When a disabled child dies
My daughter’s wheelchair was her legs, her computer was her voice. What would I do with the things she left behind?
IF THERE ARE STAGES OF GRIEF after a loved one dies, there are also stages of letting go. When my 7-year-old daughter Ruth died last February, the first came when I walked out of the emergency room into the cold sunlight without her, knowing I would never push her home again.
The flashy red and black wheelchair my husband, Dana, and I had spent more than a year getting Ruth was home beside the bed she shared with her sister. So was her cochlear implant, the electronic device that had allowed her to hear. Her hot-pink computer, which Ruth had called her “voice,” had been scheduled to come home from school for the first time later that week.
Because Ruth was deaf and had a severe form of cerebral palsy, such equipment allowed her to live as normally as possible. Steel-tube framing and giant rubber wheels transported her in a way her gangly, uncooperative legs would not. A surgically implanted microchip gave her the stories, music, and laughter her damaged ears could not. And the language program on her computer spoke the words Ruth’s mouth could never form.
Such ordinary functions were beyond Ruth’s innate abilities. And, yet, had she been ordinary, we would never have met her.
Born in Uganda and immediately abandoned, Ruth spent much of her first year in an orphanage called Welcome Home Ministries Africa. She was 3 months old and barely 3 pounds when an American missionary gave her a bed and a name. Ruth’s eyes were lively, but she never learned to crawl or sit up like the other children in the small concrete and dirt compound near the Nile.
Soon after Ruth turned 1, the orphanage’s new director, a retired nurse from Australia, contacted an organization that agreed to transport her to the coast of Maine for six months of physical therapy. Specialists volunteered to treat her. When she arrived in July 2004, a local family took her home.
That summer, Dana and I hauled our three rowdy children — Judah, 7, Gabriel, 4, and Lydia, 1 — from our home in Bath to a nearby church for the final night of a vacation Bible school. It happened to be the church of our friends Allen and Theresa Jackson, who were caring for Ruth and their own four children.
“So,” Theresa turned to me, dark eyes twinkling as Dana and I slid into the pew beside her. “Want to meet Ruth?”
It took me a moment to remember the baby her family was hosting. I had often dreamed of adopting a needy child and had even made Dana promise to let me go to Africa someday — alone if I had to — before I would agree to marry him.
We were high school sweethearts who’d married after I graduated from college. Dana is the kindest person I know, but, unlike me, he had no vision of rescuing a child. Adoption isn’t something you push someone into. I knew that. Yet I’d watch our boys build forts in the backyard, and then picture children I had read about living in garbage dumps. I’d sing to Lydia, safe in her crib, and imagine her sleeping in the darkened doorway of a deserted street.
I couldn’t reconcile my family’s comfort with the absolute misery of others. But what could I do? “If God has a child for us,” Dana and I finally resolved, “he’ll have to bring the child to us.”
And that is how I found myself sitting next to Theresa in church as she cupped her hands around her mouth and called, “Hey, Allen!”
A balding head turned in the crowd. People pressed to the sides of the aisle to let him pass. And then I saw her — the scrawny child dangling from his arms. Ruth was tiny, limp, and dressed in a pink Onesie that sagged where her tummy, thighs, and bottom should have stretched it tight.
“Want to hold her?” Allen said as he slid Ruth into Dana’s arms.
Ruth’s head flopped against his shoulder. Her left eye turned in toward her nose. Nothing stayed where it should. Ruth was alternately stiff then loose, as if someone had forgotten to tighten her muscles. But she was smiling — a lopsided, baby-toothed “Here I am” smile that dimpled her cheeks and made her eyes gleam. Her head was fringed with a thin scrub of curls. Her skin glowed the color of gingerbread. And she was beautiful — stunning — with a high, rounded forehead, wide chestnut eyes, and a fat little pucker of a nose.
Don’t say it, I told myself. Don’t say a word.
And then Dana said it for me. “So, do you want to adopt her?”
My dreams of adopting had never included a child with special needs — not ever. And, yet, here Ruth was: African, parentless, smiling from the cradle of my husband’s arms.
Over the rest of the summer, Dana and I talked about what adopting Ruth might be like. We talked to our kids, to our pediatrician, to the organization that brought Ruth here, and to the director of her orphanage. We even brought Ruth home for a couple of weekends to practice caring for her.
Our children loved Ruth from the start. Judah, burly and protective, had been first to beg us to keep her.
“We can’t abandon Ruth,” he’d said. “She’s already been abandoned.”
Gabriel shook his shaggy blond hair to make her laugh. And Lydia, older than Ruth by just 19 days, frequently plied apart her fingers to insert a rattle or crayon.
