has this weird hang-up about sorted socks. He got that from his mother. SHE is anal about sorted socks. I bet she doesn’t like it that my socks never match. Ever.

*Lunch is good. I like lunch. I had an egg white omelette and an english muffin and an apple. I wonder how many points are in that.

*WOW HOLY CRAP IS MCDONALDS BAD FOR YOU. LOOKIT ALL THOSE POINTS!!! I should tell Dave to not eat McDonalds anymore.

*Hmmm’¦he’s not answering his phone. I guess I should call back.

*Now it sounds like he answered but then the phone hung up. I should call back to make sure that he’s okay.

*Voicemail again. He must be busy. I’ll send him an email.

*HOLY CRAP THE BABY JUST FARTED ON THE CAT!!! HAHAHAHAH! Wow, that smells TERRIBLE. I wonder if he pooed.

*No poo this time. Maybe that’s why he’s so crabby right now. I get crabby when I have to poo.

*OHMYGOD I think I just heard a car pull up! Maybe Dave’s home from work!!! We can talk about being old together BECAUSE HE’S OOOOOLLLLDDD!!!

*No it wasn’t. Now I’m sad. Oh, I guess it’s only 1:30.

*FINE, I’ll go take a walk. I should move my fat butt.

*OH MAN!! I just got LAPPED on my walk by an old guy with orthopaedic shoes! MAYBE IT WAS DAVE!!! HAHAHAHAHA!

*I like my iPod, but I wish it was blue, not pink. I didn’t want the pink iPod, I wanted the green one, but they were out when I got this. Now I’m sad. Maybe I should break this one AND THEN I CAN GET A NEW ONE!!!

*Man, I’m HUNGRY. I wonder how many points are in a sandwich.

*Wow, that was a gross orange. It peeled well, but sheesh, it tasted like sawdust.

*I love our vacuum. Especially because it has a motor. Motor vacuums are awesome. I wish it were pink. I saw a pink one at Target and now I want it. Maybe I should go buy it.

*UHOH I gotta get Ben’s soccer stuff ready for him. I should totally get a skull tattoo on my arm so I don’t look like a soccer mom.

*THE BABY FARTED AND IT WAS HILARIOUS. It totally smelled like rotten eggs. I should tell Dave that.

*WHY is his phone now registering as disconnected? I should call back.

*Hmm, the phone company doesn’t know why his phones are all disconnected. MAYBE HE’S AT MCDONALDS AND HE DOESN’T WANT TO TELL ME. I’m gonna punch him for that. McDonalds is awesome and I love it.

*Holy crap, feeding the baby rice cereal is hard. It’s like peeing into a moving target at 20 feet. WITHOUT A PENIS.

*Man, the baby is soooooo cute. Too bad his butt smells like rotted eggs. He must get that from Dave. His butt smells rotted, too. Gross. Men are gross.

*WOW, I’m glad someone else is taking Ben to soccer. Practice is boring.

*OHMYGOD, I just accidently busted Ben for taking a dump-a-lump. I thought he was playing in his room when he was supposed to be getting ready for bed.

*sighs*

I still can’t believe I have followers on Twitter. My tweets are sadly no better than I’d predicted. Oh, and Dave is a whopping 2 years older than me. I’m not really a trophy wife or something. Sadly.

Okay, Internet, dish. What’s something you’ve done lately that you never thought you’d do.

My good friend, k@lakly over at this is now what I had planned–and also Cason and Caleb’s momma–sent me an email this morning asking me to ask my readers if they’d ever heard of this.

She took Cason into his 4 month well-baby visit and part of that visit is the ever-dreaded shots (Amelia got hers this week and it about broke my cold, shriveled heart). Today, he got diphtheria/tetanus/(and)pertussis, Haemophilus influenzae type b, polio, and prevnar.

Today, he also ended up in anaphylaxis and stopped breathing. His momma (thank GOD) got him to the hospital in time and he’s stable now (thank GOD).

But this has stumped the doctors who have never seen anything like this before so his poor momma, k@lakly, asked me to post to the Internet to ask if anyone had seen this before.

So, wise Internet, rather than ask you to evaluate the size of my ever-widening ass, I beg your help. Has anyone, ANYONE heard of anything like this? Send me an email at becky (at) dwink (dot) net or leave a comment here. Repost this, whatever it is that we can do to get this around.

