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Cora Means Heart

Memoirs of a Special Needs Mom



J. A. Busick

Copyright © 2016 J. A. Busick

Cover photo copyright © 2015 Jennifer Busick

Photo editing by Ash Busick

All rights reserved.

ISBN-13: 978-0463940327



This book is dedicated to all of the special needs parents.

We got a lot more than we bargained for.

















Table of Contents



Introduction

A Perfect Baby

Chance Meeting

The Littlest Superhero

The Longest Day

If the Shoe Fits

Wide World of (Adaptive) Sports

A Year in the Life

Hell on Wheels (or, A Funny Thing Happened on the Way to the Basketball Tournament)

Love Caught the Light

Dear Able-Bodied Person: Don’t Help

Cora in the Mountains

Life Among the Vampires

Lily of the Valley

The Great Physician Now is Near

Acknowledgements

Other Books by J. A. Busick

About the Author







Introduction



I didn’t set out to write a memoir about being Cora’s mom. Even as a professional writer, that’s not the sort of thing that crosses your mind when your child is given a devastating diagnosis: Oh, someday I’ll turn this into a memoir. Instead, I wrote about Cora just like I write about many of the other aspects of my life – as it came up, casually, like breathing. I kept my journals and I shared stories with friends and every now and again, I would write something formal for publication.

Eventually, I looked back at all of that material and saw there a story: the story of my life as Cora’s mom. And I thought, “Someone else might benefit from this story.” Maybe people who have never had a special needs or medically fragile or disabled child would benefit, in coming to understand things they didn’t before. Maybe people who also have a special needs or medically fragile or disabled child will benefit, from seeing that they’re not alone in walking this path. Maybe people who are facing a child’s difficult diagnosis will benefit, from seeing that it is possible to take this road and still, along the way, find bright and joyful moments.

So I gathered up these fragments of memory, these words that mark the path behind me, and I put them together in approximately chronological order. And I wrote a few new things, to fill in some blanks in the narrative. Because when this is your life, trust me, there are going to be blanks in the narrative. There are going to be things that get missed and times that you spent in survival mode, accomplishing little else.

Some of these fragments are clean and polished. Some of them are raw, with unbuffed jagged edges. Some of them careen from moment to moment in the way that life does, sometimes, as we are carried along through the rough water of existence. All of them are as honest as I know how to be.

I have been Cora’s mother for thirteen years. And if there is one thing that I have learned that stands out, it is this: the adjectives are of limited use. They help in explaining, sometimes, to outsiders: “This is my special needs child. This is my medically fragile child. This is my disabled child who plays wheelchair basketball.” But inside, in this family, in my heart, these adjectives are not necessary; they get in the way of what I’m doing here. This is my child. This is my child who plays basketball. This is my daughter, Cora. This is my heart.


Jennifer Busick

October, 2016







A Perfect Baby



At my six-week postpartum visit, Dr. Wigginton hands me a small box with a pink lid. Inside is a stainless steel, long-handled baby spoon engraved with my daughter’s name and birth date.

“Thank you,” I say, and then wait, because Dr. Wigginton is looking everywhere except at me, his face pinched with concentration. He is trying, I soon realize, to find the right words; there is something he wants to say.

Finally, he looks at me. “I just . . .” he begins, but it takes two tries. “I just wanted you to have a perfect baby.”

Now I am the one who can’t look him in the eye.

Everyone looks forward to the twenty-week ultrasound – to that first glimpse, grainy and shifting, when the ultrasound tech says things you’ve been waiting so long to hear: “It’s a boy,” or, “See that, she’s sucking her thumb,” or, “Oh, look, toes!”

I took a videotape to my ultrasound so that my husband could see it later. He’d planned to come, but our older daughter woke up with a fever of 102, so we decided to cancel the sitter, and he stayed home instead.

So I was there alone to hear, “Looks like a girl,” and “There’s her heart,” and “Wait right there, I want the doctor to see this.”

I laid on that table for far too long while the doctor and the ultrasound nurse searched and searched, over and over, for what they weren’t seeing, and examined over and over what they were: they couldn’t find my baby girl’s diaphragm, the muscle that supports the organs in the chest. They couldn’t find lung tissue. They did find a small anomaly – Dr. Wigginton called it a cyst – in my baby’s brain.