As for Dana and me, it was clear. Ruth belonged to us as much as if she’d been born to us. We knew we wanted to make her part of our family.
There was just one problem — how.
Despite having 2,000,000 children who have lost at least one parent in a country the size of Oregon, Uganda does not encourage international adoption. In 2003, the year Ruth was born, Americans adopted just three Ugandan children. Over the past year, the number had climbed to only 207. By comparison, Ethiopia, not far to the northeast, had the second-highest number of US adoptions in the world: 1,727. China, with 2,589, had the most.
One reason so few Americans adopt children from Uganda is because the country is not part of the Hague Convention that governs international adoptions. Uganda also requires that foreign prospective parents live in the country for three years while fostering the child they want to adopt. We couldn’t even find a US adoption agency working in the country.
That October, Ruth moved into our home as we extended her visa and began searching for a lawful way to keep her. Our chances seemed grim.
“Even if we could find a way to adopt Ruth,” we told our children one night at the kitchen table, “we don’t have the kind of money it takes.”
Gabriel, who had just turned 5, stood up and left the room. He returned with a mayonnaise jar of coins we’d been saving to buy a dog. “We have this money,” he said.
Nine months of fund-raising, two lawyers (one in Maine, one in Uganda), and one monthlong series of home inspections later, I said goodbye to my family and set off with Ruth on a three-week journey through East Africa, still not knowing whether I would be able to bring her back home.
Because of Ruth’s medical needs, Uganda’s High Court gave me permission to become her permanent legal guardian. We crossed the border on a 10-hour bus ride to Nairobi to pick up her new US visa and obtained the final document we needed six hours before catching our plane.
Six months later, on Valentine’s Day 2006, our friends and family crowded into the little brick courthouse just down the street from our home as we completed Ruth’s adoption.
“BUT SHE’S NOT EVEN 2!” I’d objected when Ruth’s physical therapist suggested a wheelchair. I was afraid that once Ruth had a wheelchair, she’d always need it, as if by some evil enchantment the chair would suck the potential from her limbs. It seemed cruel to strap a child to a piece of metal.
“Why don’t I bring a loaner next time I come?” Peggy nudged. “Then you can see how it works.”
The following week, Peggy and another therapist, Jan, lugged a 2-foot-tall metal contraption through our front door and dropped it in the living room. Judah, Gabriel, and little Lydia crowded around, pulling straps and playing with buckles. Peggy lifted Ruth from the floor and cinched her in, pinning her sparrow-thin shoulders against the seat back with a Velcro vest. By the time Jan secured her feet, only Ruth’s hands fluttered free. I wanted to rip her out, but Judah was thrilled.
“Look, Mom!” he said, grinning. “Ruth’s sitting up just like a regular kid.”
Then I saw what he saw. Not the buckles. Not the chair. For the first time, Ruth was sitting tall and straight and on her own. And she was smiling.
A team of therapists came to the house twice a week — stretching Ruth’s limbs, massaging her muscles, blowing bubbles that she popped by uncurling the index finger on her right hand. Ruth, at 3, remained trapped in a body with the physical skills of a 2-month-old.
During Ruth’s first winter with us, a hearing test revealed she was also deaf — a devastating discovery, because she was unable to control her hands to sign. And that wasn’t all. A neurologist said that she was also likely to be severely retarded, a prediction we rejected and Ruth quickly proved wrong.
Twice a week for two years, I packed the kids into our clunky Ford minivan and drove 45 minutes south to the Maine Educational Center for the Deaf and Hard of Hearing on Mackworth Island, near Portland, where we learned to sign to Ruth.
A friend had already helped us give her a sign name by crossing our fingers to make the letter R and brushing the tip of our nose. But a deaf teacher at the school waved her hands in horror when I showed her.
“Rude” she wrote on the classroom white board, indicating the sign I’d made. “Or” . . . She made her crossed fingers veer off the end of her nose and wrote the word “rat” on the board.
But we weren’t far off. She lowered her crossed fingers below her nose. That meant “rose.” Ruth’s new sign name stuck.
We also began a year of testing at Children’s Hospital Boston to evaluate Ruth for a cochlear implant, a surgery she underwent in 2007, the summer after she turned 4.
Because Ruth had missed a crucial developmental window, we were warned she might never understand spoken English. And so began three years of additional therapy, teaching her to listen. Ruth astonished us all, doing so well that in 2010 she began first grade at our public school, Dike-Newell, without an interpreter. By the end of that September, she could spell the name of every child in her class, plus the 25 words students had until the end of the year to memorize. And she had a boyfriend — a 6-year-old who’d been adopted from Ethiopia and made Ruth smile.
