“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 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, anybodywas 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” … andagain, 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 carton from the refrigerator every single time, without fail, even though it looked almost identical to my almond milk carton. 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 -- so 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 didhave 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 chemical 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 he didn’t want anything to do with the twenty-five or so odd guests at my uncle’s house, he only wanted my uncle, whom he had only ever met once when he was less than a year old. 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 beingextraordinary. 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.
For more on Quinnmama's journey: zenmasterquinn.blogspot.com