That’s just not how twenty week ultrasounds are supposed to go.

At home, I looked up diaphragmatic hernias – conditions where the diaphragm doesn’t form properly in the developing fetus. What I found was scary; half to three-quarters of such babies die. Mortality is higher for girls (like mine), for babies with multiple problems (there's that troubling cyst in her brain. . .), and for babies with low birth weights (at one point the doctor moved my due date back three weeks based on her size, and I told them they had to be wrong; she was just small, for some reason).

I also looked up pulmonary agenesis – the condition where one or both lungs fail to form. Bilateral (both sides) pulmonary agenesis is exceedingly rare; there were only 11 recorded cases as of that year. The sources I read called the condition “generally incompatible with life.” Unilateral pulmonary agenesis is still very rare, but more common than bilateral, and usually accompanied by other developmental defects of varying severity. Either is worse than a diaphragmatic hernia. I feared that I would be case number twelve in recorded history of a woman whose baby was born without lungs; that not only would I have to bury my baby, but that I’d also have to spend the next thirty years fending off scientists wanting to study my case.

Friends and relatives offered what support they could, but it wasn’t much. We were on everyone’s prayer list. My grandparents offered us one of their burial plots, should we need it. It was the only concrete thing anyone could do.

The latest imaging technique at that time was the three-dimensional ultrasound. I read articles about these technological wonders that could give you a sepia-toned image of your unborn baby’s face. In larger cities, women could go to the mall and have their baby’s “portrait” imaged for several hundred dollars. In out-of-the-way western Kentucky, the only way I was going to have access to such a wonder was to need it. At 25 weeks, my husband and I traveled out of state to the nearest perinatologist’s office, where I laid for hours on a table and my baby was poked and prodded, measured and examined first by a technician, then by the doctor herself – a youthful, smartly dressed woman whose name was Turnquest-Wells.

Dr. Turnquest-Wells said, "What we're seeing is a neural tube defect, a condition called ‘spina bifida’ -- "

Spina bifida? Not pulmonary agenesis? Not diaphragmatic hernia?

I said, "But she has lungs?"

Dr. Turnquest-Wells seemed taken aback. "Um. . .yes," she said.

"And she has a whole diaphragm?" I asked.

"Uh, well, yes."

"So it's just spina bifida?"

"Ah . . .yeah."

"Oh, thank God!" I said.

Dr. Turnquest-Wells looked at me like I was nuts.

"They had me flat terrified coming in here,” I explained. “They told me my baby had no lungs! They said maybe she had a herniated diaphragm – half of those babies die! But I know people with spina bifida, and they grow up and they have lives, and you just don't know what a relief this is to me!"

"Oh. . . .Okay," she said. She looked carefully at my husband.

I could tell that she was thinking perhaps I didn’t get it; somehow I had missed that my child would be born with a serious birth defect – and spina bifida is certainly serious. It’s a malformation of the spine that causes damage to the spinal nerves, and like any other spinal injury it can result in paraplegia, urinary and bowel control problems, and myriad other chronic health issues. But people with spina bifida usually live, and most have normal intelligence.

When we left, Dr. Turnquest-Wells gave me a sepia-toned portrait, three-quarter view, of my baby with her fist in her mouth. I felt as though a great weight had been lifted from my heart, and a pall had withdrawn from my eyes. I would not have to bury my baby.

We named her “Cora,” after the young woman in James Fenimore Cooper’s novel, The Last of the Mohicans. Our research revealed that Fenimore Cooper coined this name and that before his novel, Cora was not used as a woman’s name. Today, it has fallen out of favor and is considered old-fashioned by most. But my husband and I liked the name, and we bestowed it on our unborn girl.

There were more doctors to see. Cora would have to be born at a specialty medical center far from home, and we chose Indiana University Medical Center in Indianapolis. Cora would need two surgeries shortly after birth; these would be done at adjacent Riley Hospital for Children. Cora’s delivery, by Caesarian section, would be performed by Dr. Lillie Mae Padilla, a small, reassuringly energetic obstetrician and perinatologist whose native language was Spanish.

Dr. Padilla examined me and Cora in another marathon ultrasound session, which we drove through a blizzard to get to. Partway through the exam, Dr. Padilla said, “I hate to keep saying ‘the baby, the baby.’ Does she have a name?”

