Zen Master Quinn

Doo Wop

2010-05-16T19:59:00.090-04:00

"Failures are the finger posts on the way to achievement."

-C.S. Lewis

For the sake of anonymity, let's call him B. B is my seventeen-year old stepson. I love B, but these days, I don't love-love him. I’m trying, but he is so getting in the way of any chance I might have of ever experiencing any sort of enlightenment. Just when I think I’m doing a fairly decent job of following the Tibetan’s advice to “keep my mind as vast as the sky and my daily conduct as fine as a grain of sand”, B swaggers in with a shit-eating like-that-is-EVER-going-to-happen kind of grin and knocks me right off my higher-consciousness horse faster than I can say, “Hey, what’s so funny?”

Despite my southern upbringing, I’m not naturally one of those dust yourself off and hop back on the horse that just knocked you silly kind of girls. I like a challenge, but I don’t like humiliation. And most of the time I feel utterly disgraced by my failed attempts to show any amount of loving-kindness towards B, so I usually just slog through my time with him, not even making an effort to try to find that holy spark I know must exist inside of him …somewhere … somewhere way out of plain sight … and I secretly hope that nobody notices my negligence.

I can only assume that my stepson enjoys the role of Jenny’s bad-ass spiritual stumbling block, because he has an uncanny knack for getting into the most trouble when his Dad is out of town. Today, B has been expelled from school for hurling a yogurt and the trump card of epithets at the cafeteria’s little old lunch lady, and, because God seems to delight at tossing banana peels in my path, I’m the one who gets to fetch our wayward child from the principal’s holding cell.

“Listen, B,” I say, more plea than command, “You can’t use the ‘C’ word to describe one woman, without implying that ALL women are the ‘C’ word.”

“Jesus, Jenny, you don’t need to go all femi-nazi on me. The yogurt wasn’t even open.”, he says, and stares out the window of our car, trying to ignore his little brother who is in the backseat, squealing with glee at the sound of his “Bubba’s” voice.

I wish I heard what Quinn hears in B’s voice -- (some buried joy, only audible to pure spirits and dogs?) -- but I don’t. The sound of him only makes me bristle, cringe, or sometimes cry. I look at his pimply cheek, a few stray hairs on his chin, the belt buckle made of bullets and the steel studs sticking out of the shoulders of his jean jacket, literally rendering him unsafe to hug. I think about a therapist I saw when I lived in Chicago, the therapist who helped me embrace the idea that I might actually be up to the task of packing up my entire life and moving East to marry a recently widowed man with two grieving teenaged sons; I think about how serene her blue eyes looked when she told me that all I had to do was “be there with love”, promising that that would “be enough”, I think about her telling me that “just because something is impossible, doesn’t mean we shouldn’t try”, and then I think about calling her and asking for a refund.

It doesn’t take a trained therapist to assess that my stepson’s “acting out” while his father is away is an attention-seeking tactic as well as his way of protesting abandonment, although plenty of therapists have backed up this claim. B was twelve when his Mom was killed in a car accident. Hoping to mend an argument she’d had with her boyfriend earlier in the day, she drove off, in the middle of the night, while B and his brother were asleep in their beds. And she never returned.

And because I am now the mother of a son, a sweet three-year old who could one day grow up to shock and disappoint and pain me with his misogynistic language, I am considering it my duty, my gift to B’s mom’s memory to make sure the word “c*nt” is extricated from her son’s vocabulary. I hope any woman would do the same for me.

“You wouldn’t use the “N” word, would you”? I say, trying to go all Malcolm X on him.

“That’s different,” he mumbles as he grabs a case of cds from the glove box and begins searching for some music he doesn’t totally hate.

“You guys are so lame. What is this crap? You need some Sex Pistols. Some Misfits. Subhumans.”

“I need another misfit like I need a hole in the head,” is what I want to say, but instead I blurt out, “I grew up on the Sex Pistols.”

“Sex Pistols are SICK”, he offers, still thumbing through our disappointing choices in tunes.

“Yeah, I saw, ‘Sid and Nancy’, you know, the movie, like eight times.”

I didn’t. Really. I saw it once. And wanted to run screaming from the theatre. But I’m searching for some common ground and right now Sid Vicious is the only sandbar in sight and if I don’t grab hold of him, I’ll never make my way across this ocean that separates my stepchild and me.

Over the past few years, B and I have had a couple of roof raising blow-outs; the first one was mostly just screaming, but screaming in front of Quinn, and later that night Quinn had a seizure. I don’t know if witnessing a lot of shouting and door slamming can cause a seizure, but I definitely know it ain’t the fastest way to calm an overtaxed nervous system. Needless to say, I was beside myself with guilt. I vowed to never yell in front of Quinn again. I’ve managed to keep my vow, even during the second major quarrel, which involved me ducking my way through a lot of flying objects until my husband, who is the most gentle man I know, had to tackle his son to the ground to contain his rage. B “ran away” to his friend’s house for two weeks and this time it was my husband who was beside himself with guilt. We were clearly not turning out to be the parents we had hoped to be.

“You wouldn’t use the N word because you know that it’s dehumanizing, just like the “C” word. You know that by using it you’d not only be hurting the person you were calling the name, but you’d also be demeaning an entire race.”

“Whatever. I’ll put on some Clapton.”

“No, not “whatever” … I know you know what I’m talking about.”

“I know what you’re talking about, but it’s stUpid,” he glowers.

How is it that I KNOW this kid is in acute emotional pain, I know he didn’t ask to move to this small town in the Berkshires after twelve glorious years as a New York City kid, I know he didn’t ask to be motherless or for his father to remarry and have a child who needs more attention than, well, than him, and still, knowing all of this, I can’t help but lapse into my fantasy of big burly men arriving at my house with a roll of duct-tape, ready and willing to do whatever it takes to drag this kid to the middle of the wilderness for a year, or ten, or however long it takes for him to wipe that look right off of his face?

Something about B brings out the fighter in me, and it’s not the fact that he’s not “my own”, because I have another stepson, “A” who doesn’t raise my ire one bit. In fact, I delight in his presence. You would have thought I'd known “A” his entire life, wiped his bottom, fed him his first solid foods and toothfairy-ed his every tiny tooth, because, despite the heavily tattooed "sleeves" on his arms and his preoccupation with heavy metal music, I can only see the sweet, vulnerable boy inside of him.

Some people believe that you see in others what is really inside of yourself, but if that’s the case, when I look in the mirror of B, I am surely not the fairest of them all. I am angry and sullen and selfish and narcissistic and rude ... and sometimes downright mean. And I don’t like myself very much. I suppose that’s true of most of us some of the time, but unfortunately it’s true for some of us most of the time. I was hoping to live my life only bumping up against my shadow side occasionally, but as B hits the pinnacle of adolescent egoism, I find myself becoming chronically mean-spirited in his presence.

The problem is, the Universe has eyes. Everywhere. And nothing goes unnoticed. Even a little withholding. Even the slightest reluctance to see the holy child inside of the heavily armored boy/man sitting beside you. It’s not enough to restrain yourself from tossing pierced bodies out of moving vehicles, it’s not enough to bite your razor-like-tongue when it would be so easy to deliver some serious lacerations with said weapon, it’s not even enough to “be there”, unless you’re there “with love” because according to the Universe, crimes of omission count as much as crimes of commission. I know, because I have an annoying habit of reading the fine print and my Contract with the Big U reads something like this:

“Yo. Until you learn to love-love B, you will be prohibited from touring with The Buddha and His Band and you will certainly never get to be one of God’s Doo-Wop girls. Instead you will be relegated to the box office, selling tickets to the main performance … on commission. So if you ever want to see the big time, get off your ass, open your heart a little wider and rise above, sistah.”

I’ve been trying, REALLY, I have, but my efforts rarely yield more than a flicker of transcendence. And for those of you thinking that a little “tough love” would do this kid some good, short of the burly men with duct-tape, we’ve been there, done that. And we’ve discovered that B secretly LIKES it when you yell and punish and set boundaries that he will trample in jolly expectation of how pissed off you’ll be when he does … because he’s desperate for you to confirm his worst suspicions: that the world is shit, that people can’t be trusted and that there is no such thing as unconditional love. He is determined to push every last button in sight until his outer world reflects his inner world, because then his misery is justified, he’s just a part of the natural order of things, not some crazy teenaged mutant. The problem is, he is a crazy teenaged mutant and the only way to engage with his goodness is to hunt it down and drag it into the light, which is ever so exhausting.

“Who do you love most in the world … besides your Dad?"

“I dunno … Emma”

“And how would you feel if someone called Emma the “C” word?”

“She’s not one, so nobody would call her that.”

“That lunch-lady’s husband might feel the same way about his wife.”

“No way that c*nt is married.”

I forgot to mention that B has two ambitions in life. One is to return to New York City the day he graduates, IF he graduates, which is looking less and less likely with each passing day, and the other is to become the next Dane Cook (think: Lenny Bruce, but without the charm).

“Listen, B, I say, a little more demand than plea, “Language is a powerful tool. You shouldn’t wield it so carelessly. And I don’t ever want you to use the ‘C’ word in my presence again. It’s disrespectful.”

“Nobody cares if you call a guy a dickhead.”

"The dickhead might care, but still, the point is, it’s not the same thing. You get that, right?"

"You can call a man a c*nt, too."

"B, I mean it. And if Quinn’s first word is the “C” word, you will have yourself to thank."

“Except that kid is NEVER gonna talk”.

He has skipped my jugular and gone straight for my heart.

As if clutching my chest, I check the rearview mirror and see Quinn wordlessly uttering sounds of delight, “Ooh ooh aah ahh gaugh, guagh, gaugh” as he’s joyfully flapping his hands … his autism waving its bright red flags for all to see. He can’t help it, it’s his way of saying he loves a good car ride, he loves to watch the world whiz by from the safety of his raised seat, and he especially loves it when his brother rides along.

But B is right. It doesn’t look hopeful. Quinn and I may spend our whole lives just driving around these mountains, lost in our language-less tomb while B saunters about, foolishly trading in his bounty for apathy, his plenty for profanation … I may never even get to scold Quinn for using the “C” word or the “F” word or any other word because for some (unfathomable, inane, WTF, make you question the intelligence of the “Infinite Intelligence”) reason, my sweet boy was born without a boatload of capacities to throw overboard as soon as the seas got rough ... but B, B was given twice his share! I don't think it’s the injustice of it that pisses me off, though, because I’ve accepted that the world’s not fair, and whenever I get uppity in my requests for special consideration for myself or for Quinn, I remember that ancient bit of wisdom I plan to make into a T-shirt for B's 18th birthday: “Expecting the world to treat you fair because you’re a good person is like expecting the bull not to charge because you’re a vegetarian”. So, no, it’s not the injustice, it’s not even B’s snotty nose that he constantly wipes on his sleeve, or the smell of pot on his steel spiked jacket or even the eyes at half mast that never look at you when you talk, it’s the … ding, ding, ding, WASTEFULNESS of it all! It’s the utter disregard and squandering of life I can’t abide.

