JAMIE’S STORY

Five Pounds of Wisdom

 

It happened on a Sunday. It was a benign April morning, still well before daybreak. I was pillow deep in dreamy oblivion when the phone trilled a quivering ring. I fumbled for the receiver, and managed a throaty, “Hello?”

It was my sister Jenni. Please no! Not again!

“I’m in labor!” she panted, ecstatically. “Get to the hospital!”

It took me a second to interpret the news and muster an unfiltered response. “Thanks for the heart attack. Cross your legs. I’m on my way!”

As I sprang from the bed, I was struck by a magnificent sense of relief. I’d had this peculiar feeling all week that something would happen to prevent Jenni’s long-awaited baby shower. The night before, while adorning my house with plastic baby rattles and hand-tied yellow ribbons, I’d had an eerie thought that today’s party was too good to be true.

Jenni had endured countless years of waiting for a baby, first persuading her husband, then trying, crying and miscarrying. She’d watched me, her younger sister soar through three effortless pregnancies. She’d welcomed each of my children, selflessly hiding the heartbreak of not having her own precious child. I desperately needed her to get her wish. Today, after thirty-seven weeks of pregnancy, the fear of a miscarriage would be over. I was happy to trade her baby shower for three weeks less worry.

I don’t remember getting dressed, finding my car keys, or driving to the hospital. The next thing I knew, I was sprinting through a scarcely lit hospital parking lot, mulling over the shambled party plans. Who would make the cancellation calls to the guests? And what about my eight-year-old, Lucia? What would she do when she woke up to find me gone?

Lucia had assisted me with every detail of her aunt Jenni’s baby shower. Just a few hours earlier, she was delicately coaxing dollops of lemon icing through a pastry bag onto a 4-tiered layer cake. Even after the last of the twenty-nine favor bags was labeled and stuffed, Lucia still had refused to go to bed. Her determined little third-grade hands insisted on cutting and stenciling every peach, mauve, and silver place setting. Eventually, just shy of 1:30 a.m., we both had succumbed to exhaustion, and headed for well-earned slumber. Little did I know how short my night would be.

Despite my drowsy stupor, the ripe anticipation of a new baby propelled me through the hospital doors. A yawning security guard took my I.D. and offered me directions to Jenni’s birthing room. I hardly needed directions inside this hospital. Here I’d given birth to three healthy children. I’d watched my husband, Gianpaolo receive a diagnosis of cancer. I’d cradled my youngest child through many a morphine injection and countless misdiagnoses. I had no problem finding my way through these halls and to my sister.

I arrived at Room LD3. I peeked through a small glass window, knocking gently on the door. The group inside seemed more consumed with the event at hand than with my belated arrival. There was Jenni, bundled in the finest revolting gray hospital garments. Next to her bed stood Alan, the anxious father-to-be. He was chanting encouraging phrases to his wife like “Keep breathing!” and “Hang in there!” I’m not sure what the alternative was.

My mother was next to Jenni, reconfiguring the lumpy pillows behind Jenni’s back. On the far side of the room were two balding men, one tall, one short. They both lacked hair in the same particular spot on their heads. They both wore surgical masks, but were easily recognizable. They looked virtually identical except for the variation in stature. The tall figure was Dr. Wolfe, our family obstetrician. The other one was my father.

I caught Jenni’s eyes, and took that as my cue to join the party. I dashed for a spot beside her on the bed, only to be intercepted by a beefy nurse, who motioned me backward toward the corridor.

Jenni impulsively intervened, still panting. “It’s okay. That’s my sister!”

“Sorry honey,” the nurse said, addressing Jenni, but looking at me. “Only two guests allowed. Your dad can stay since he’s a physician, but you’ll have to wait outside.”

“Actually, the baby’s expecting me.” I rebutted. “He’ll only cooperate if he hears my voice!”

She shook her head, quite unamused. My mom quietly offered me her ticket to Jenni’s bedside, perhaps hoping the nurse would relent. No such luck.