To communicate, Ruth used a white board printed with the alphabet. We would point to letters one at a time, and Ruth would stick her tongue between her missing front teeth for “yes” when we landed on the right one.
“Do you want a snack?” I’d ask on the days I got Ruth off the school bus, pushing her up the 100-foot-long ramp we’d had built to our front door.
No. She’d give me a blank look, her sign for “try again.”
“Do you want to watch a movie?”
“Do you want to read?”
Yes! Her tongue would extend all the way down to her chin.
After starting public school, Ruth got her own computer. Hot pink. Dana was there the day she wrote her first sentence.
Ruth selected icons on the screen by kicking buttons, and the computer spoke: “I want Mom.”
“Mom is not here,” said Mark Hammond, Ruth’s augmentative communication specialist. “What else do you want?”
“I want book,” Ruth said.
That was it, the start of everything we’d worked and prayed for: Ruth could now initiate conversation instead of only responding.
Yet, for all the sounds her cochlear implant gave her — the nursery rhymes we sang, the books we read aloud, the squeal of her own voice laughing — the technology was also inconvenient. Batteries needed recharging. Minuscule parts broke or got lost. And instead of fitting behind Ruth’s ear as designed, the clunky plastic microphone had to be secured to a puff of her hair to keep it from hitting the headrest on her wheelchair.
Then there was the chair itself. In preschool, she’d upgraded to a pediatric pushchair, but after five years, the front wheels no longer tracked and the footrest was duct-taped together. It took so long to replace because a therapist had advised taking Ruth to the seating clinic at Children’s Hospital. Our insurance company took six months to approve it, and then we discovered the clinic wouldn’t accept our insurance. So we had to start all over.
When the new chair finally arrived, I was disappointed to discover it was too heavy for me to lift, which made taking Ruth out difficult. But there were ways to keep it fun. Sometimes on walks I’d prop the wooden stick of Lydia’s hobbyhorse in the footrest and give Ruth the reins. When she clicked her tongue, we’d tear around the block at a flying gallop. Or Lydia would wedge old curtain rods into the seat and stretch a tablecloth over the top to create a royal carriage. Then she’d wear a shoe-box horse head and pull her shrieking sister around the house.
Ruth’s laughter was so rewarding, I couldn’t imagine our family without her. What we would have missed had we not brought her home.
FOR BEING SO PHYSICALLY restricted, Ruth was remarkably healthy. She struggled to eat, however, often tiring before swallowing enough food. Just after her seventh birthday, this necessitated a feeding tube. But Ruth had never once suffered the dangerous respiratory infections we’d always watched for.
That is why we were so unprepared that dark February morning when I awoke to Dana shouting up the stairs: “Meadow, call 911. It’s Ruth.”
I could hear the careful control in his voice and, just behind it, the panic.
“What do you mean ‘It’s Ruth’?”
Dana raced up the stairs and stood in the doorway of our room. “She’s not breathing. Meadow, I think she’s dead.”
“No, God!” I shouted as I picked up the phone beside our bed, hands trembling. “No!”
The phone line wasn’t working. All I got was static. I raced downstairs after Dana.
“No, God! No!” I couldn’t stop yelling.
“What’s wrong?” The other children were awake. Lydia stood in the hall, where Dana had sent her after shooing her out of the bed she and Ruth shared.
“Go upstairs,” I told her. “Go get in my bed.”
I grabbed the phone in the room next to Ruth’s. I was afraid to go in her room, afraid that if I saw her, what Dana had said would actually be true.
After reaching the emergency dispatcher, I repeated his instructions to Dana, who laid Ruth on the pink carpet of her bedroom and began breathing into her mouth. The paramedics arrived a few minutes later. I stumbled into the living room and knelt by the couch, begging God for a miracle as the flashing red strobes of two ambulances lighted up the street outside. I returned to the hall a few minutes later to see an EMT carry my daughter’s body out the door.
Dana called his parents and our pastor while I followed the ambulance to the hospital, less than 10 minutes away. It was a little past 6, so early that the emergency room seemed empty. I walked up to the receptionist’s window, not knowing what to expect, and asked to see my daughter.
“Her name is Ruth.” I raised my right hand to my mouth, crossing my middle and index fingers, making the sign for rose. “She’s deaf.”
The woman wouldn’t meet my eyes. She typed in Ruth’s information, and then a nurse ushered me into a private room. From her expression, I realized that Ruth would no longer know her name no matter how I said it.