“Squanderer!” I shout.

“Whaaaaa?”

“You know, for someone who claims to hate the Berkshires so much, you sure have embraced their accent. You sound like you were BORN here.”

“Whaa are you TALKIN’ about?”

"There’s a T at the end of “whaTTT”. And see there, that’s a mounTain, not a “mou-ain”. And when you move back to New York, and you call the wrong woman the “C” word, you’re gonna get yourself stabbed to death."

“No way. Not in New York. That’s’ why I like it there, ‘cuz people can say “c*nt” and nobody freaks the fuck out.”

“Listen, BUSTER, I mean it, don’t ever say that word around me again or you’re going to be sorry.”

I literally see B’s hackles raise, he’s gearing up for things to get good, for the Universe and his evil stepmother to prove him right, because he knows I only say “Buster” when I’m a raging lunatic. He knows the real me would never use a word like Buster, he knows he’s got me where he wants me, and he knows if he goes all “Constitutional” on me, I’ll completely flip my lid.

“If someone’s acting like a c*nt, it’s a free county, like The First Amendment and stuff, I have my right to call it like I see it!”

“Freedom of Speech might give you the right, but it doesn’t MAKE IT RIGHT! You wanna know who verbally defiles other human beings for the fun of it? The KKK and Nazis and all the other subhumans out there! It’s how we descend into barbarism, my friend, rape and torture and genocide”!

“Calm down."

“Do you know how many people have died so that little old you could have your FIRST AMENDMENT? But hey, thanks to them, it’s your RIGHT to SHIT all over their graves.”

“I have a right to tell the truth.”

“The truth?”

“Yeah. The truth.”

“Oh, yeah, I forgot, because You, B-ALL-MIGHTY, YOU are the authority on all things CUNT!”

I’m sorry, I should have warned you, but these blog posts don’t have ratings. And I know. I know. I have broken my vow and then some … and my hopes of ever having a “vast” mind or “fine” conduct have been mangled beyond recognition. And I’m keenly aware of the fact that absolutely nothing good can come from mothers saying the word “c*nt” in front of their sons. I get it. But you can see how it could happen, right?

It seems I’ve not only been knocked off my higher-consciousness horse, I am now rolling around in a heaping mound of shame. I have to hand it to B, there’s no better man for the job. He seems to intuit this because he’s sporting a humungous smile, the likes of which I haven’t seen for years. For a moment, he appears stripped and unguarded, or is that just me? Either way, a memory finds its way to the surface, and I lunge for it before it disappears into this endless ocean that separates my mutant and me.

And that’s when I get my flicker. Don’t worry, it’s just a flicker. To put a “flame of transcendence” at the end of this story would render it a fairytale and we all know there’s never been a successful fairytale with a teenager as a main character since the beginning of time.

But the memory goes something like this:

B is twelve and in the throes of grief over losing his mom. He and his dad and I are walking in Battery Park, we’re headed to the movies, it’s a movie B wanted to see alone with his Dad, it’s one of their bonding strategies, to only see certain movies with each other and with no one else. But the movie premieres the weekend I’m in New York visiting … and B graciously suggests that I tag along, so I tag along, but I’m keeping my distance, wary of appearing too eager, wary of doing anything to disrespect his mother’s memory. And then suddenly B is running up to me, grabbing my hand and holding it as we walk. He’s twelve and he’s holding my hand … in public. Then he says,

“If somebody saw us walking like this, would they think we were a family?”

“Maybe," I say, unsure of what he wants the answer to be.

“I bet they’d think you were my mom.”

“They might.”

“Because you have brown hair and I have brown hair …”

At the time, it was the only sandbar in sight. And he leapt on it as if his life depended on it.

“Listen B, I say, returning to my pleading, only this time there is a tremble in my voice and he hears it. “You gotta stop flipping the bird at Life. You’re the strongest, smartest, most able-bodied, quick-witted, beautiful boy I know and you take it all for granted. Worse, you piss it all away. Like it’s nothing. You could be anything you want and you choose to be a dickhead.”

I think of all of the parents who have ever said those exact words to their teens and I feel myself being hoisted back on my horse by thousands of invisible hands.

“You don’t understand, Jenny, she’s like the worst lunch lady ever, and she wouldn’t let me return my yogurt and get something else, and it wasn’t even opened yet, and you guys never put enough money on my lunch card so I have like nothing to eat and it’s the stupidest rule, cuz I didn’t even open it, and she was smiling, like she was happy I’m going to starve.”

“Nobody wants you to starve, kiddo. But I don’t care how hungry you are, you don’t get to be a jerk.”

“Do you think you could drop me off in town so I can get a chicken sandwich or something?”

I don’t know if I’m feeding the beast or nourishing the child, but I pull over in front of Subway and hand him a ten spot … and I think ... so what if I’m a long ways off from ever sitting at the Buddha’s feet talking detachment and stuff, so what if I’m way at the bottom of God’s Doo-Wop waiting list, and so what if I don’t get my happy ending. Just because something is impossible, doesn’t mean we shouldn’t try.

“I only need like five,” he says, wary of accepting more than he can repay.

“It’s all I have.”

“Okay. Thanks,” he mumbles, grabbing my offering, climbing out of the car, and blowing kisses to Quinn in the backseat before he shuts the door and goes his own way.

He’s seventeen years old and he still blows kisses. I love-love it when he does that.

Provisions For The Journey

2010-04-07T16:47:00.025-04:00

I know that I have life

only insofar as I have love.

I have no love

except it come from Thee.

Help me, please, to carry

this candle against the wind.

--Wendell Berry

When we first arrived at the Neonatal Intensive Care Unit or NICU (“nick-you”), I did what every good girl who is drop kicked into an alternate reality is taught to do: I smiled, observed the customs, learned the language, kept my voice low when asking for directions, and even made friends with the natives, but in truth, I was ceaselessly scanning the strange and distant galaxy for the nearest exit so that I could run like hell when given the first opportunity.

I loathed everything about the place. I hated the pre-entry, compulsory three-minute-hot-water-hand-washing that caused my fingers to crack and bleed and never failed to remind me that I was a polluted outsider; a germ-ridden giant amongst rows and rows of angelic, immuno-compromised Lilliputians. I hated the way the nurses called everybody with leaky breasts, “Mom”, and THEN when the alarms on our babies’ monitors went off, would show off their name-memorizing abilities by bandying about words that were not part of our limited lexicon.

“No need to worry, Mom, just a little bradycardia”.

“Oh, thank goodness, Nurse, I thought it might be something serious like his heart stopped beating.”

I hated the Chinese chicken salad less than I hated anything else in the cafeteria, but I hated it all the same. Especially the limp little canned orange slices masquerading as mandarin fruit. God, I hated those. I hated that none of the doctors ever talked to us unless we backed them into a corner and I hated that the old ones, the only ones who really knew anything, had breath that smelled like rotting wood. I hated how much blood they took from the Lilliputians, day after day after day. I hated that everywhere you turned you saw the name “Kimberly Clark”. Who the hell was this Kimberly Clark and why did she feel it necessary to monopolize the entire planet’s rations of paper towels, rubber gloves, and disinfectants? I hated the snow that collected around the hospital’s windows, and then had the audacity to STAY there. (Melt, damn it! Don’t just sit there, do something!). I hated that my husband could peacefully doze by Quinn’s incubator, like that irritating little itsy bitsy spider, so sure that the song would end with sun coming out to dry up all the rain. I even hated the sweet little minister, in her sweet little starched collar, who offered sweet little prayers and platitudes for us. And truth be told, if Buddha himself had been there serenading my baby boy to sleep, I’d have hated him, too.

I had enough good sense to know that I was expected to keep my odium to myself, but my nose was constantly twitching in the wind, searching for the faintest scent of fury amongst the other mothers, hoping to find an ally. But alas, all I saw around me were the complacent faces of mothers and fathers who had long ago adapted to this new way of life. I suspected some of them had acclimated unwillingly, but many of them seemed to embrace this new terrain with such ease and grace that I didn’t know whether to pity them or revere them. Were they saintly or insane? After getting to know Belinda, the mother of the preemie who was situated directly across from Quinn, I was leaning toward the latter.

Belinda had been holding vigil for her daughter, Camille, for three months and in that time had erected the most elaborate pink shrine to ever grace an incubator and was well on her way to finishing a Pulitzer prize worthy scrapbook detailing every precious, if not perilous moment on planet NICU. She had found a way to not only “get through” those first few worrying months of her child’s life, but to make the most of them. To celebrate them. I could respect that. Even admire it. Okay, I envied it. I was NEVER going to have the presence of mind to put together a scrapbook for Quinn, now or ever, and I certainly wasn't capable of creating happy memories worth photographing in this miserable place, so clearly I would be voted off the Good-Mommy-Island way before Belinda. But as jealous as I was of her creativity and fortitude, I also suspected she might be mainlining big vials of denial and developing quite a nasty addiction to the stuff.

Belinda had confided in me that the NICU had accidentally given Camille another mother’s breast milk, and while back in the days of wet-nurses, you might have been grateful for the communal milk sharing program, in the days of AIDS and Ebola, this was tantamount to a major disaster. Besides having to undergo a spinal tap and other not-so-fun-but horribly-painful tests, Camille’s little four pound self was subjected to a two week internal cleansing; every cell in her body was scrubbed raw with a hellish cocktail of antibiotics and antivirals in an effort to prevent any one of the hundreds of diseases she may have acquired from oops, ANOTHER MOTHER’S BREASTMILK. But rather than going stark raving mad as any sane person would do, Belinda, my last good hope for comradeship, switched to formula feedings and then found the gosh-darned silver lining tucked beneath that monstrous black cloud:

“Yeah, but they pay a lot of attention to us now, so that’s good”.

Somehow it hadn’t occurred to Belinda that her daughter was in an INTENSIVE CARE unit, and that “a lot of attention” should be standard issue. Something about this place brought out the dooper in this super-Mom, or maybe she’d just had a little too much of the purple kool-aid, either way, she was going to be of no use to me and my determined efforts to wallow in RE-ality. So, while Belinda was busy scouring ebay for antique French prams for Camille’s grand exit, I was searching high and low for someone who still had some fight left in them.