“You can use the chairs in the hallway. That’s what they’re there for!” the nurse retorted, still shooing me outside. I didn’t catch her name, but we’ll call her Drill Sergeant Helga.

My mom’s eyes gestured through the window, still offering to swap places. I declined gratefully, shut the door, and accepted my B-list seating arrangements. To be honest, it wasn’t so bad. I was close enough to witness the event, yet far enough away to avoid some graphic anatomical imagery.

I leaned on the door, happy as a clam with my small glass viewing window. Hours passed with periodic cycles of banter. Jenni would push, frown, and whimper. The others would cheer her on, while looking to Dr. Wolfe for a progress report. Finally, at 7:14 a.m., a head popped out from a dark, cramped birth canal, followed swiftly by a small cuddly body. Dr. Wolfe promptly announced Jenni had given birth to a boy, just as the ultra-sound and her omniscient sister had predicted.

The next minute was filled with congratulatory mumbles. Helga confidently took my new nephew, offering Alan first dibs at the umbilical snipping opportunity. He accepted courteously, and cut the cord while squeamishly looking in the opposite direction.

After a thorough examination, Helga handed the gummy little tot to my sister who was retching into a hopefully-unused bed pan. Alan extended two hesitant arms toward Helga, struggling for the right position to grasp his shiny new baby. Jenni continued her post labor gagging, while my mom held the bedpan under Jenni’s mouth. My dad stood in awe as he welcomed the first born of his own first born into the world. I was dying to barge in and take part in all the delight and regurgitation.

As my eyes moved briskly from happy barfing sister, to elated brother-in-law, to grinning father, and bedpan-holding mother, I noticed that Dr. Wolfe and Helga appeared less jubilant. Nobody else was aware that the medical duo had walked away from the group towards me.

I moved from the window, but remained in hearing range. Helga posed her question to Dr.Wolfe? “Did she have an amnio?”

“No.” He responded quietly. “She has no idea.”

No idea? No idea of what? I waited for more words, but none emerged. I timidly peeked back through the window. Dr. Wolfe and Helga were just inches away from me, looking toward the others. In that instant, I watched two scenes unfolding. There was a family rejoicing in the background, and a doctor and nurse contemplating their next words to my still oblivious family.

So much of the next few hours, days, and weeks are like a blur to me now, but those two minutes outside the door are forever etched in my memory. I was alone for a moment. Alone in my knowledge of something that would change our lives forever. For just a sliver of time, I would experience a completely different reality than that of my family a few steps away.

Dr. Wolfe broke his silence with a whisper to Helga. Among a stream of mumbled medical terms, I caught three words he kept repeating: “Trisomy 21” and “karyotype.”

These terms meant nothing to me back then. But his next words were basic enough to confirm my trepidations.

“The hospital has videos on Down Syndrome.”

That I understood. Perhaps I had an advantage over the rest of my family. A head start. An extra moment to digest. To rationalize. To accept. I would do all of these, but I couldn’t fathom how Jenni and Alan would endure such disillusionment. This was a big one to swallow for newbie parents who’d spent years anticipating the arrival of the perfect baby.

I let Dr. Wolfe break the news before I attempted to face my family. I silently observed the unraveling celebration inside the room, as the two scenes merged in front of my eyes. My sister got the news while she was still retching. It didn’t exactly curtail her gag reflex. Did I mention she’d had a bona fide phobia of throwing up since age four? Let’s just say Jenni confronted many a fear that morning.

I glanced at Alan’s face, now as pallid as the crumpled sheets wrapped around Jenni’s quivering pink feet. And of course, there stood my fortress of a mother, fiercely gripping her hormonal daughter, as if to shield her from the unwelcome words. My father looked to his wife for guidance. My mother motioned toward Alan with her eyes. My father obediently embraced his son in law with unmistakably genuine humanity. That’s when I walked in. I was no longer alone. The truth had permeated evenly throughout the room, although its weight rested most heavily on Jenni and Alan.