And can everyone, EVERYONE send poor Cason and his momma some prayers and love today? Leave her some love here and she’ll be able to read it (she doesn’t have a post up about this as of yet).

Today is World Autism Day, and although I am a rebel who tends to ignore such days as “World Water Day,” “World Bread Day” and my favorite “World Plone (huh?) Day,” I can’t seem to ignore this one.

My firstborn son, my Ben, is on the spectrum.

After his ebullient first birthday party died down and all the gifts were opened (although primarily by the adults) we noticed that Ben was gifted a copy of a Baby Einstein DVD called The Planets. After some hemming and hawing on my part since reading that the American Academy of Pediatrics was strongly opposed to allowing children that young to watch television, one day as I was trying to do some homework quietly, I popped it in the DVD player. I figured that the American Academy of Pediatrics didn’t have the issue of trying to finish a ten page research paper on the use of secret police during the division of East and West Germany during the 1980’s'”fascinating stuff, I tell you–while entertaining a toddler and that they could take their standards and shove them where the sun don’t shine.

And if they didn’t care for that answer, they could always come over and babysit for me.

Even though he’d occasionally caught Sesame Street on the boob tube, I’d never seen the look on his small face peering out from his dark brown bangs before. It took me a couple of minutes to properly identify it. Ben looked, to my shock, as close to happy as I’d ever seen him. The thirty minute movie captivated him and he danced wildly to the music, flapped his arms at the pictures of the planets, while even occasionally smiling. For someone who’d never taken the slightest bit of interest in anything around him save for the pendulum on the grandfather clock in the hallway at my parents house, or the scads of Little People he’d carefully line up in rows snaking around the house, I was stupefied by his reaction.

People, even his own mother, he could have cared less about, a reaction that I had expected 16 years later from him. As a teen, I understood it, as a toddler, I was flabbergasted. I’d thought that all babies were programmed at birth to like people. And animals! Who doesn’t like animals? Ben, that’s who. Animals, even the doting black labs and cuddly kitties we lived with who adored him, not a single one of those interested him in the slightest. If we’d all disappear, only to return to give him such things as food and sippy cups, he’d have probably been perfectly content. His need for socialization and interaction was simply non-existent. Which was hard for me to accept since I had been known to both talk paint off walls and feel suffocated without the telephone affixed to my ear. To each their own, I told myself. Not everyone has the desperate need to be as social as you are, Becky.

After the thirty minute DVD returned to the menu, filling the room with a loop from Holst’s Mars Suite, he indicated through a series of hand-gestures–as he rarely opened his mouth to speak–that he’d like to watch the video again. Still shocked and amazed by this new side of my son, I carefully depressed the play button and watched his reaction closely. Once again, as the movie began and the heavenly bodies were depicted on the screen, he was enraptured. For all of the soothing and comforting that he would not accept from us, this movie seemed to do it all and more. I’d never seen my quiet, strange son so happy and contented in his entire life.

Over and over we’d watch this DVD until I probably could have acted the entire feature out by myself and without prompting, but he never tired of it. Instead, he soaked it all in, able to not only name the nine planets by heart, but soon learning the names of their moons. I followed his lead, and took this pint-sized toddler to the bookstore to pick out a book of his choosing. Rather than enjoying the board book Goodnight Moon that I suggested, instead he found a copy of an encyclopedia of the planets, designed for middle to high school-aged children and became enamored. Before bed we read it, between viewings of his DVD we read it, we read it until the spine cracked and the pages were well worn, and he absorbed every single piece of information inside it’s cracked covers.

While his compatriots in the proverbial sandbox were learning what sound a doggie makes (woof, woof, for those not in the know), Ben was learning to differentiate and name the moons of Jupiter, all sixty-three of them and had become able to identify each and every one, no matter how blurry the picture was. His favorite was Io, but Ganymede was a close second. He would spend hours and hours constructing elaborate solar systems with all of his toys, and would try his best to get the distances between them as accurate as possible when working with Little People and balls. It was quite the uncanny concentration and devotion for someone who was not even two years old. I don’t need to tell you that this was at the same age when I learned how to eat my own boogers and how best to fart on the dog without making her run away.

The depth of his knowledge was both freakish and amazing; awesome and terrible at the same time.

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.