And then on the fourth day of our all-inclusive stay at the NICU, a new preemie arrived on the scene. The preemiest of all preemies. Now, you should know that there is a certain decorum expected of NICU parents and visitors, one that doesn’t allow for gawking at babies, especially babies who don’t belong to you, but upon passing by this tiniest of creatures, so fresh from the womb, not yet dressed, (except in a makeshift diaper), not yet named, and not yet even resigned to her new status as a breathing being, I couldn’t help but pause for a moment longer than is considered appropriate. Okay, truth is, I stopped dead in my tracks and LINGERED … and depending on who’s telling the story, maybe I let out an audible gasp …or two … but you have to understand, although this 26-week-old neonate weighed less than most of my grandfather’s garden tomatoes and although her miniature bones were still visible through her translucent, wrinkled skin and although she had more tubes and hoses coming out of her than she had limbs and orifices, and although her flailing, squirming, mad-as-hell contortionist self barely looked human under the bright lights of her incubator, I didn’t stop to gawk at her strangeness, I paused to gaze at her beauty. Her sheer will. She seemed to me to be the only other person in the world who was as pissed off as I was. At last, I’d found a kindred spirit. Someone I could call friend. But for reasons that will become clear later, we’ll call her Nadzia from here on out.

For the first three days of her incubated life, Nadzia had no visitors. Unless her parents were bats and only able to visit in the dead of night when no one else could see them, they never even stopped by to take a peek at their beautiful baby girl. Fortunately, the nurses seemed to be paying her a lot of attention, doting on her as they changed her diapers and adjusted her breathing tube, but there was also a lot of whispering happening around her isolette, and even though I am an inveterate eavesdropper, I couldn’t hear enough to understand the content of what was being said, only the tone, and the tone was somber.

I began to make up horrible scenarios in my head, ones that involved whole families being wiped out in tragic car accidents, and long, terrible stints in foster homes for Nadzia. I was beside myself with worry for my new friend’s future, so on that third day of Nadzia’s solitary confinement, I asked my husband, in earnest, if my wild imaginings were indeed true and Nadzia had no family left, if he would be up for adopting her, seeing her through the next few months of NICU life and then bringing her home with us to raise as Quinn’s sister. Rather than looking at me as if I’d just been slipped a mickey, my eternally wise and gracious husband looked at me with tender, knowing eyes and said, “we can talk about it”.

Oh, how I loved my itsy bitsy husband, always willing to give that waterspout one more climb! Finally, the reason for this stopover in nowhere land made sense to me! It wasn’t my “advanced maternal age” or my defective genetic code, or even that second epidural that had landed us here, it was Nadzia! It was divinely ordered, we had to make this pilgrimage and suffer its hardships in order to find her … the NICU suddenly seemed more holy-land than woe-is-me land, and for the first time since my arrival, hope prevailed.

And yes, I know what all of the astute, psychologically sophisticated folks are thinking ... and they’re absolutely right. I was no doubt projecting my worry for my son onto the nearest person who seemed to have it even worse than Quinn. I definitely wasn’t equipped to really accept the fact that my newborn son might die in this strange place -- and maybe I was looking for a worthy distraction, and what better distraction than a one-pound orphan with nothing but lambswool beneath her to keep her warm? But despite that truth, there was another truth that was equally as real to me, and it goes something like this: On his way to a very important meeting, out of the corner of his eye, God caught a glimpse of me fumbling my way around the NICU and when he saw, I mean really witnessed how inept and ill-prepared I was for Life, he didn't chastise me, or coddle me, he simply reached his hand down from the heavens, pulled my shrunken, underdeveloped heart out of my chest, resuscitated it with his own breath, took off its training wheels, gave it a good push and then told it to peddle beyond its reaches! (He may have even stood on the sidelines for a bit, cheering “Go Go Go!” Or “You can do it, I know you can!” I don’t know for certain because I was too busy catching his tail wind.)

I had my marching orders. If I were ever going to love without bounds, then I had to love without bounds. It was as simple as that. And it didn’t mean only loving Quinn without bounds, because that was in and of itself a bound. No, I had to LOVE in a Thirteenth-Century-Sufi-Mystic-Poet-Prescribed kind of way: I had to LOVE, as Rumi says, until I’d gotten free of that ignorant fist that was pinching and twisting my secret self. I had to LOVE until the Universe and the light of the stars came through me. I had to LOVE until I was the crescent moon put up over the gate to the festival! And whether you attribute that inclination to the psyche or the soul, it matters not, because the fact is, the one-pound orphan with nothing but lambswool beneath her to keep her warm was the spark that made me feel infinitely … capable.

It was time to dust off the bootstraps and get to work. I would talk to the nurses, tell them my plan. I would call a lawyer, see what we needed to do to get the adoption papers rolling. In the meantime, I’d ask if we could move Nadzia’s incubator next to Quinn’s so that we could keep an eye on both of them at the same time. I would fill her desolate isolette with the softest, sweetest pink blankies and little stuffed lambs and pictures of her big brother … even Camille would sit up take notice of Nadzia’s new digs. I’d get on ebay, see if the French ever made double prams, surely they did, I’d seen some in old movies … cost was no object … I’d put it on a credit card! And in time, we would make the grandest exit of all from this holy land, bidding adieu to all of the fresh-breath doctors and attentive nurses, maybe even asking the kitchen to whip up a Chinese Chicken Salad to-go …oui, oui, one more for the road, s'il vous plait!

But then, because there’s always a “but then” in stories where people peddle harder downhill than uphill, on the fourth day of Nadzia’s life, a woman showed up, freshly hosed down and dressed in yellow scrubs, eager to hold my soon to be adopted daughter. I should have been relieved, even happy for Nadzia, but that would mean I was a more evolved person than I was, because mostly all I felt was indignant. Who did this woman think she was? Waltzing into Nadzia’s life, three days late and a dollar short? What exactly had she been doing for the past three days that had prevented her from visiting her (my) daughter? Was she really fit to be this child’s mother? Hoping she had a darned good excuse, though I couldn’t for the life of me imagine what it would be, I turned on my supersonic hearing and inched my chair closer to the women hovering over Nadzia’s incubator. At first all I picked up on was a fuzzy lesson on how to hold Nadzia without disrupting the various tubes and wires she was connected to, but then I overheard the nurse telling the woman that no one from Nadzia’s family had been in to visit and that she would be the first person to really hold this baby. Then she thanked her for volunteering. (Volunteering? This woman was a baby-holding volunteer? I could have volunteered! Why hadn’t they told me? Why had they let Nadzia lie there, so alone, if all they needed was a volunteer!?) And then, as the nurse handed Nadzia to the volunteer, she said something in hushed tones, something that was inaudible to me, something that brought the woman to tears as she gracefully scooped up the tiny stranger and held her to her heart.

And in so many ways, I wish I could say the story ended there.

But, as the days marched on, one by one, Nadzia’s extended family began to trickle in. Stuffed animals began appearing in the once barren isolette. Knitted blankets replaced the hospital’s blue and pink striped covers. And pictures of pimply-faced teenagers, who had yet to make a live appearance, were taped to the surrounding walls of Nadzia’s incubator. The maternal grandmother was the first to arrive on the scene: a small, shy, blonde woman whose English was so poor that she required a Polish translator for her initial visit. Unfortunately, she was my best hope. While her English was limited, her heart seemed to be fully in tact. I was fairly certain Nadzia could make a life with this woman. She might end up in ESL classes, but I could live with that. The paternal grandmother on the other hand, well, let’s just say, in my not-so-humble opinion, she had her shortcomings, and leave it at that.

The problem with being “a crescent moon put up over the gate to the festival”, is that you have to sit there, shining down on EVERYONE passing through, equally illuminating the pitiful faces along with the beautiful. The cowardly and the brave. The asleep and the awakened. You don’t get to have your favorites. And you don’t get to hold grudges against 72-hour no-show-and-no-hold-your-baby families . You have to know that not everyone who abandons their child is lying dead on the side of the road and you have to keep on shining anyway. You have to throw away your dimmer switch. There is no selective lighting when you’re the moon. You have to know that foolish teenagers do foolish things, foolishly believing that their actions don’t have consequences. Real-live-one-pound-three-ounce consequences with fingernails, eyelashes and souls. You have to stay as still as a moon can stay as the bereft teenaged mother enters, with her narrow, immature hips and tiny gold stars embroidered on the hem of her jeans, and when she gazes at you from a distance, you have to pretend that you are following her, because she still believes you are. You have to have mercy on this crazy world, always trying to put her best foot forward, but never failing to show up to the party with mismatched clothes, smeared lipstick and toilet paper stuck to her shoe, and not just because you're merciful, but because that foolish "she" is YOU. All distinction between "us" and "them" is lost when you're a moon. Which is why it ain't easy. Which is why I recommend signing a short-term, renewable contract.

As fate would have it Quinn and Camille would receive their NICU pink-slips on the same day. Camille had logged 101 days on planet nick-you and Quinn had logged 11. They had both logged lifetimes. Literally. Belinda and Camille would leave first, which seemed appropriate somehow, since they were and had always been our pathmakers on this journey. Belinda would show me pictures of the splendid nursery awaiting Camille, and for a moment, I would wish that I could start all over again and be Belinda’s daughter. Oh, what a life she had laid out for her! If Belinda had anything to say about it, Camille would never want for warmth or succor or love. I would shed a few tears and think that the world was showing off now, revealing just how beautiful she could be with just the right lighting. I would snap a few shots for Belinda as she exited with Camille, photos that would surely complete the coveted scrapbook. And as a parting gift she would hand me a brand new disposable camera ... and so I would bundle up my son in his finest duds, a cream colored knitted onesie that I had hoped to bring him home in all those eleven years (days?) ago ... and I would comb his duckfeather hair ... and I would finally take a picture of Quinn at the NICU. There would be no denying that it had happened. I would say good-bye, one by one to each of the nurses, all of whom I had come to love and deeply respect. I would think that if I had another life, I would want to become a neo-natal nurse. And then I would look up and see the sweet little minister pulling a privacy curtain around Nadzia’s incubator as her Polish grandmother and a solemn Priest took their place beside her.

I won’t lie … I would panic. I wouldn’t understand what the Priest was saying, or why he was talking about “provisions for the journey” and “the shadow of death” when just moments ago I had seen Nadzia’s monitors blinking away. I would wish that I were Catholic so that I could know what it all meant. And I would find a way to slowly pack up the last of Quinn’s belongings so that I could stay with Nadzia for just awhile longer.

When the curtains were pulled open and the Priest bid farewell to Nadzia’s weeping grandmother, a nurse would sit her down and try to comfort her. The grandmother, who couldn’t have been more than forty, and in her newness to this country, seemed a child herself, would begin asking questions in broken English, questions to which, no matter what the language, she could not find a way to wrap her mind around the answers.

Yes, the baby would die.

When, nobody knew.

She had a condition.

No, there was no chance for her.

There were papers to sign.

