Chapter Ten

The Storm Before the Calm

In 1995, as winter struggled to turn into spring, we found ourselves in a kind of suspended animation. Becky was doing well, Tim continued to grow and thrive, and we were thoroughly acclimated to our home’s being open to nurses and medical-supply workers at all hours of the day and night. The Beverly Times was switching over to a computerized photo-editing system, which meant that Barbara was putting in sixteen-hour days for a while. It was not unusual for her to arrive home after eleven o’clock at night on Mondays and Tuesdays — the two days that she worked — to find Becky’s night nurse, Renée Maloney, and me laughing uproariously at Beavis and Butt-head.

But though it might have looked like a comfortable routine, it only masked the stress under which we were living. Every parent of a young child knows that nothing stays the same for long. That’s doubly true when you’re tending to the needs of a sick child.

By this point Becky was getting seventy-two hours of home nursing care each week: seven overnight shifts, plus Barbara’s two work days. That was a slight reduction from the eighty-four hours we had received during the first few months after Becky’s discharge from Mass General, but it was still substantial. And we knew it would soon end. The nursing agency was already showing little ability — or inclination — to fill all of the overnight weekend shifts. And the nursing supervisor stopped by for a visit one evening to inform us that we could expect a significant cutback in our weekly schedule, since the state couldn’t be expected to pay for such extravagance indefinitely. I wondered if anyone had ever talked that way to the CEOs of Fidelity Investments and Raytheon, who were receiving roughly $100 million in tax breaks from Massachusetts politicians at roughly the same time that we were being lectured to about how selfish it was to expect to sleep on a Sunday night.

Dr. Cunningham and Dr. Shannon had told us from the beginning that Becky would need her trach for about two years. She hit the second-anniversary mark in February. Barbara was already making plans to enroll Becky in preschool that fall, giving her a long overdue chance to be with other children in a normal, worry-free environment. Cunningham wanted to try to remove the trach later in the spring. If all went according to plan, Becky could begin a new life as a regular little girl. But if the trach had to stay, Cunningham had already informed us that he wouldn’t try again for another year. Becky’s progress would be dealt a huge setback. Fewer nursing hours meant that we — mainly Barbara — would have to choose between sleep and work. And we would remain dependent on a bureaucracy that was becoming increasingly unresponsive.

It was, in many respects, the most nerve-wracking time we’d had since those two months in Mass General. We felt like everything was hanging in the balance when Becky entered Mass Eye and Ear the first week of May to have her trach removed. Within hours, that pressure would be ratcheted up to the boiling point.

Becky was put under general anesthesia so that Dr. Cunningham could remove her trach tube, give her trachea a close look, and slice off any scar tissue and overgrowth that had built up inside. She was slow in coming around from anesthesia after her surgery. Combined with what Cunningham described as a “floppy larynx,” Becky was, for many hours after decannulation (the medical term for undoing a tracheostomy), unable to breathe without something plugged into her trach hole to keep her airways open. Her trachea had done its job over the previous two years, growing to the point where she could inhale enough oxygen and exhale enough carbon dioxide — but only if there were something there to keep her airway open and prevent it from collapsing in on itself.

I saw Becky a few hours after surgery. She was sitting up in bed, watching Winnie the Pooh videos, with some sort of a tube with tape over the end inserted into her trach opening, not letting air in, but just holding the walls of her trachea apart. Becky was tired, unresponsive, unhappy. Cunningham explained that she struggled to breathe every time he attempted to remove the tube, that she wasn’t quite ready yet, and that he hoped he’d have better luck the following day. But he made it clear that if there was no change, she’d have to keep her trach.

I drove Tim home while Barbara stayed at the hospital. It was a long, slow, terrible drive. For some reason, I have a photographic memory of looking at the cement plant that sits in the middle of the interchange joining Interstate 93 and Route 1. I have no idea why. I also recall thinking that all of our hopes and dreams were on the verge of being dashed — that Becky, who I’d always thought of as a normal kid who’d had one unusual but temporary problem, was turning into a chronically ill, disabled child who would never be all right, and that her life and our lives would forever be defined by that reality.