“Her name is Cora,” I said.

“Heart,” said Dr. Padilla. When I frowned, she said “Cora means ‘heart’ in Spanish. It’s a woman’s nickname, short for ‘Corazon.’”

So we were wrong about Fenimore Cooper coining the name, but right about the name itself. She is Cora, our dear little heart.

Cora was born on May first, May Day. Six weeks later, Dr. Wigginton – the one who first knew my baby had a problem – gave me a commemorative spoon. “I just wanted you to have a perfect baby,” he says.

I think of Cora: Cora, who spent twelve days in neonatal intensive care. Who came through three surgeries in her first two days of life. Who may or may not walk; who may or may not have full control of her bowels. Who may or may not be a doctor, a musician, a bookworm, a dog trainer, or a gardener. Who may be tall or short, pretty or homely, generous or stingy, vivacious or taciturn. It is too soon to know. Just like it would be too soon to know these things with any other baby. Who can say what Cora might do, how she might be?

Later, when Cora is with me, I see my doctor out in public. We walk over to say hello, Cora and I, she with her bright blue eyes and rosebud mouth, I with my heart on my sleeve and in my arms. “I want you to meet someone,” I say, holding her up. “This is Cora. She’s my perfect baby.”


2006








Chance Meeting



“There’s someone I’d like you to meet,” my doctor had said. He was a kind man, awkward with words, but concerned about me and my unborn daughter. The twenty-week ultrasound had uncovered a problem that had been diagnosed as spina bifida. In spina bifida, the spine doesn’t form correctly, leaving the nerves open on the outside of the baby’s developing body. Similar to other spinal cord injuries, it causes problems with nerve function. Children with spina bifida may need to use wheelchairs or to have surgeries for clubbed feet, hydrocephalus, bowel problems, and bladder issues. But I didn’t know much about it, then. I only knew my baby would be born with a major birth defect.

“Karen was my nurse, once,” my doctor continued, “She has a son with spina bifida.”

“All right,” I agreed. It made sense to think that I might want to talk to someone who had been there. I felt like I should want that. Except that I didn’t. I wanted to do research on the internet, and grieve in private.

“I’ll find her number,” he said.

Like many good intentions, it was something we meant to do but never did. I never actually had to stare at ten digits and an unfamiliar name, and screw my courage up to make that call. I was busy. I couldn’t get appropriate care for my daughter in western Kentucky, so I spent a lot of time traveling to Indiana, meeting with perinatologists, neonatologists, developmental pediatricians, and pediatric neurosurgeons.

When I met with the neurosurgeon, I asked about surgery that could close my daughter’s spinal defect in utero – the surgery that spawned the famous photograph of the unborn infant grasping a surgeon’s finger.

He advised against it. “The babies don’t seem to gain significant function, but they are more likely to be born prematurely, which has its own set of problems,” he said. “Risks outweigh benefits right now.”

So I did not opt for the prenatal surgery.

Cora was born by Caesarean section at 38 weeks. She had surgery immediately to close her spine, and surgery the next day to place a ventriculo-peritoneal shunt for hydrocephalus. After eleven days in the NICU, she came home.

I was grateful, in those days, for my older daughter, Ashley Rose – my 3-year-old, blonde-headed, gregarious ray of sunshine. Not because she was my “normal” child, but rather, because having Cora was in many ways like having any other baby. If Cora had come first, I might have thought that Cora fussed in her car seat because her back was scarred or caught so many colds and ear infections because of her shunt, or that she was feeding every two hours because something was wrong with her. Because I’d had Ashley Rose first, I knew that most of the demands Cora made were the demands any ordinary infant would make. Knowing that was a great comfort to me.

At my six-week post-partum checkup, my doctor again mentioned Karen. I cringed inwardly. I didn’t want to have a conversation with a stranger about our children’s medical issues. It wasn’t a form of support I needed. I hoped he wouldn’t find her number. I hoped he would get busy, and forget.

He seemed to do just that. Months passed. I went about life, taking care of my newborn – all of the usual demands, plus early-intervention therapies, medication regimens, extra doctor visits – and her sweet sister.