Not even the doctor could tell me why Ruth had died. I went over every detail from the previous week, everything I could remember. She’d had what seemed like a mild cold. But by Saturday, Ruth had appeared fine. Her caregiver, Christina, a young woman from our church, had read her books. That night, I’d given Ruth a bath. Dana had dressed and tucked her in bed. And when he’d found her that Sunday morning, the only sign of distress was that Ruth’s pillow and sheets were soaked with sweat.
“Sometimes with CP, these things just happen,” the doctor said quietly.
And so, without even an explanation for why we had to, we began the process of letting Ruth go.
THERE IS A RABBINIC SAYING that whoever saves one life has saved the world. I found the opposite is also true. Dana and I had four other children — including our son Asher, born one year before — but in losing Ruth, I felt as if I had lost the world.
Even before her memorial service, I began cleaning out her clothes. I had to do something — anything — to keep from clawing a hole in the earth and crawling in there to die, too. So I sat on the floor beside Ruth’s dresser — the one I’d painted with polka dots when we’d first brought her home — and separated her stretch pants and striped socks and flowered dresses into a small pile to save and a large pile to give away. I didn’t want to toss anything I would regret not keeping, and yet I needed work to fill the void in which I normally took care of Ruth. In place of clothes, I packed her drawers with books, photos, and hair bows.
I thought I was dealing with Ruth’s death well until the night I went to bed and realized I’d gotten rid of her favorite pink slippers — the ones I’d stuffed in her stocking two Christmases before. What had I done? I thought of knocking on the door of the clothing bank and explaining my mistake. Maybe I’d retrieve Ruth’s sparkly pink shirt, too.
Dana shook his head when I told him my plan. And I knew he was right. Our house wasn’t big enough to hold it all, my arms weren’t long enough. What next? The tuft of black hair I’d swept up that morning from the bathroom floor? But what were we to do with all that remained?
When a friend’s adult brother drowned, relatives awoke early the next morning to the ringing of the phone. It was an agency calling to ask if the family would donate his organs, which it did. Whether because of Ruth’s health conditions or because an unknown amount of time had elapsed after she’d died, no one had asked this question of us. Instead, we were left with what we came to think of as Ruth’s external organs: her hot-pink “voice,” the processors for the implant that functioned as her ears, and her new wheelchair.
When a patient dies in a hospital, officials are required by law to notify the nearest of 58 organ procurement organizations in existence across the country. The idea is to speed the delivery of organs to the more than 112,000 US patients currently awaiting a transplant. However, despite a national health-care cost crisis, no similar system exists for the reuse of expensive equipment and assistive technology.
I called Ruth’s communication specialist to ask why. “The technology gets outdated very quickly,” Mark Hammond said. “If it’s old, it takes more effort to make it work. If donated to a loan bank, there is a window of opportunity to get it out when the equipment is still in useable condition.”
A handful of nonprofits, such as schools and organizations that serve the elderly, run private loan banks, collecting wheelchairs and walkers to redistribute. Other groups send equipment overseas, but the type of gear they accept is limited, because it can be pricey to ship and hard to store.
Then there’s the issue of liability. I called a school for children with disabilities, then a Maine agency devoted to helping those with cerebral palsy, and then our local school transportation company, but no one would accept Ruth’s specialized $600 car seat for fear someone could be injured, even though it was only three years old and up to code.
More than two decades ago, Maine Medicaid did take old equipment, according to Kathy Adams, an occupational therapist and assistive-technology specialist in Augusta, “but their challenge was the issue of refurbishing and, frankly, sanitizing it.” Today, Adams works at the coordinating center for the Maine Consumer Information and Training Exchange, a federally funded program that helps people buy, sell, or donate used assistive technology. The organization is a member of a website, the Assistive Technology Exchange in New England, that Dana used to post Ruth’s like-new bath seat, another $600 piece of equipment no one had wanted.
Thanks to a federal mandate, every state now participates in a similar exchange. But the number of transactions on New England’s exchange, which serves the entire region, is light. From October 2010 through September, only 156 items switched hands — from wheelchair ramps to adaptive vans — but the savings were huge. Those items resold for $72,800; if purchased new, they would have cost more than $603,000.
Hoping to ease our grief in losing Ruth, Dana and I chose a more intimate route for donating her most personal equipment. We mailed the two processors for Ruth’s cochlear implant to Children’s Hospital. Specialists there passed Ruth’s newer devices on to two young girls, who were able to hear a wider range of sound than they could with their older technology. Dana and I drove Ruth’s “voice” to Hammond, who gave it to an 11-year-old girl who was slowly losing her own to a degenerative disease.