And yet amazingly, miraculously, the next day brought a complete turnaround. It was as simple and undramatic as this: one day she couldn’t; the next day she could. As the aftereffects of the anesthesia wore off and she got her strength back, the walls of her trachea became strong enough that they could support themselves on their own. Becky came home completely unencumbered: no trach tube, no oxygen, no suctioning machine, no nothing. In less than twenty-four hours we’d hit bottom and then been vaulted to the top.

It was over. She was free. And so were we.

***

Removing a trach tube from a healthy toddler is not the sort of procedure that requires a lengthy recovery. Becky went from being a child with significant medical problems on May 4, 1995, to being a perfectly healthy, average kid — albeit one with dwarfism — on May 5. Because the nurses had already been scheduled for the week, we let them keep coming — after all, it would take us time to get our confidence back. For a few days we kept using the oximeter at night, taping the probe to her toe. Her oxygen-saturation levels stayed in the upper 90s. Unbelievable.

Once we began to accept that this gift was real, we did what we’d dreamed of doing for two years. We bid a tearful goodbye to the nurses. We told their supervisor that her agency’s services were no longer needed — a particularly satisfying moment. We called the medical-supply company to schedule the removal of its equipment. We arranged to cancel the government benefits we’d received through the Kaleigh Mulligan program. We moved Becky upstairs, to a bedroom next to Tim’s and ours, and converted her home hospital ward into a new TV room. And we had a big party for her in August, with dozens of friends and family members, complete with a huge Bouncy Bounce, an inflatable house inside which she and the other kids jumped up and down to the point of nausea. Barbara’s entire family was there — her parents, John and Joan Tanski; her sister, Mary Zysinski; her brothers, Jack and Steve Tanski, and Steve’s wife, Darlene; and assorted nieces and nephews.

But if Becky easily made the transition from sick to normal, it turned out to be unexpectedly hard for Barbara. For the first time, Becky wasn’t completely dependent on Barbara for her every need. Intellectually, Barbara knew she was finally free, or as free as the mother of two young children can be. Emotionally, she couldn’t let go. At Dr. Cunningham’s suggestion, we had asked the medical-supply company to let us keep the oximeter for one year. Every time Becky got a sniffle, Barbara hooked it up, watching the numbers and making sure everything was okay. It bothered her that if Becky’s oxygen sats dropped during the night, there’d be no alarm that would go off, and thus no parent or nurse to run to her side, patting her on the back, making sure she was okay. All that was over and unnecessary now — except in Barbara’s mind.

“I felt like I couldn’t breathe,” she told me one afternoon, remembering that difficult spring and summer. I asked her if she thought she’d been depressed. She replied that she wasn’t sure; she had no basis of comparison, no previous knowledge, to know what depression felt like. What she did know was that she’d coped with the previous two years by keeping herself in crisis mode twenty-four hours a day. And that it took her a long time, weeks, months, to get out of crisis mode. Even seven years later, a stretch during which Becky’s health has been completely normal with the exception of a steady stream of ear infections, Barbara has still not completely let go. She told me that if she’s sitting in the TV room at ten or eleven at night and she hears a truck coming down the street, she instinctively relaxes and tells herself, Okay, Renée’s pulling into the driveway. I can go to bed now and stop worrying for a few hours. I had no idea — a confession that I’m sure will sound familiar to every mother whose husband is not as fully engaged as he would like to think he is.

My guess is that Barbara had post-traumatic-stress disorder, and has a touch of it still. It’s not disabling — no more than an occasional flashback, really — but it’s still there in the back of her mind. Stoic to a fault, she’s never talked about it with anyone but me, and then only when prodded. I can only imagine how much worse it must be for families with a child whose problems and needs are greater than Becky’s. I’ve tried hard not to compare Becky’s — and our — problems with anyone else’s. What we went through was what we went through. The fact that babies are born with fatal illnesses, that kids are paralyzed in diving accidents, or, for that matter, that families sell their daughters into prostitution on the streets of Calcutta doesn’t change any of that. It dishonors Becky and trivializes what was genuinely a traumatic time in our lives to dismiss it by saying, well, it could have been a lot worse.