Carryout meals are one way to manage the increased demands on a new mom; another perfectly normal thing about having a new baby. One afternoon, Ashley Rose and I stopped for carryout. I went to the counter to order. Ashley Rose, three years old and irrepressible, went to sit on the tall spinning bar stools that lined the long, narrow table parallel to the counter.

After I had paid, I went to wait with her. She was sitting next to a woman I didn’t know, having an animated conversation.

“I see you’ve met my daughter,” I said, smiling at my Rose.

“She’s adorable,” the other woman said. “I was just telling her about my son.” She held up her wallet, showing a school photo of a smiling, dark-haired boy. “He’s in a wheelchair. He goes to a special school.”

He’s in a wheelchair. He goes to a special school.

It didn’t necessarily mean anything. Except that… it did. No sooner were the words out of her mouth than I knew something I could not possibly have known.

“You’re Karen,” I said. I was absolutely certain of it. “Your son has spina bifida.”

She startled. “Yes… how did you know?”

“You used to work for my doctor,” I said. “My younger daughter has spina bifida. He kept telling me I needed to meet you.”

“Oh!” she said. “How old is your daughter?”

“Six months,” I said.

“Can I ask you something?” she said, and her face was intense; her expression pained.

Wasn’t that my line? But I went with the flow of the conversation. “Absolutely,” I told her.

“Did you have the fetal surgery?”

It’s a lesson I try to remember now, for myself. When it doesn’t make sense, when I don’t understand: it’s entirely possible that the person who has my answers is coming. Maybe she just hasn’t yet been born.


November 25, 2015







The Littlest Superhero



Look out, world! A brand-new superhero stands ready to confront injustice, right what is wrong, and provide a shining exaggerated example of all that’s best in humanity.

Well, she doesn’t exactly stand yet; she’s only seven months old. And she’s not exactly confronting things; that’s difficult when other people have to move you around all the time. As for righting wrongs, well, that started her very first day on earth.

They say that life is not like the movies – or perhaps, in this case, like the comic books – and in no instance I can think of is that more true than in medicine. When Steve Austin should have died, he was surgically rebuilt as a half-man, half-robot – and his nonhuman parts turned out to have superhuman strength. When Bruce Banner was exposed to gamma radiation, rather than killing him, it turned him into the Incredible Hulk. The X-Men supposedly possess their powers from birth, the result of genetic mutations.

But that’s the movies. In real life, genetic mutations do not confer superpowers. Nonlethal mutations often result in some type of abnormality, limitation, or vulnerability; others are lethal in the relatively short term. Gamma radiation is deadly, and prostheses are always inferior to the parts they replace.

So what can I hope for, then, for my new little superhero? Cora has spina bifida, a congenital condition in which her spine formed improperly, damaging the nerves in her lower back and sacrum, and leaving them exposed on the surface of her back. Because of the deformity of her spine, the system that circulates her cerebrospinal fluid doesn’t work properly; the fluid builds up inside her brain, causing hydrocephalus. The day Cora was born, only 6 pounds 12 ounces, she underwent neurosurgery to close the defect in her spine; the nerve damage, she will deal with all her life.


There is no fix for muscles connected to non-working spinal nerves. There is precious little in the way of effective therapies. Physical therapy can help hold the line on whatever function she has; braces can help to reduce the effect of nonworking or weak muscles. But even Hollywood’s own Superman, Christopher Reeve, could not buy what does not exist: a way to rebuild damaged pathways between the brain and the rest of the body.

When Cora was 24 hours old, a second round of surgery tunneled a small plastic tube, called a shunt, from her brain to her abdomen, to drain the excess fluid. Where the shunt emerged from the right side of her skull, just behind her ear, the small domed reservoir was visible beneath her skin. The tube leading from there into her abdomen was clearly outlined behind her ear, down to where it disappeared somewhere in her neck, then again where it reappeared running along her rib cage until it disappeared at the one-inch scar in her stomach. Less than 48 hours old, she was already the Bionic Baby.

Steve Austin made it look so easy; his mechanical parts worked the way they were supposed to, and never failed. Cora’s team of neurosurgeons came daily to the neonatal intensive care unit to press their fingers into the fontanel, the soft opening in her skull, and pronounced themselves satisfied with the shunt’s function. Cora’s father and I could see no difference; the skin over the diamond-shaped opening was as rounded and full as it had been when she was born.