There would come a time when there would be nothing more the NICU could do.

And then she would need to take her granddaughter home to die.

“Oh, no, I don’t want, I don’t want …”

“But, it will be best for her, to die peacefully, at home”.

“No, no, I no take home, we leave her here, I cannot do, I cannot do.”

And I would whisper to myself, “yes, yes you can” and I would pick up my son and I would make my way to the nearest exit. I wouldn’t need to stick around to know how Nadzia’s story ends, because it ends the way all of our stories end. I would only pause long enough to gaze once more at her beauty, and I would think: We are ever so briefly here ... please, friends, I beg of you ... let the light of the moon and the stars shine through you.

Quinnundrum

2010-02-24T16:44:00.000-05:00

“Show me your face before your parents were born.”

-Zen Koan

I spent the first four years of Quinn’s life feeling like a mud wrestler on meth, wrangling to the ground every slippery fact and fallacy the experts hurled at me - all the while trying desperately to hang on to the one thing I knew to be most true: there is more to my child than meets the unobservant eye.

I unwittingly found myself stepping into the ring when Quinn was about five months old and our Early Intervention team performed their first real developmental assessment. The E.I. Team consisted of a physical therapist, an occupational therapist and a developmental specialist – which, looking back, seems a little unfair since my team consisted of an exhausted mom, a stressed out dad and a gassy, epileptic infant on a class II narcotic for seizure control. The assessment took place in our living room, Quinn squirming on his back, gazing up at all of the clipboards, a tiny bit terrified that maybe the entire world had gone mad.

Despite his underdog status, Quinn made an impressive debut: He turned his head towards the sound of my voice, he reached for a rattle, he made appropriate spontaneous baby sounds, and there was nothing but kind encouragement from the other team, as if they couldn’t believe that Quinn had spent the first few weeks of his life teetering at the edge of death, as if he had defeated the odds and was soon to declare victory over the need for “intervention”. The mood in the room was celebratory, practically lighthearted – but then the developmental specialist (who we’ll call LuLu) put a washcloth over my son’s face, and when Quinn didn’t immediately swipe it away, you could practically hear the gauntlet crash to the ground.

Not fully understanding the solemnity of the moment, my husband and I could not help but laugh as LuLu furiously made notes on her clipboard while Quinn calmly lay beneath the washcloth. Quinn was playing a familiar game and we were pretty sure he was wondering when the hell somebody, anybody was going to pull away the cloth and make funny faces at him. But with just one look, LuLu let us know that this was no laughing matter.

“He thinks you’re playing a game”, I explained, trying to rekindle a bit of the lightheartedness we had all been enjoying just a few moments before.

“Yeah, he likes to put a burp cloth over his face and then we pull it off and do this…” my husband said, demonstrating his best wacky-daddy routine.

“Yeah, he thinks it’s a riot”, I added.

Only Quinn didn’t laugh this time, I assumed he was a little peeved that he’d had to wait so long for funny face to arrive and so he wasn’t in the mood for washcloth games anymore. And really, who could blame him?

“No, look, he thinks it’s hysterical. We do it all the time.”

Okay, maybe I was exaggerating, we didn’t do it ALL the time, but we’d done it enough to know that it was a familiar game and that whatever these experts were interpreting from the washcloth routine was not an accurate reflection of our child’s abilities.

“Here, let me do it again, I’ll show you how much he loves it …”

But when I placed the washcloth over Quinn’s face and swiftly removed it to his favorite rendition of “peek-a-boo” … and again, Quinn didn’t show any joy, LuLu not only gave us a condescending smile, she topped it off with a bona-fide snort. And that’s when things got ugly.

“What’s the big deal about the washcloth?” I asked, biting my lip to keep from shrieking.

“It’s a reflex,” LuLu answered. “And Quinn appears to be missing it.”

“What does that mean?” My husband asked, genuinely curious and concerned.

“It’s not good. Reflexes are how we survive,” she offered with a regretful yet self-satisfied glint in her eye. It was difficult, yes, but it was oh so good to be the boss.

“Survive?” I snorted. I couldn’t help it … it was a reflex.

Was LuLu seriously asking me to believe that my son lacked the capacity to survive …? Hadn’t she read his files … didn’t she know from whence he came?

When Quinn was just six weeks in-utero, I had an ultrasound to confirm my pregnancy, but as soon as the transducer slid across my belly a few times, the OB looked at me with that same regretful, self-satisfied look in her eye and told me my pregnancy wasn’t “viable.” The good news was, the microscopic mass inside of me would soon exit my body of its own accord and I could try again right away. I asked her how she could be so sure, and she admitted there was a slight chance that she could be wrong, but based on the date of my last period, the size of this zygote was too small to indicate a healthy pregnancy. "But if my periods are really irregular, then wouldn’t it be difficult to predict the date of ovulation?" I inquired, with more than bit of hope in my trembling voice. But rather than even attempt to explain to me what it had taken her eight years of med school to master, she simply informed me that there was a test I could take that would confirm - or counter - her assessment. All I had to do was give blood, check a growth hormone level, give blood again 48 hours later, and if that same hormone level had doubled in 48 hours - there was hope, and if it hadn’t doubled, I would need to stock up on some heavy duty maxi-pads for the impending miscarriage.

After my second blood draw, I hounded the hospital switchboard for hours until the doctor finally called me back with the news that my numbers had not doubled. They had tripled.

“What does that mean,” I asked?

“I don’t know,” she murmured, seemingly a little deflated by the admission.

“Is it good?”

“I’ve never seen it before, but I think it’s good,” she allowed, and that was the last I ever spoke to her.

When Quinn was 16 weeks in-utero, a level II ultrasound revealed that I had a “single umbilical artery” – which meant that while most babies were feeding off of their mom through two arteries in their umbilical cord, Quinn only had one from which to draw his sustenance. We would have to closely monitor his growth because he was at a much higher risk for failing to thrive. And closely monitor we did, but even though he was down a feeding tube, Quinn somehow managed to be born weighing in at a whopping 7 pounds and 11 ounces.

And not to put too fine a point on it, LuLu, but let’s not forget that as a newborn he survived two terrifying episodes of status-epilepticus, a neurological emergency that has an alarmingly high mortality rate. Not one, but two. Clearly, this is a kid, who, if nothing else, knows how to survive!

However, I was soon to find out that surviving was not all that.

By the time Quinn was old enough to be walking and talking, and was doing very little of either, I was spending the majority of my time in waiting rooms filling out surveys and questionnaires so that various doctors and experts could tell me what I already knew: my son was delayed. I suppose the surveys were meant to help identify just HOW delayed, but because they were so irrelevant to my day-to-day experience with Quinn, if I answered the questions earnestly and honestly, my son would often come out looking like he possessed the skill set of a tapeworm.

At Quinn’s two year check-up, I sat in the pediatrician’s waiting room, filling out a developmental questionnaire, nearly delirious with fatigue and futility as I asked my child if he could stop crying long enough to identify the butterfly in a row of images. I knew the answer was no, of course, because I couldn’t identify the butterfly in the row of images. The outdated black ink drawings were barely the size of Quinn’s thumbnail and were so distorted from thirty years of mass photocopying that the butterfly looked more like a Rorschach blob than any Lepidoptera.

The truth was I knew that Quinn couldn’t identify a butterfly, even if it were perched on the end of his nose, but how that simple fact could serve as a predictor for my son’s future seemed ludicrous to me. I had spent nearly every waking and non-waking moment with this little person since his birth and while I knew that all of his cylinders might not be firing in a predictable way, I felt certain that they were indeed firing. They were firing when he easily picked out his rice milk from the refrigerator every single time, without fail, even though the carton looked almost identical to my almond milk's. They were firing when I got lost on some curvy country roads that he and his dad drove frequently, and Quinn was able to direct me home by grunting every time I took a wrong turn, and squealing every time I drove past a right turn. They were firing when he somehow recognized his half brother as his the first time they met … and they were firing every time he gently stroked his ailing grandfather’s face with the back of his hand, a gesture he had been taught to mean, “gentle”.

If you spent any real time with Quinn, there was no denying there was a powerful engine inside of him, not a whiff of inertia to his being, but my son was clearly a square peg in a world of round holes and no amount of touting his unique abilities was going to make him capable of identifying simple images. It seemed the monster opponent of standardized tests had me in a Tonga death grip - fighting for air - and Team Quinn was clearly down for the count. He was only just two and I was ready to surrender. Red-faced with anger and shame, I quickly answered “NO … NO HE CAN’T!” to every question and passed the survey to the receptionist on our way into the exam room.

Upon entering, the nurse brusquely asked me to take off Quinn’s clothes and shoes so that she could weigh him, but as soon as I tried he began frantically trying to disentangle himself from my arms. He was making a familiar sound, one that demanded my attention, one that said he had something to show me. (No, he didn’t point yet – but I knew when my son was trying to engage in “shared attention”.) And so I let him wiggle his way out of my arms and onto the floor. He crawled to the nurse’s feet, but I didn’t understand what was so exciting about this particular woman, and because she seemed rather annoyed with our unwillingness to cooperate with the weigh-in, I hurriedly followed Quinn to the floor … and that’s when I understood what all the fuss was about. The nurse’s shoes were the exact same shoes as Quinn’s beloved babysitter’s – a gold Nike swoosh on white leather. Quinn had grabbed a hold of those shoes for dear life and was looking at me with immense pride, as if to tell me that not only could he identify simple images, he could match them.

Unfortunately for Quinn, his little victories didn’t go a long way in quelling the rampant alarm and pessimism we faced whenever we encountered a person with lots of commas and letters after their name. We spent the next year undergoing MRI’s, CAT scans, countless EEG’s and hearing tests, every blood test known to man, and a few too many (because any is too many) stool analyses -- but nothing could explain why my son wasn’t developing typically. He didn’t have any visible brain damage, he wasn’t deaf, he didn’t have cerebral palsy, he didn’t have a single pothole in his entire chromosomal landscape – he did have epilepsy, but apparently so did Aristotle, Napoleon, and Michelangelo- and it simply wasn’t enough to explain, why, at three years of age, he couldn’t form single intelligible words, couldn’t run or jump, couldn’t properly Velcro his shoes (let alone tie them) and couldn’t help but make copious amounts of friends wherever he wandered.

Quinn was a conundrum. It seemed Mystery, the most infamous wrangler of all, had entered the ring and was baiting us with his fancy moves and flashy bling. So, in one grand stand effort to kick the Unknown where it hurts, Team Quinn joined forces with the experts and filled out the most harrowing QUESTIONNAIRE of QUESTIONNAIRES and put ourselves on a year-long waiting list for a grueling eight-hour assessment with the Developmental Specialists at Children’s Hospital in Boston. Come hell or high water, we were going to find a proper diagnosis for our boy. And not because we would do anything differently once we had one, because we were already addressing every delay and developmental issue that he had. A second mortgage on our house ensured that Quinn spent most of his day engaged in speech therapy, physical therapy, ABA and occupational therapy, cranio-sacral therapy and vision therapy. This was not a kid who was falling through the cracks. This was simply a kid who was missing a label.