On a late summer day threatening thunder, Dana and I drove two hours south and met the girl’s parents, who welcomed us inside a snug apartment. Their daughter sat coloring at the kitchen table. And there, next to the crayons, was Ruth’s hot-pink computer. Seeing it, I felt a jolt of envy as I remembered all the years of hoping to hear my daughter speak, wondering what she would say.
“Want to show them what you can do?” the girl’s mother asked.
The girl’s head tilted heavily downward. The progression of the disease has made her muscles difficult to control, but she raised her eyes and aimed an unsteady finger toward the screen, touching an image of herself.
“My name is Berleeann Bouchard,” a recording of Berleeann’s own voice said. She tapped the icon over and over, smiling.
An hour later, Berleeann wrapped her arms around my neck and gave me a kiss and a sticker from her coloring book: a blooming pink rose.
HARDEST TO PART WITH was Ruth’s wheelchair, which sat by our door gathering skateboards and jackets and dust. After traveling to Uganda, I’d planned to someday return with Ruth and the rest of our family. Since that was no longer possible, I went online and found Wheels for the World, an outreach of Joni and Friends, a Christian nonprofit based in California that distributes wheelchairs in developing nations around the globe. In March, I called the program’s office in Boston and left a message.
“Wouldn’t it be amazing if they had a trip going to Uganda?” I’d asked Dana.
When the regional director called me back, she astonished me by saying they did. Only there was a hitch. The group doesn’t allow donors to specify a particular country for their gift. With an average of 7,000 chairs going to 20 countries annually, it’s too complicated.
But the group needed one additional wheelchair mechanic to join the college students, physical therapists, special education teachers, sign language interpreters, and nurse already on the team preparing for a two-week trip to take 100 wheelchairs to Uganda.
So Dana — who often stayed up late at night fixing wobbly wheels and sticky brakes and even fashioning a new headrest from a sheet of metal in our basement — flew halfway around the world in July with Ruth’s wheelchair. Our pastor, Gregory Vinson, who is a sign language interpreter, and Ruth’s caregiver, Christina, went, too, while I stayed home with the kids.
Six months after losing Ruth, I drove Dana to Portland. Gabriel pushed Ruth’s empty chair into the airport, her pack now loaded with tools. Judah wheeled little Asher around the terminal in a stroller, while Lydia sat on the armrest of Ruth’s chair — her usual spot — and Dana checked in. But all I could look at was the empty seat. Hoping not to draw attention to myself, I bent and kissed the inside curve of Ruth’s headrest goodbye.
Over the following days, the kids and I waited anxiously to discover who would get Ruth’s chair. It had to be a girl, I prayed. It just had to be a girl. And then, one week later, came Dana’s e-mail.
“I was praying we would be able to find a girl that would be the perfect fit for Ruth’s chair,” he wrote. “All of our physical therapists were looking too, but most of the kids were either too little or they were somewhat ambulatory, so Ruth’s chair would not be a good match.
“Then in comes this mom with her little 6-year-old girl in pink tights with stars (a lot like the ones we used to put on Ruth). She had a great smile with all of her front teeth missing.” Her name was Madrine.
I HAD TO WAIT UNTIL Dana’s return to hear the rest. The kids were so excited to welcome him home and see their presents that it wasn’t until later that we were able to talk.
Neighbors had sent over a gourmet dinner in a box complete with blueberry pie and instructions to sequester ourselves in my outdoor writing shed.
“Did it help?” I asked when we were alone. “Putting another child in Ruth’s chair?”
“Yeah.” Dana looked spent from the 30-hour journey home. “One of the therapists actually put her in the chair, but I made all the adjustments.”
“Was it hard?”
“I was bawling the whole time.”
I asked him to tell me the story of his trip again, once more from the beginning. I wanted every detail, to fill my mind with the firm, clear knowledge that Ruth’s life would continue making a difference. Dana repeated what he had told the girl’s mother — how Ruth had been born in Uganda, how she’d been diagnosed with CP, and how we’d adopted her. Dana had shown the woman a picture of Ruth, which she had asked to keep, and given the girl Ruth’s favorite stuffed bear. Then, through an interpreter, he’d explained that the wheelchair had also belonged to our daughter.
“Only the interpreter didn’t tell her Ruth had died,” Dana said, “so the mother thought Ruth had outgrown the chair.”
“What did she say?”
“She took my hand and said, ‘Thank your daughter for me.’7nbsp;”
Meadow Rue Merrill, a former Globe correspondent, is writing a memoir about Ruth. Her husband and their pastor are preparing to return to Uganda with Wheels for the World next summer. Send comments to email@example.com.