“Well,” her neurosurgeon said, “a shunt that drains too quickly is as bad as one that drains too slowly. It’s hard to strike that balance. I think she’s okay, though.”

Cora was not okay. She had been home less than a week when I noticed that the tissue around her shunt tube, where it ran just behind her ear, was swollen. I called the hospital, wondering if this was a bad sign. They told me to lay her on her other side, so that the excess fluid could drain. Nothing changed, but they were the experts. It was their bionic implant, and I trusted them to know how it ought to work.

Cora fussed. She slept all night, but only fitfully during the day. She wanted to eat every two hours, but fed poorly. She wouldn’t gain weight quickly enough to suit her doctors. She hated to ride in the car; she would tolerate no clumsy handling and no bumps whatsoever. The drive to my sister’s wedding, six hundred miles away in North Carolina, was slow and excruciating. We came home, and called the hospital again.

They told us to come. Five hours in the car, with a child whose head hurt from too much internal pressure, to the specialty center where the pediatric neurosurgeons tossed out big words like edema and eosinophils that, as nearly as I could determine, meant that Cora’s body was rejecting her life-saving implant. They scheduled her for surgery to place a new shunt the next day. If they noticed that the next day was the Fourth of July, they made no mention of it. They spent their holiday removing the infected shunt, and tunneling a new plastic tube into my two-month-old infant’s brain, and down over the top of her rib cage into her abdomen. The neurosurgeon told me brightly that he’d coiled up a length of tubing in her abdomen that should uncoil as she grew, taking her all the way to adulthood; her bionic implant will grow up with her.

That night I sat with Cora in her hospital room, praying that whatever had been wrong with her shunt had now been made right. My husband took our three-year-old to watch fireworks from the roof of the hospital parking garage while our bionic baby slept.


In practical terms, Cora’s condition has caused her to be developmentally delayed; that’s what it’s called today, anyway. Tomorrow it will be something else, once “developmentally delayed” becomes a pejorative term.

When I was in elementary school, we referred to developmentally delayed children as “retarded.” The word itself simply means slowed – and who wouldn’t be slowed down a little bit by brain surgery, spinal injuries, and a malfunctioning endocrine system – but it came to be said with a roll of the eyes, a twitch of the lip, a distaste that changed it from an adjective to an insult; when our own friends did stupid things, we called them “RE-tards,” – emphasis on that first syllable – not long afterward, it became unacceptable to call anyone “retarded;” instead, kids with significant obstacles to overcome were “handicapped.”

My mother tried to teach me better, of course – but my best teacher was a friend, a girl named Emily who was too tall, too skinny, scarred and awkward, with a raspy voice and soda-bottle glasses, all the result of some childhood medical condition. Mom commented on Emily’s admittedly bizarre appearance, only to be rebuked by me – “Mom! You’re the one who’s always telling me not to judge people by how they look! Emily is beautiful on the inside!”

Like retarded, handicapped is a perfectly legitimate – and accurate – adjective. It has been used in sports for centuries. In horse racing, handicapping is the practice of assigning faster horses a heavier burden to carry, in an attempt to create a closer race. In golf, handicaps allow players of differing abilities to play together competitively. Always, the handicap is given to the stronger player. In Kurt Vonnegut’s short story, “Harrison Bergeron,” the brilliant, beautiful and strong young Harrison is weighted down with handicaps that make him no smarter, lovelier or stronger than anyone else. But eventually, handicapped took on the same negative connotations as retarded. So now we say developmentally delayed, until that becomes an epithet, and we choose another, less freighted euphemism for someone whose burden is greater than most.

There is, of course, the temptation to raise a fist to the sky and cry, “Why me?” Why, God? Other people have perfect babies; other people have charmed lives; what did I do to be cursed with this challenge? But to do so is to frame the question in unworthy and selfish terms; after all, I still have all I ever had – I walk, run, drive, urinate and defecate without difficulty, as my daughter may never do – and I have my child into the bargain; not all parents are so blessed. The question before me, instead, is why her? Why should this girl, this lovely bright-eyed child of mine, face such hardship and endure such trial? Who sinned, God, that she should be born so?