“When you label me, you negate me”, Kierkagaard admonished, but by this time, I was battle-weary and unable to heed the warning. Doubt had rooted itself firmly in my being and its weeds were strangling the very marrow out of my maternal intuition. If the neurologist said that Quinn would probably never really talk, what did it matter that I had already memorized and fallen in love with the sound of his future voice? What did it matter that Quinn was so determined to make words that he often sat up in the middle of the night practicing his consonants in his sleep. “P p p ...b b b ... t t t”. What did it matter that he had always found a way over or under or through every hurdle that had ever been placed before him? It didn't matter because Hope had called in all its bets. I was bereft of vision and unable to see my child any other way than through the glass, darkly.

But before our year-long wait to see the big wigs in Boston was up, Quinn outmaneuvered us all and unleashed his inner Buddha.

We had made a trek to Virginia to pay a final visit to my uncle who was dying of pancreatic cancer. My uncle’s house was overflowing with family, all of whom had come to say goodbye, but none of who could quite screw up the courage to do so. Mostly we sat on the back porch, watching about a dozen children do what children do: laugh and play and bicker and whine. It was a warm, summer day, perfect for being out of doors, but my uncle was more comfortable inside, parked in his lazy-boy, watching a baseball game. I imagine it was exhausting (and perhaps too painful) to be around so much youthful energy, which was probably just as well, since the children seemed to be a little on edge in his presence. Perhaps it was his pallor that was worrisome, or the fact that he smelled like lemons (he ate bags and bags of lemon drops to take the "chemo" taste out of his mouth), or maybe the kids had been instructed not to pester their shrinking uncle. Whatever the reason, all of the children kept a respectable distance, all of the children, except, of course, for Quinn.

Much of my family had not seen Quinn for quite some time and the adults and children alike were eager to get their hands on him, but it was clear he didn’t want anything to do with the twenty-five or so odd guests at my uncle’s house, he was there to see the guest of honor, a man he'd only ever met once nearly three years prior. Bypassing a yard full of children and toys, a table full of food and a house bustling with loving aunties, Quinn sidled up to my uncle, stroked his troubled, hollow face with the back of his hand (his sign for “gentle”) and then refused to budge. When I asked my uncle if Quinn was bothering him, he offered a husky, “naw, he’s alright” and the two sat together for what seemed like hours.

At the time I was eager (desperate) for Quinn to be playing in the yard, like a typical kid. Even my cousin’s not so typical, but very special daughter with Down Syndrome was having the time of her life playing whiffle ball - she wasn’t holed up inside, letting her youth pass her by! After a good long while, I demanded my husband retrieve Quinn from my uncle’s lap and bring him outside for a hotdog and some good old-fashioned fun in the sun. Quinn was reluctant to join us, but we promised that after he ate, he could go back inside. But after taking a few bites of his hotdog, Quinn got up and began to walk towards the whiffle ball game. He was headed towards his second cousin, Stuart, who was several years older and one sweet child; I was sure Stuart would give him a chance to play, but my husband and I followed along, to help smooth the transition for everyone. Only there was no need to ask the kids to give Quinn a turn with the ball, because our determined little son walked right past Stuart and headed towards the back of the yard instead.

“Where are you going, Quinn, there’s nothing back there to play with, honey, all the kids are over here …”

But Quinn trudged along with great purpose until he came upon a huge, beautiful old oak tree, stroked it a few times and then spoke his very first sentence, “Hi, tree.”

Now I know in the typical-kid universe, two consecutive words hardly qualifies as a sentence, but in our universe, two distinct words uttered by my practically mute son qualified as a small miracle. Dumbfounded, my husband and I looked at each other as if to say, “did you just hear what I think I heard?” And then, seemingly just to assure us that we weren’t losing our minds, Quinn said it again, clear as day… “Hi, tree.” And I laughed so hard, I cried.

I cried because mine was a child who comforted the dying and talked to trees … and here I was, wishing he would pick up a whiffle ball, a horseshoe or even a game boy -wishing he’d do something – anything ordinary, when Quinn wasn’t capable of being ordinary - because he was far too busy being extraordinary. I cried for the humbling fall I had just taken before Mystery, my beloved friend I’d mistaken for foe. I cried for the three and half years I had already lost gazing up at clipboards. I cried for all of the people who had ever encountered my child and had seen him as lacking. And I cried because I knew that this momentary lifting of the veil would not last. That soon I’d go back to being lost amongst the lost, a shipwrecked fool who had lost her orientation to the horizon: to truth, to hope, to wellsprings and wholeness.

Sidewalking

2010-01-28T13:57:00.001-05:00

“There is no certainty; there is only adventure. Even stars explode.” – Roberto Assagioli

During Quinn’s first therapeutic horseback riding session, I got to be a sidewalker, which meant I was one of two people responsible for holding on to a special belt fastened to his waist to help keep him upright and positioned correctly on his beautiful, Icelandic horse – or put more simply: I got to be the one to make darn sure he didn’t fall off and hurt himself. (No head injuries today, not on my watch, thank you very much.)

During Quinn’s second session, I was encouraged to walk by his side, always within view, but the actual safety duties of sidewalking were left to Esther and Liz, two wonderful, very experienced volunteers at the horse-farm. Quinn and I both survived, although every ten seconds or so Quinn would call out, “Mama!”, sort of like Piglet saying “Pooh” - for no other reason than to be sure of his existence. “Yes, Quinn, I’m right here!” I’d respond, confirming my existence, and at the same time probably revealing more than a hint of my own separation-anxiety.

During the third session, I was given the option of tagging along while the trained professionals took my boy for a walk on one of their trails or of staying behind in the tack room with an enormous tray of pastries set out to make the long wait for your child’s return palatable.

As much as I love a good Danish - or three, I opted to tag along. Well, I guess I did more than tag along, because “tag” implies following. As in walking behind. And while I intended to tag along, I ended up horning in on Beth-the-amazing-riding-instructor’s space, walking through muddy ditches and sharp brambly bushes in an effort to never leave the horse’s (read: Quinn’s) side.

During the fourth session, I was gently reminded that it would be great if Quinn could get comfortable on the horse without the need of my constant presence. I could watch, but I would need to STEP AWAY FROM THE HORSE. When I tried to protest, even Quinn’s Icelandic mare gave me the stink-eye. As you might have already guessed, this was not the first time in Quinn’s four years on earth that I’d been encouraged to give him just a wee bit more space.

In the world of typical children this phenomenon is known as “helicopter parenting” - a hovering mother unable to let her baby cross the monkey bars without a bed of feathers laid out below. But in the world of special needs children, this phenomenon might more aptly be called, PTSP (post traumatic stress parenting). Now, I’m not a big proponent of comparing relatively mild emotional stresses to the kind of trauma soldiers face in war, but (and I’m not mentioning any names) if you have ever left your child in the care of trained professionals, say, in a neo-natal intensive care unit, only to return to find your child in the throes of status-epilepticus, a life threatening condition in which the brain is in a state of persistent seizures, which was most likely caused by a trained professional’s eight hour delay in the administration of critical medication - then you know why I use such serious terminology. Watching your child tumble into darkness, seeing just how tenuous their tether to this world, and knowing that the difference between life and death might truly rest on how closely you monitor their every moment… well that might not be an invitation to the Post-Traumatic-Stress big leagues, but it guarantees a good long run in the minors.

The simple truth is: the professionals don’t always get it right, and while I know they mean well, and I respect their training, and I’m grateful for the services they provide, it only takes one perilous blunder on their watch to dismantle a mama’s delicate sense of trust. The PTSP rulebook says it is not only folly to trust others, but negligence … a rather convenient and not altogether invalid excuse for justifying my maternal hyper-vigilance to family, friends, horses.

However, in my saner moments (though they are few and far between), a more acute and radical truth takes hold, a truth so true we’ve lost sight of its profundity and turned it into a sound bite, a bumper sticker, a slogan for cotton-blended T-shirts; two little words that would seem to imply chaos, but for me, instill a strange sense of order:

S#!t happens.

Case in point: During her first visit to New York City, my sweet little Oklahoma-born-and-bred mother-in-law was happily chirping along Pearl Street when an un-baked-baking potato came flying out of nowhere, landed slap dab in the middle of her head and knocked her out cold. Her head. Out of all of the heads in gotham. What are the odds? If anyone reading this is a statistician, I would truly like to know. And not because a mild concussion from a stray potato is the craziest thing that can happen to a person; but because it is, as my youngest stepson would say, “so totally random” that it highlights the deepest truth of all: ain’t none of us driving this bus.

And so maybe it really is okay, every once in awhile, to just let go of the steering wheel.

I mean, sure, we should eat our fruits and vegetables, and we should definitely wear our seatbelts, condoms and helmets, we should double tie our laces and hold the knife boy-scout-style when we walk, we should keep the matches on the top shelf and the medication under lock and key, but we should also recognize that the notion that we have any real control is a grand, cosmic ruse. As scary as it is, we should pull the curtain on our trumped up belief that anything in this life is certain, we should sniff out our inner control freak and expose that puffed up little mouse on stilts for what he really is: terribly afraid.

Why? Because sooner or later life will draw its line in the sand, separating all that we can control from all that we cannot and only by finding the courage to cross over into the vast expanse of uncertainty will we be able to experience what it means to be truly alive. There’s terror, sure, when wandering through those mysterious netherlands, but there’s also a deep peace in surrendering to the unruly nature of existence, in knowing and accepting that each and every one of us belongs to Life and Life will have its way with us, flinging potatoes at our heads when we least expect it, but also sending butterflies to brush up against our shoulders when we feel most alone.

This is not to say that I will ever put Quinn on any horse that he’s not ready to mount. And with each new challenge he faces in his life, I will continue to be his sidewalker until I’m given the stink-eye and asked to mosey along, but whenever I can, I will put my PTSP manual on the shelf, I’ll take my hands off the wheel, I’ll step away from the horse and I’ll let my son ride ...

Sleepwalking

2010-01-16T13:15:00.000-05:00

“The danger is not that the soul should doubt whether there is any bread, but that, by a lie, it should persuade itself that it is not hungry.” – Simone Weil

There are days when I am enthralled by the quietude of freshly fallen snow and even more so by the smell of my child’s neck, but more often than not, I am no more capable of bringing full presence to any given moment than I am of landing a spiraling jet plane on an iceberg. I don’t know why it is so difficult to just BE … to be wholly present, to have all senses attuned, to feel the true aliveness of my being, I only know that my resistance runs deep.