Helga sent off the baby boy for diagnostics, and escorted us to an isolated suite. She said her farewells to five very different people than those who had walked in that morning. With no diagnostic test result yet, Jenni and Alan still clung to a wispy slice of hope for a normal son. My father sat beside them on the bed, staring through the wall. He was a million miles away, already considering every medical implication of this chromosomal mishap. My mother and I shared the blue vinyl recliner.  We clung to one another, sobbing, and wiping each other’s tears with any tissue or sleeve that would stem the endless flow of liquid emotion.

I turned to Jenni and Alan. “You can handle it, you know. You’ll get through this. ” But my feeble words were no match for their sturdy wall of self doubt. They looked at me as if I could never understand. How could I?

The years of disappointments they’d endured to bring this child into the world now paled in comparison to what they felt that day. Each of us in that room felt the couple’s pain. Despite the blessing of this new baby, we viewed that day as if it were nothing but a big ugly tragedy. That is who we were back then, a few clueless, broken souls scared senseless of a five pound baby.

A new nurse arrived, with clean baby in arms. There in Room 441 is where I first met my nephew, Jamie. I was hesitant even to look at him. But I did. I had to. I stared down at the tiny wrinkly dark-haired creature that was virtually identical to my own three children the day I’d met each of them. He was irrefutably one of us, as helpless as any brand new human life, screaming for love and protection. So why was I so utterly terrified of him?

Until then, what I knew of Down Syndrome was from a distance. My closest link to it was via Tommy Donovan, my childhood neighbor. The Donovans were a large family with five kids and heaps of aunts, uncles and cousins. Tommy was treated no differently than his four sisters, with equal driveway-shoveling time and trash bag duty. The Donovans were one of those families you deeply admired from afar, but you’d never really want to walk in their shoes for fear you might not handle their load quite so admirably. I pondered if we would be like the Donavans. What if we just weren’t that extraordinary?

My parents raised us with two basic rules; be compassionate, and be useful. I think Jenni and I both fulfilled the fundamentals, but we were polar opposites nonetheless. Jenni was disturbingly punctual. I was predictably late. Jenni held three degrees from prestigious private Universities, coincidentally in a fifty mile radius of home. I was a sucker for any run of the mill institution that flaunted the words “Study Abroad.” Jenni planned her wedding, career, children’s names, and husband’s blood type before she turned seven. I planned my wedding during my second trimester, upon which I discovered my future husband’s blood type.

It was a harsh lesson for Jenni, that despite her diligent planning, fate would have the last word. I, on the other hand, was no novice to life’s unexpected detours. I’d dragged a reluctant Italian husband across the Atlantic, leaving his hard-earned business behind. I’d felt the guilt for his pains of starting over. I’d voluntarily slid down the socioeconomic ladder to start a new life, then boosted myself back up, along with new business, baby, and hubby with cancer. I’d watched our youngest child endure months of pain, after a chain of shattering misdiagnoses. I’d felt the relief that she’d be okay, and, in the process, I’d learned that I would be too, no matter what the outcome. It’s actually an easy decision when you have no choice.

On that day, Jenni and Alan had no choice. Jamie’s vaguely almond shaped eyes, flat smushy nose, and large protuberant tongue all suggested he had Down Syndrome, or Trisomy 21. Only a specific test called a karyotype could diagnose it, confirming or negating the presence of a third copy of chromosome 21. This would take at least two days. Precisely two thousand eight hundred eighty minutes. Jenni and Alan would be counting each one.

By late afternoon, it was time to call my husband and children. I’d already sent a few cryptic texts to Gianpaolo, who’d explained to Lucia about the baby shower, her new cousin Jamie with Down Syndrome, and her broken-hearted aunt and uncle. Lucia answered my call on the first ring. I prayed she wouldn’t be distraught over the news. No child of mine ever had shied away from anyone with a disability. Lucia already volunteered for Service Corps at her school, which meant assisting seven children with special needs each morning and afternoon. Two of these children had Down Syndrome, so Lucia was completely aware of what her cousin had. I stopped crying, and let her speak.