The only answer is what you would expect: she is greater than I. Handicaps are not given to the weak, they are given to the strong, and God, we are told, tempts no one beyond their ability to bear it. If this is so, and if I judge aright that her burden is greater than mine, then she must be greater than I am, to bear it. Will she never walk? She will bear it better than I will. Will she be subject all her life to vampiric modern medicine? Then she has a greater spirit than I do. Here is the answer that God gives back: Cora will know early what I might not learn until late – My strength is sufficient for thee. We cannot rely upon ourselves. We are helpless, small, weak, incapable, needy, dependent … and yet the weakest of us must have the greatest strength.

She is the littlest superhero.


October, 2003







The Longest Day



(Author’s note: most of this text this is a journal entry. I have added an introduction, but I have not edited the journal itself for grammar or punctuation, choosing instead to leave it largely as I wrote it at the time)


Children with spina bifida see a lot of doctors.

Children with spina bifida see a lot of the same doctors, and have a lot of the same tests.

So – in a bid to make life easier for parents and children – most states now have at least one spina bifida clinic, where children with spina bifida (and sometimes, children with cerebral palsy, who also see many of the same specialists) can see most of their specialists and have most of their tests done in one place, on one day.

This is Cora's annual clinic visit.

She’ll have a renal ultrasound, head CT, and visits with the developmental pediatrician and his nurse, the neurologist, the urologist, the orthopedist, the physical therapist, the occupational therapist, and the social worker – an endless parade of medical professionals knocking lightly on the exam room door before they poke and prod at my child. There is a certain convenience to seeing all these specialties in one place at one time – it’s far more convenient in its fashion than going to three different locations on three different days to see the endocrinologist, the pulmonologist, the cardiologist, the geneticist, and oh, Cora's regular pediatrician. But it's also a very long, exhausting day; one that doesn't make room for 2-year-old afternoon snoozes or a well-digested lunch.

Originally, we weren't scheduled to turn up until 11:30, for Cora's renal ultrasound. This was offered as another convenience – the secretary knows I travel a long way from western Kentucky to Riley Hospital for Children in Indianapolis – but when I found on her appointment card that she was supposed to have the ultrasound at 11:30, a head CT at 12:45 and clinic at 1:00, I called and protested. I remember far too well the day that we were kept sitting in a blank hallway outside the ultrasound room, waiting to pick up our results, for so long that we didn't get any lunch. I was sick – head pounding, guts twisting – all five hours of the ride home that trip, and I have no intention of missing lunch during clinic ever again.

"Oh, you've got plenty of time," says the secretary. "See, you'll have your renal ultrasound at 11:30, and then you can go to lunch and come back at 12:45 for her head CT, and that won't take long, then you can come straight to clinic at one – and if you're late, it doesn't matter too much, as long as you're there by two."

It sounds great in theory, but I remind her of the day we were left forgotten in the hallway for over an hour and she said, crestfallen, "Oh, well, we have had problems with that." It's far too late to reschedule the ultrasound and head CT – these things are scheduled months in advance – but she offers me a morning appointment with the developmental pediatrician if it will make me feel better. "After you see him, you can go over to radiology and maybe they can work you in early, and your day won't feel so rushed." I agreed, which was how I ended up coming in at 9:30 for a day originally scheduled to begin at 11:30.

The nurse weighed and measured Cora, who clocked in at 18 pounds, 3 ounces and 27.5 inches (70 cm) long – a disappointment to me, since just a week ago at her pediatrician's office she weighed 18 pounds, 8 ounces and measured a full 28 inches. The nurse said reassuringly that scales vary, but I doubt they vary by 5 ounces. And the length measurements at Riley, taken on a board with a sliding crosspiece, are more accurate than the ones at the pediatrician's office, where they lay Cora out on a piece of paper, mark her head and feet and then measure between the marks.

We went to an exam room, where Cora submitted to having her ears, eyes, nose, throat, chest and belly examined with only token protest. I was asked to assess how she's doing. She's doing great, I tell them, really fantastic – but she doesn't grow. The child can't spend her entire life two feet tall, but nobody's offering me any insights or solutions. Why are we spending all this time with specialists if none of them have Answer #1? But that question went unasked, as the nurse observed my daughter playing happily with the toys in the room and concurred with my assessment.


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