But the stories and images coming out of Haiti have had me living life at full-tilt these past few days: my shower this morning felt like a visit to a sacred waterfall, dinner with friends last night, a holy repast, and if I try to sniff Quinn’s neck one more time he may report me to social services. But why does it take such a devastating, immediate reminder of the fragility of life to slap the sleepwalker fully awake?

I don’t want to sleepwalk my way through life, but without a concerted effort to stay present, my subconscious somehow slips into the human default position of “As Soon As/Then”. As soon as I shave my legs, then I’ll take a look at the moon. As soon as I change that light-bulb, then I’ll memorize the color of Quinn’s eyes. As soon as I get that tooth pulled, then I’ll speak what’s in my heart.

I’ve frittered away huge portions of my life “winding my watch on the way to the gallows”; so preoccupied with activities designed to distract that I’ve lost sight of my mortality, and in doing so, have lost sight of the preciousness of life. My soul calls out, desperate to remind me, but inevitably gets put on hold, forced to listen to 1980’s muzak while the sleepwalker jabbers away on the other line. At the end of the day, I usually have somewhere around 2,973 voicemail messages from my pesky little spirit, but I go to bed thinking, “As Soon As I get some sleep, Then I’ll call her back”.

And then an earthquake hits or a diagnosis is made or the car runs off the road and I’m shaken out of my torpor. Life hits the big screen again, in Technicolor, and I vow not to miss another single minute of it.

I start by checking all 2,973 of my soul’s messages and find each one saying the same simple thing, “I’m hungry”. I step outside on this cold winter’s night and look at the moon and let my mind dogpaddle its way across the mystery of the heavens, I send prayers and money to Haiti, I memorize the placement of every fleck of gold in Quinn’s deep brown eyes, I speak what’s in my heart, I send more money and more prayers and then sneak in one last sniff of my son’s soft, sweet neck.

Top Five Personal Lessons of 2009

2010-01-03T14:20:00.000-05:00

Top Five Personal Lessons of 2009

1. Unless that still small voice inside is telling me I’m the reincarnation of Eleanor of Aquitaine, I can trust it knows more than any of my big, loud voices.

2. My life has been one long cycle of remembering and forgetting. Remembering our time here is fleeting, forgetting the same. I remembered to remember a little more this year and ended up eating a bit more chocolate than is probably healthy, but I also lived and loved a little more deeply.

3. Whatever we’re not willing to confront, controls us. The more monsters I wrestle out from under my bed, the better I sleep.

4. If we’re lucky enough to make it to adulthood, none of us will leave this earth without a good-old-fashioned-back-breaking-slip on a banana peel, a major heartbreak, and an unbearable loss. The question is not whether we will have to withstand these things, but rather, will we have to do it alone? It is the doing it alone that is truly unbearable … Real Friendship Is Everything.

5. I no longer have time to be in a hurry.

Stoppage

2009-12-04T11:08:00.003-05:00

“We read the world wrong and then say that it deceives us” - Rabindranath Tagore

Quinn never slept more than two to three hours at a time for the first three years of life, and because the threat of seizures dictated we co-sleep, he never learned how to “self-soothe” through the wee hours of the night. Instead, Quinn learned he could wake me up, hour after hour, with a Viking’s attack on my breast and I would happily serve as his human binky, IF, in return, he'd do me the biggest favor of my life and JUST … GO BACK…TO SLEEP….

I know, I know … we’d read all the books, we had early interventionists visiting weekly who “tisked tisked” and warned that we were headed for trouble with such a system, but no other system seemed to work, and we were hamstrung by the very real fear of upsetting Quinn’s neurological apple cart.

However, after the first year and a half of no REM, it was my neurological apple cart that fell over. I began having mild panic attacks at night. The doctor put me on Zoloft. Afterwards, I slept better when I slept, but a few months later, migraines set in. Blinding, incapacitating headaches that maybe a nap would cure, but how do you sleep when your baby sleeps if your baby never sleeps? The doctor added Topomax to my regimen. Not exactly how I wanted to experience the first few years of motherhood– all drugged up with nowhere to go.

Another year of no deep sleep and my body staged a full-out revolt. My immune system decided to go on strike and a little cough turned into a three-month battle with bronchitis. I was told that if I didn’t consciously take a deep breath every ten minutes, I was at risk of losing part of my lung. I dropped a few dress sizes, probably the result of the Topomax and the stress, which some might say, so what, who cares how you get there, ain’t it grand to be a waif? Maybe, but the drug also made me as alert as a bag of rocks, so I couldn’t enjoy my new litheness because I was far too busy trying to piece together a full sentence or trying to remember why I had pulled into the parking lot of the grocery store on any given day.

When I began to boycott all of my black clothes and started dressing in nothing but pink, I knew I’d stepped off the cliff of sanity and was soon to land in the not so distant land of nut-so. Not that I have anything against pink, but I wasn’t choosing to wear it because it flattered my skin tone, but rather because it turns out, black dye contains tannins (who knew?) and every time I wore black my skin broke out in horrible rashes in reaction to the chemicals. And it wasn’t just tannins, I could be grounded for hours by the smell of bleach, or new rugs or scented lotion or even dirty diapers.

Clearly I was cracking under the pressure of trying to care for my sleepless, epileptic son. Surprisingly, the doctor didn’t have a drug for that. She just said, “you have to change your lifestyle, otherwise you’re going to launch yourself into a full-blown autoimmune disorder that won’t allow for you to care for your son at all … is that what you want?”

As if.

Of course I didn’t want to be incapacitated by an autoimmune disease! Of course I wanted to be a fully functioning human being who could care for my son! Didn’t she know my biggest fear was that I would die in a fiery car crash and then who on earth would pick up the slack and tend to this colicky, hungry little insomniac? I didn’t know how, in a few short years, I had gone from the hardy soul my dear friend says she would choose to “man” her wagon train out west, to the leper in the ditch, too preoccupied with scabs to get it together to set out for gold … but I can tell you this, it had nothing to do with what I wanted or didn’t want!

Or did it?

Though the doctor probably hadn’t meant it literally, looking back, I see that the question was not all that far-fetched. Maybe I didn’t want to care for my son, because maybe I didn’t really want “this” child. Maybe I wanted the child who slept and occasionally took a bottle, the one who could coo and crawl and laugh on cue - at least at all of my jokes. This rather bizarre, but oh so human need to cling to my own pre-scripted story - the one with the perfect beginning, middle and end, complete with bouncing baby boy - had left me bereft and bewildered at my co-writer’s new plot twist. Not that I would have ever said any of this aloud to another human being, because I also have a fear of being dragged through the public square and stoned to death, but clearly the cosmic waiter had made a mistake and brought me the wrong dish, and while I was too polite to complain, I was resenting having to swallow bite after bite of somebody else’s idea of a meal. And if the resentment wasn’t making me sick, the guilt most certainly was.

Don’t get me wrong, I loved Quinn dearly and desperately then. My heart ached with so much tenderness for his little being that I felt like I’d been turned inside out and unfurled to the limits of my loving. And while I was exhausted in those wee hours, I had also never experienced more joy than in the softly lit, quiet moments just before Quinn would drift off, his index finger gently “plugging in” to my belly button as we fell together, back into the shadowless land of sleep. He was my boy and I was his Mama … and somewhere in that equation lingered something larger than the both of us. I knew it, deep down, but I just couldn’t seem to catch hold of a truth like that; I was too busy reeling at the idea that not only did God have a bunch of short straws in his big fist, but that I’d had the misfortune to draw one.

My friends rallied around me and hooked me up with a nutritionist, an acupuncturist and the most gifted massage therapist who has ever lived. It was time to get back on track. Gradually, my body began to heal, but my spirit couldn’t fathom gradual. It was still operating on some ancient system, the one that melts glaciers and realigns tectonic plates, so in the interim, before I could synchronize corporal and spiritual time clocks, I attached a whole new meaning to my regained health: I would have another child!

And this time, I would do it right. I would eat nothing but organically grown kale and mercury-free fish. I would do yoga every day. I would visualize a perfectly healthy baby and voilà, manifest one out of thin air. I would beat God at his own game. There’d be nothing but long straws for me from here on out!

Soon after I hit 39 and felt my eggs gasping for air in the shriveling caves of my ovaries, I knew the time was now or never. Quinn hadn’t had a seizure in nearly a year and a half, which was a strong indication that he’d outgrown them, and now that he was weaned, I had passed night duty off to my husband and had caught a few restorative z’s. I’d also successfully weaned myself off all my medication, which meant it was time to unearth my stretchy pants and get down to business.

But the maternity clothes remained tucked away in their plastic tub, along with all of the toys Quinn never played with as a baby. I longed for another child, but something in me was resisting moving forward with the plan. I couldn’t figure it out, I thought maybe I was still holding on to the fear that we’d have another special needs kid and that I’d fall down the rabbit hole again, this time never to return. Or maybe I was still so focused on helping Quinn through his delays in development, that I didn’t know how I’d have anything left to give to a healthy newborn, who, I was pretty sure, despite robustness, would still have needs.

Neither really felt right or true, so it seemed, whatever this stoppage was, it must not belong to me. And then, like a ripe piece of fruit, the mysterious hair-clump was plucked from the cosmic drainpipe with a single twist of fate.

While we were visiting my parents in Virginia, Quinn had his worst grand-mal seizure since he was a newborn. The unconscious, violent-jerking, lips-turning- blue-kind. But it wasn’t the horrible vision of my three and a half year-old’s seizure that put a halt to my desire to further procreate, but instead, the intense feeling of peace I felt holding him afterwards. Actually, it was more than a feeling, it was an experience… well, actually, it was more than an experience, and if you promise not to call in the little men in white coats, I can tell you what it really was …. It was an entity. I didn’t see bright lights or hear voices, but I felt a presence as surely as I felt my son’s sweet body resting against my own. As if Grace itself had entered through the back door of my parents’ house and stood there before me in full regalia, tipping its hat in salutation ... and then wrapping itself around my son and me, transfiguring our desolation into crystalline knowing.

All this time I had been holding myself hostage from the absolute joy of loving what is. Tossing my script into the shredder marked, "Meaningless Tripe" I now had two hands free to fully embrace my imperfect, perfect life; to finally catch hold of the truth beyond truth: I did want this child. I had always wanted this child. I wanted nothing else but to love this child. Quinn was my boy and I was his Mama and that was that.

WWBD Part II or What a Difference a Year Makes

2009-11-25T12:09:00.000-05:00

WWBD?

2009-11-24T16:05:00.000-05:00

“God breaks the heart again and again and again until it stays open.”