“Mommy! Are you okay?”

“Yes, baby. Just a bit emotional.”

“I’m sorry everyone’s so sad about the Down Syndrome. But, is it okay if I’m still really excited about my new cousin? I just can’t help it. The excitement won’t go away.”

“Of course it’s okay! I’m excited too. Just a bit sad right now for Jenni and Alan.”

“You know, Mommy, they don’t have to be sad about the baby being different. I guess I don’t understand why everyone’s so sad. I’m not! And I’m not taking down the decorations until Jamie gets to see them.”

Those were Lucia’s words verbatim. I wrote them down the moment I hung up, so as never to forget the wisdom of my eight year old sage. Maybe our family was that extraordinary. Lucia certainly was.

Jamie’s diagnosis of Trisomy 21 was confirmed two days later, as was a heart condition which often accompanies Down Syndrome. Unfortunately, he had complete atrioventricular canal defect, and it was a severe case. In lay terms, Jamie was in heart failure.

Jenni and Alan suddenly had to confront the notion that their baby may not survive more than a few years. Although Jamie was a candidate for open heart surgery, there were two glitches. First, Jamie wouldn’t be ready for surgery for three months minimum. Second, there were no guarantees that the surgery would be a permanent fix, or that he’d survive it. Jenni and Alan hit rock bottom that day. They couldn’t bear to be the parents who may bury a child one day. Who could? Three days later, they announced to their extended families that they’d made a decision. They would nurse Jamie through his surgery, and then they’d give him up for adoption, and spare themselves the chance of losing him later on.

To both families, this sounded like the thinking of two delusional monsters. They’d made a choice when there was none to be made. I couldn’t even bring myself to tell my husband or kids. Who on Earth chooses to give away a child because he’s imperfect? Certainly not the sister and brother-in-law I knew. That was the kicker. Jenni was a truly compassionate person, and abandoning her child was completely out of character for her. I knew Alan didn’t want this, but he would support Jenni in any decision she made, no matter how absurd. So, I shut my mouth. Well, kind of.

My mother and I met privately the minute we could find a moment alone. Each of us insisted on adopting Jamie. Realistically, Jamie would fit much more easily with my bustling young family than with my spunky, but aging, parents. My mother finally conceded, on the condition that she would play the role of Supergranny. I still had to consult Gianpaolo, knowing this would forever change our family dynamic. I rehearsed my persuasive speech to him, and decided to deliver it that night after dinner. This couldn’t wait another day.

That evening, after the pasta e fasule was consumed and the last child was tucked in bed, I broke down to my husband. I told him about Jenni and Alan’s decision, and how it would tear my family apart. I began to describe how desperately I needed to raise this baby, and how Jamie would bring true balance to our family. Gianpaolo cut me off, midsentence.

“Basta!” He blurted in deep southern Italian drawl. “We adopt him.”

The rest of the conversation took off in Italian, so I’ll translate it for you: My husband was and is a rock star human being. He got it without my explaining, justifying, or begging. Needless to say, Gianpaolo got lucky that night. To this day, when I want to strangle him for not helping with carpool, or for not offering to wash the dishes until I’m scrubbing the last one, I remind myself of his beautiful instinct for baby Jamie. I remind myself of his true character. Not too shabby for a macho Italian.

Jenni and Alan surprisingly accepted our adoption offer. Although I was relieved, I was deeply disappointed that they hadn’t snapped out of this idiocy. During the next three months, my mother and I visited Jamie every day. We watched Jenni perform all the routine duties expected of a mother. She’d pump the required four daily bags of breast milk. Jamie would drink it from a bottle because his malformed palate could not latch on to her breast, much to her relief. Jenni changed his soiled diapers. She bathed and clothed his tiny body, but she did not for one moment look like a mother. Jenni was completely detached. The minute she finished feeding Jamie, she would hand him to my mother, without a glance in Jamie’s direction. My mother would cradle him, and rock him to sleep as Jenni would look away, unable to stomach the sight of her imperfect, sickly son. It was heartbreaking to see a mother so truly disappointed by her child. And I was looking at two of them.