--Hazrat Eneat Khan, Sufi Master

It’s a perfect summer day and we decide to make an impromptu visit to a friend’s farmstand in the rolling hills of the Berkshire mountains. We only live twenty minutes away, but our friends Matty and Kyra have just recently returned to their family farm after a three-year stint in California, so this will be their first time meeting Quinn without a breast in his mouth.

As we hop out of the car, eager to introduce Quinn to all of the wonders of a farm, Kyra and Matty’s four-year old daughter, Annadelia, comes bounding towards us, proudly clutching something in her hands.

“Look Mama, I caught a frog and I didn’t even kill it!”

Annadelia was just learning to walk the last I saw her, but now she is a silken-haired colt, running barefoot over rocky soil, her entire miniature being lit with joy. Revealing her prized pet, Annadelia tells her mom all about the mud holes she’s been exploring in search of “hoppers”. Kyra responds with wide-eyed delight, but it’s clear that this wondrous exchange between mother and child is as commonplace to them as the smell of sweltering collard greens … and without a moment’s warning, the sheer simplicity of it shreds my heart into a thousand tiny pieces.

I do my best to hold back the tears, but I am besieged with wanting. Wanting such ease and delight in the world, and not just for Quinn, but for myself. Just a few moments, even, of connecting with the world and each other without first having to construct a bridge with toothpicks and glue.

Annadelia gingerly tries to hand me her frog and the second arrow strikes. I don’t just want. I envy. I covet. I turn away, frantically asking myself, “what would Buddha do?” I’m drawing a blank and there are no answers forthcoming from Master B. I suppose he has more important business to attend to, like Tibet and stuff. But this is easy, right, this is like Dharma 101 material, just THINK: what would the jolly fat man do?

I realize I can’t answer the question because I’m preoccupied by the fact that Quinn is standing next to a horse for the first time in his life and he doesn’t even seem to notice its presence. Instead, he’s studying his hands like they’re ancient texts containing all the secrets of the universe.

Forget about ancient secrets, what about that horse! What is wrong with my beautiful boy? Why doesn’t he care about that huge and magnificent creature standing beside him? Is he afraid of it and trying to pretend it doesn’t exist? Or maybe, he’s not able to see it? Good Lord, I need to call that vision therapist as soon as we get home, which can’t be soon enough.

“Quinn, do you see the horse,” I wheedle?

He continues to look at his hands as if neither the mommy nor the horse exist. I feel myself growing hot with panic … I’ve clearly been in denial, my quirky little boy is never going to “catch up” with the other children, because he is a stranger to this world and he doesn’t know how to enter it.

I bend down, look him in the eyes and plead, “look at the horse, Quinn, look, a horsey, so beautiful … PLEASE QUINN, LOOK!”

There is a clear desperation in my voice and Quinn hears it. He turns away from me and repeatedly says one of his five understandable words, “go”. “Go … go … go, go, go, go, go”. I can’t make him stop, once he gets fixed on a word or behavior, it has to run its course.

Go, go, go …GO, he’s starting to cry and I feel my bad-mommy sensor short out and now the snarly bitch that lurks beneath the sacred bridge I’ve built between my son and myself is free to roam. I’ve dealt with this free-loading fiend before, she considers herself quite the expert on everything that’s wrong with me and my life, eats nothing but scraps of fear and pain, and lives for time in the spotlight. I’m on constant patrol for her appearance, but mostly when I see her slithering up the trestle, I make a break for it, ducking my head for cover when she hurls her sticks and stones. But occasionally, she catches me unawares and knocks the breath right out of me.

“We are not going until you look at the horse, we came all the way to Matty and Kyra’s farm and you need to look at their horse.”

Quinn begins banging his head on the car door, repeating his mantra, “go, go, go”, and my urge is to scoop him up and say, “FINE, we’ll GO", and then throw him in the car and never return to see Matty and Kyra and their most perfect little daughter ever again! But just before I pull out the coat hangers and really let my bad-mommy run wild, I see the freshly banged welts on my son’s forehead and hear the Buddha banging his gong: “It’s the resistance that causes the pain, grasshopper.”

Apparently Buddha has returned from his lunch break. He may be enlightened but he’s not above making a dramatic entrance.

What would Buddha Do?

Buddha would invite the snarly bitch in for a brewski, okay maybe just for tea, but he would never let her take over his house. He would kindly remind the troll that she’s a mere visitor, just like those other little thieves: Envy, Shame and Despair. He’d invite the whole crowd of sorrows in, treat them with respect, and in doing so, take away their power. He’d sit quietly while they growled at him, politely asking them to hold hands and say grace before settling down to dinner. He’d ask them what housewarming gifts they had brought, and if they refused to show their offerings, he’d pull them, one by one, from behind their ears, making magic out of mayhem. But he’s Buddha, and I’m just me … a fried and frayed around the edges Mom of a struggling child. What could I do?

I suppose I could admire Annadelia’s iridescent little hopper, I could even admire Annadelia, in all of her glorious innocence and wonder. I could let the horse stray. I could dive headlong into the mystery of my son’s hands. I could rejoice in this life I was given. I could remember the holiness in each and every one of us. I could let my tears fall into the red clay of Matty and Kyra’s farm while I scoop up my child and take him to see a field of rising corn.

When the Bird and The Book Disagree

2009-11-16T12:46:00.000-05:00

"When the bird and the book disagree, always believe the bird." -- John James Audobon

When my son was 20 months old I was told his chin was recessive, (micrognathia), the lid of his left eye a bit droopy (ptosis), and his pinky fingers unusually curved, (fifth finger clinodactyly) and those were just some of the most obvious differences. He was, according to the doctors, "mildly dysmorphic" (a little funny-looking).

Now, I’ve been called plenty of unflattering names in my lifetime, “chicken legs” and “pimple head” being some of the kinder epithets, but I survived my adolescence by clinging to my grandmother’s words, “pretty is as pretty does”. I knew that people who took pleasure from being cruel were going to have an ugliness all their own to wrestle with and I figured I had a better shot at conquering acne than they did of overcoming a mean spirit. So, whenever callous words were thrown in my direction, I would hold my oily head up high and let them slide right off of me.

But what do you do when someone dissects every inch of your beautiful boy and comes to the conclusion that he is so far less than perfect that not only will he never win any beautiful baby contests, but he more than likely has a genetic syndrome that will render him mute or paralyzed or dead by the time he is a teenager? You draw blood, and not from a swift whack to the geneticist’s fat head, but from your son’s tiny veins … and you hope to God their wrong.

The thing about genetic tests is that they take forever. Six to eight weeks turnaround time, if you have an efficient lab. The other thing is that they’re pretty darn accurate, so once you commit to finding out, you have to be prepared to accept the results as fact. I’ve never been very good at waiting for bad news, so I decided to put my nervous energy to use by scouring the internet for information about genetic syndromes. As if becoming an expert on devastating diagnoses would somehow make it easier to receive one.

Do yourself a favor, especially if you are of childbearing years, and NEVER, and I mean NEVER, google “genetic syndromes”. Unless you’re up for a string of sleepless nights, a severe weight loss and an intensive course in questioning everything you thought to be true about life.

All this time I thought life was mine to be lived. A gift, sure, but my gift. I knew I had a limited number of years to do with it what I might, but I believed I could bend it at my will, make it do my bidding. But just one google image search of 22q11 deletion syndrome and I knew I had it all wrong. Looking into the eyes of hundreds of children struggling under the weight of physical disabilities and the truth came into dazzling focus: Life is not ours to be lived. It is living through us, regardless of the cleft in our palate or the curve in our pinky. A heart defect does nothing to impede the life energy flowing through that heart. Life is a force, not a thorough accounting of every microscopic piece of genetic material that makes up our form.

Defining our life by our physical form is like trying to drink the ocean through a straw. We are too vast for such pointless endeavors. Despite the chinks in our armor, and we all have them, we are limitless, incalculable, infinite.

The doctor’s may say differently. But I’ma believe the bird.

Here I Am!

2009-11-10T09:14:00.000-05:00

Quinn recently had a grand mal seizure in his sleep. It was his first in 17 months and up to that point, things were feeling really hopeful; we were already looking towards the horizon of the not too distant future when the neurologist would declare that our boy had outgrown his seizures and that we were free to exit the world of epilepsy.

As if making it to the medically-requisite “2 years seizure-free” mark would mean we’d hit some sort of reverse lottery. Cha-ching! Ching-Cha! You’ve lost your epilepsy diagnosis! We have no door prizes for you, folks, but you can leave the EEG electrodes at the door on your way out. And your worries … and your hyper-vigilance, and maybe even your unspoken reservations about the future. As if to believe that Quinn never having another seizure again would render him immune, that life wouldn’t deign to deal him another bum card or ever force his hand: no drug addictions, no divorces, no drownings, no car accidents, no cancers, no heartaches, no wars.

Truth be told, we weren’t just looking towards that horizon, we were stampeding it, charging it with raised fists, demanding the sun rise on all of us, dragging Quinn along, maybe even a little too gruffly by the arm, so blinded by fear that we forgot the simplest truth of all.

Quinn is who Quinn is.

And Quinn will be who Quinn will be: today, tomorrow and two years from now, no matter if he has or hasn’t had another seizure by then.

And no neurologist will ever be able to give me peace of mind where my son is concerned. Not only because neurologists are self-admitted rubes when it comes to seizures, but because it is simply not their domain.

My thought for the day: Peace of mind does not rest in arbitrary deadlines and electroencephalograms. And it certainly doesn’t rest in believing that things must be a certain way in order for life to be good, for life to be whole or for life to be holy.

My peace of mind is right here. In this moment. And in this moment all I see is a beautiful little boy with a colossal life force, one so sure of the purity of his presence in the world that countless times a day, he announces, with utter glee, “here I am!”

When in Doubt, Begin at the Beginning

2009-11-05T13:11:00.005-05:00

"There is nothing as beautiful as the sadness of one who is blind in Granada."

--Spanish Proverb

You haven’t really lived until you’ve sprayed your breast-milk all over the walls and floors of your local Ronald MacDonald House. At least this is what I tell myself when I’m feeling down. And I don’t just mean losing a few lingering drops to the world, like a beatific cow dripping her last morsels into the grass as she watches her satiated calf scurry away. I mean a full-on spray of milk, enough to give the cracking walls a new gleam and the sandpaper sheets and coil-spring mattress a good, solid dousing.

It’s 2:00 a.m., and my four-day old son is (hopefully) sleeping in his incubator at the Neo-Natal Intensive Care Unit two blocks away. It is my first night away from him. Less than 24 hours ago, we were rushed from our small town hospital to the NICU of a larger “city”-hospital because just a few hours before we were to be sent home, Quinn experienced life-threatening grand-mal seizures which took several hours to remit. The doctors have ordered an exhaustive battery of tests, but until they know the cause of the seizures, they won’t offer the slightest reassurance that our son will live. We’re staying at this somewhat run-down Ronald MacDonald House because it’s the closest available room to the hospital and, besides, we don’t plan on spending our time lounging about.

Until our abrupt transfer, I have been breast-feeding Quinn every few hours, mostly with good results. A large, rosy-cheeked nurse has instructed me on the various holds and positions, and Quinn and I have comfortably settled into the football hold. “He’s such a boy,” I muse, already showing preference for anything with the word “ball” in it. I love breastfeeding. I love it like I love the sun and the ocean and old gnarled trees. It’s unexpected, this love I have for holding a suckling creature to my breast. I’m a somewhat shy person, I was that tall, awkward girl in junior high, the one who was tortured by the idea of community showers and adept at finding the darkest corner in the locker room so she could dress and undress without being seen. I still break out in hives whenever I hear the word speculum. Of course, pregnancy, 38 hours of labor and an emergency C-Section have cured me of much of my modesty, but I am wholly unprepared for the complete abandon I feel when I’m nursing my son. I’ve read about the rush of hormones, I know it’s part of evolution, a bonding process that will ensure the survival of my progeny, but when I gleefully whip out my breast the moment my son cries his hungry cry, even when my somewhat reserved father is in the room, it doesn’t feel like hormones driving me, it feels like a volcanic rush of love wiping out everything in its path: modesty, reason, fear . . . everything. The rush might also feel crushing if it didn’t come nicely packaged with a profound sense of well-being; one little mouth wrapped around my milky nipple and I’m suddenly unaware that I’m 25 pounds overweight, have hemorrhoids the size of Houston, and have never been in more pain in all my life. I make new sense of the noble, gaunt-eyed women in my National Geographics, wasting away with hunger as they breastfeed their children, seemingly too tired to care about the flies swarming around their heads. Maybe, just maybe, in nursing their children, those women are themselves being fed, experiencing a supreme connection to the world . . . to love . . . like Buddha sitting under his Bodhi Tree, at peace with all of the sorrow and all of the beauty of all that is.

Whatever it is, hormones, love, the painkillers, I don’t care, I just want to make the feeling last. I make note to self: “upon returning home, call those intimidating women at LaLeche League and tell them you’ve discovered the secret handshake. Ask how to become a card-carrying member. And have lots more suckling children soon.”

I should probably make it clear that the breast-milk incident was not some form of protest, nor was it a vain attempt to garner an NEA grant for a new form of live art. It was, in fact, the result of a simple misunderstanding. I have a breast pump and am supposed to wake myself up every two hours to collect my milk, the milk to go into the hospital’s freezer in hopes that we can feed Quinn with a bottle if he is unable to nurse. I have, however, forgotten the collection containers at the NICU, and by the time I realize this, it is 10:00 o’clock at night. I am bone-tired and a snowstorm has created bitter winds and frightful driving conditions. It’s too late to drive back to the hospital, I rationalize, thinking that I can surely go one night without pumping. I’ll be back by Quinn’s side before sunrise, and if he’s able to be held, I imagine the blaze of joy I’ll have feeding him with a full breast. Besides, after the day I’ve had, I’m convinced the sleep will be better for me than any possibility of “engorgement.” And therein lies the rub. At 10:00 p.m., I don’t yet know what “engorgement” truly means. It’s just a word I’ve read about in my Companion To Breastfeeding book. Amazing what sort of learning curve can take place in a matter of four short hours.

Engorgement, at least in my case, doesn’t just mean breasts filling with milk, until your size B cup has swollen to double D; it also sports a completely uncontrollable mechanism that allows the heavy fruit to rid themselves of the milk, baby or no baby. And that’s where the spray comes in. I wake up confused, dreaming of demonic fire hydrants taking over the world when I realize I’m sopping wet. I peel off my pajamas, weeping, devastated by this startling, and somehow humiliating, reminder that my baby isn’t there to nurse—and that’s when my breasts begin their Jackson Pollock routine. The sheer volume and force of my spillage feels animalistic. I am no longer a human being, I’m nothing more than a spouting nerve of instinct. I want to feed my baby. It’s not a thought, this wanting, it’s all there is of me at the moment. I begin emitting a strange, dark, hollowed-out howl, and the only upside I can see to this little shop of horrors is that I have left a fair-sized puddle of milk for my exhausted husband to slip on when he gets out of his bed to see if I’m “alright.”

“Alright.” I snarl back at him like a possessed parrot. Is he seriously asking me if I’m alright? Doesn’t he know “alright” is a word reserved for a certain subset of human beings, for people who truly care about things like being on time to the movies so they don’t miss the previews, people who root for football teams like they’re performing ancient tribal rituals, people with toddlers who’ve fallen and scraped their knees and Daddy hopes to sway the little guy in the direction of a stiff upper lip with a simple, “you’re alright, buddy.” People so unlike ourselves. How can my husband not know that we’ve crossed the threshold from alright to not alright, never to return again? And that’s when it hits me: he doesn’t know because this is not his experience. He’s still living in the land of alright. I’m completely alone out here. I’m the lone, demonic fire hydrant raging against the world.

I don’t remember much of what happens next. All I know for sure is that I fall down a very dark hole of self-loathing and despair. I am sure that I have done something to cause my son’s seizures. Didn’t I take Benadryl in those first six weeks, before I knew I was pregnant? Surely Benadryl causes brain damage. And there was the fall I took on the ice in my third trimester. I am and always have been klutzy, I should have known better than to go outside that day. And that shiny laptop computer I had to have, the batteries have leaked toxic waste into my reproductive organs. Not to mention my closest friend was killed in a car accident not two weeks ago, and unable to travel to attend the funeral, I have been holding in my grief . . . my poor baby has absorbed the sadness and his little nervous system can’t take it. And let’s not forget the jello. I shouldn’t have asked for seconds in the hospital, but after three days of not eating, it tasted so good. Of course it did, what with all of the neuro-toxic food coloring. If only I’d eaten more broccoli in my lifetime. Then I’d be stronger, better. All of the times I spit my lima beans into my napkin as a child come back to haunt me. Everything “bad” and irresponsible I have ever done looms over me like a nasty bully in the alley of shame. I have done this to myself. And now, to my child. Four days into motherhood and I am a complete failure. God is doing what he thinks best. He is taking my baby away from me. And why shouldn’t he, look at me, I can’t even feed my own son.

My husband seems truly taken aback by my guttural spewing. My adoring, loving, kind, and very wise husband can’t make sense of me. I see myself through his eyes and I hate myself even more. He makes a few tired attempts to comfort me, and in doing so, becomes the enemy. Kindness and comfort are not to be had by a wretch like me. I want to reach for truth, but I’m in a world of funhouse mirrors, and the more I reach, the more distorted I become, and for the first time ever in my life, I truly wish I were dead. And I say it out loud. And I hear myself say it out loud. “I wish I were dead.” Ugliness abounds. I know it is a grave wish, made even more so by the fact that my son is struggling for his tender life, but in that moment, I want to dissolve back into the earth, leaving no trace of my ever having been here. And that’s when it happens. In unleashing my ugliest self, something even more animalistic, more wild, more primitive than this grief rises up in me. Crouching in the darkest recesses of my being is a soul that says, “step aside, sister, I’ll take over from here.” What else is a girl to do—when a beast like that gives a command, you have to listen.

The dirge ceases. Howls turn into silence. My husband looks to me to see if I am still breathing. I feel myself lifted, truly, lifted from my bed and look with compassion at the scene of the crime. Our sad little room, with our single beds worn thin from overuse, the lifeless pillows and the stained walls and my sopping wet pajamas curled up in a ball like a wounded animal. It looks so beautiful to me now, the realness of it all. How many other families have been in this room, plucking thorns from their hearts, walking through walls of fire to get through to the next day and the next and the next? And what strange animal is this, sniffing the ground for us, gathering sticks for shelter and driving us on, the one that guides us over treacherous ledges, paws outstretched, as if to say, “It’s alright, I know the way.” It cannot simply be an instinctual will to live, just as the rush of love for a child cannot be explained away by hormones. We must be more than our biographies, more than our biology, how else can it be that I am able to kiss my husband, glide to the shower, turn on the water, and wash myself clean?

Mama's Got A Brand New Blog!

2009-11-04T14:18:00.000-05:00

“I keep waiting for the day when someone writes a version of Buddhism for the working mom. I think that person should herself be a mother with at least one ADHD child. She should be clinically depressed and have a couch potato for a husband. If she manages to help the child grow into someone with a good marriage and a real profession, I'll buy all of her books. Unfortunately what we keep getting are philosophies created by self-satisfied, introverted, childless, hermits like Tolle.”

- Amazon.com reviewer

The other day I ran across this review for Eckhart Tolle’s “A New Earth”, and while I don’t agree with her take on Tolle, I appreciated that she was interested in reading a frazzled mom’s take on Buddhism.

In full disclosure: I’m not a Buddhist. I don’t even play one on TV. I have had a few, rare “awakened” moments in my life, but I won’t pretend to come close to understanding the eightfold path or the four noble truths or the boundless compassion of the Dalai Lama.

I don’t have a couch potato for a husband, in fact I have an amazing husband, but I DO have one child with Epilepsy and Pervasive Developmental Disorder-Not Otherwise Specified (which is medical speak for "your kid is waaaay atypical, maybe autistic, and royally...um, challenged"). I also have two stepsons, one with ADHD and one with Dyslexia. I don't like to bandy about labels like these, but I'm just sayin', Zen moments don't come easy 'round here.

I do wrestle with depression, and have much of my adult life, though I come out on top more often than not. Whether I’ll help my son grow into someone with a good marriage and a real profession is yet to be seen, but I plan on giving him every opportunity to live a connected, meaningful life, regardless of his marital or professional status.

I find inspiration and relief in Buddhism, Taoism, Judaism (all the isms), Christian mystics, Sufi poets, irreverent playwrights, masterful novelists, sublime composers, fearless bloggers and friends who don’t mind the cat hair on my couch and the unseemly noises my child makes when he is excited. Mostly though, I find inspiration in Quinn himself. Better than any Zen Master for teaching me mindfulness, his very presence in the world has awakened in me new dimensions of joy, loving-kindness, compassion … and we’re always working on that fourth, rather pesky divine abode: equanimity.

I know I don’t exactly fit this reviewer’s criteria, and so she may not buy all of my books, which is okay, since I don’t have any books to sell - but since I need a deadline to get anything done, I’m going to pretend that she is reading my blog, waiting with bated breath for my daily exploration of the ten thousand joys and ten thousand sorrows of this imperfect, ephemeral life. And if anyone else wants to follow along ... I’d be honored.

Namaste.