Jenni and Alan woke each morning, fearful that Jamie wouldn’t see another day. They allied themselves against forming any bond with this irresistible creature. Yet each day that my parents, husband, children, and I got to know Jamie, we fell more in love with him, realizing he was no more flawed than each of us, and just as perfect as anything for which we could have wished. He came out exactly as he was supposed to, with all the most beautiful attributes of humankind, and an extra chromosome to boot. He became the light of our lives.

July finally brought some good news. Jenni had ironically received an award from Johns Hopkins University for a thesis she’d written on Postpartum Depression. There she was, literally drowning in this illness, yet completely unable to recognize it. The other big news was that Jamie was ready for surgery. Alan’s sister flew out for the big day, and a dozen of us accompanied Jamie to Children’s National Medical Center.

Jamie was prepped for surgery, and dressed in a tiny peach gown the size of half a small pillow case. His skin was now a cool gray from heart failure, justifying the risky procedure that lay ahead. Jenni and Alan were allowed a final visit with Jamie before the doors were shut for surgery. They were given a pager which would notify them of each phase of the surgery. It would beep first when the initial incision was made. It would beep again when he was attached to life support machines. It would beep a third time when he was stabilized.

We sat in the waiting area with a quiet family who was there for a shorter outpatient procedure. Our group of twelve recited a myriad of prayers. Between the “Baruch Atah Adonai” and the “Padre, Figlio e Spirito Santo,” the other, perhaps less spiritual family took us for a rather confused bunch. So I threw in a “Namaste” just for kicks. We crossed fingers, paced the halls, and engaged in any superstitious OCD behaviors that may sway the pendulum in Jamie’s favor.

In my head I was humming Tom Petty’s lyrics over and over. “The waiting is the hardest part.” It was indeed. But during that four and a half hour wait, more than just a miracle of modern medicine was taking place. Jenni and Alan clutched each other, showing the first true emotion I had seen from them since the day of Jamie’s entrance into the world. The crippling fear that they had been trying to avoid was now oozing out of them by the bucketful. At one point Jenni got up, reached out, and put both her hands on her head, as if to keep her mind from exploding with agony. It was an unbearable wait. Each time the beeper sounded the couple exhaled with temporary relief.

The third beep never arrived. Instead we received a visit from the surgeon, Dr. J., or as I called him, Dr. Thank-you-for-existing. His news was not good. It was incredibly fantastically tremendously wonderful! Jamie’s septum had been patched, new valves had been ingeniously sculpted, and his tiny but infinitely loving heart was repaired. It would be “good for another forty years or so. The surgery was a complete success! It was better than we could have hoped for!”

The rejoicing began instantaneously. Gianpaolo picked up Daniela and Antonio, our two youngest kids, and spun them in circles. I don’t recall exactly what happened next, but I think it involved lots of jumping and hugging. It was a moment of sheer relief and giddiness. Apparently I attempted to smooch Dr. J., which was really the least I could do. Gianpaolo didn’t think it so necessary, even though it was just on the cheek.

As the day passed, the delighted crowd dwindled, and the emotional parents were accompanied to the recovery area to see their son. Alan returned to walk his mother outside, and I was allowed a brief peek at Jamie. I suited up in blue hygienic mask, gloves, and cap, and entered the unit. Jamie was surrounded by four large machines connected to him by tubes leading to his mouth.

There beside him sat my Jenni, holding his fragile hand, and kissing it through her mask. She was not the Jenni of the last three months. She was changed in a way I’d never seen before that day. Jenni was undeniably a mother. She was my sister again. She was Jamie’s mommy. I knew, in that moment, that I would not be adopting Jamie. He had found his mother, and she had found her way.

Written by Jamie’s favorite Aunt

________________________

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