Even so, I can’t help but feel a sense of awe when I think about families who are able to hold heart and soul together when faced with much greater challenges than we ever had to deal with — children who aren’t going to get better, children who aren’t going to live long, children who will never be able to return the love that their parents shower upon them every hour of every day. We got just a taste of what that must be like, and it was enough. More than enough.

***

We’ve all read about white couples who adopt a black child, or an Asian child, and then struggle to put him in touch with his ethnic heritage. They understand that it would be extraordinarily hard, and harmful, to raise their children in an all-white world, completely disconnected from others like them. Kids need to learn that we’re all the same. But they must also learn what it means to be different — the good, the bad, the myths, the truths.

Dwarfism, as we’ve seen, is many things. It’s a genetic difference. It’s a disability. It’s a culture with its own millennia-old history. It’s an identity, an identity that can be altered, if not immutably changed, through years of painful, potentially dangerous surgery. And it’s a minority group, similar in many ways to minorities such as African-Americans, Asians, Latinos, and Jews.

I know families who have traveled with their dwarf kids to the national conference of Little People of America every summer just so their children can be with other dwarfs. We haven’t, although I attended the 2002 conference, in Salt Lake City, as research for this book. But we have tried to make it to regional conferences whenever we could, attending events in every New England state but Vermont. Becky didn’t seem to care much about LPA one way or the other when she was younger. But it’s grown increasingly important to her the past several years as she has become more aware of her dwarfism and of the reality that she’s not like everyone else.

Even more than such occasional gatherings, though, I think it’s important that any child who is different have the opportunity to get to know other people with the same difference, to see that their difference is not something they’re going to grow out of, that they can take some pride in it, hold their heads high, and succeed in spite of it, or maybe even because of it.

For Becky, and us, that person has been Ruth Ricker. Ruth has made several cameos to this point. But she has meant far more to us than simply being an occasional presence in our lives. When Becky was sick, I looked to Ruth as a model, a real-life symbol of what Becky could be if she could just get better. When Becky got a little older and couldn’t quite understand the whole dwarfism thing — that, no, she wouldn’t remain a child forever just because she was shorter than everyone else — Ruth helped explain it to her, told her that she had a job, owned a home, and drove a car, just like Mom and Dad. Ruth even showed her the pedal extenders she uses so that she can reach the gas and the brake. Later, Ruth adopted a dwarf boy from Latvia, Janis, who is almost exactly Becky’s age and with whom she has become fast friends. (Janis, which is Latvian for “John,” is pronounced YAH-nis. His nickname, Jani, is the equivalent of “Johnny,” and is pronounced YAH-nee.)

Ruth Ellen Ricker is a remarkable woman whose life parallels the cultural changes in how dwarfism is seen: from a devastating birth defect to an identity, even a source of pride. Born in Calais, Maine, a tiny town on the New Brunswick border, she was the second child and first daughter of George and Wendy Ricker.

George was a struggling young schoolteacher; Wendy, a psychologist, was at that time a stay-at-home mom. In those days little was known about achondroplasia, and the Rickers couldn’t believe their daughter would be able to lead a normal life. A bone specialist once tried to cheer them up by saying that Ruth was probably of normal intelligence and could possibly live to the ripe old age of twenty-five or thirty. But a funny thing happened: Ruth thrived. The Rickers moved to a small town just outside of Portland, in part to be closer to Boston, where Ruth’s specialists were. Ruth was smart and, aside from ear infections, healthy. Still, they weren’t quite ready to trust what they were seeing.

When Ruth was six, the Rickers learned that Little Oscar, the Oscar Mayer mascot and one of the original Munchkins from The Wizard of Oz, was coming to their hometown IGA supermarket. They brought Ruth to see him, thinking it would be good for her to meet a dwarf adult. Oscar — Meinhardt Raabe — took to Ruth immediately, and he and his late wife, Marie, stayed in touch with her for many years. More important, he put them in touch with Little People of America. Soon they were attending their first meeting, at a member’s home in Massachusetts.

“There was a baby there, and other than that I was the only child,” Ruth told me. “It was mostly short-statured adults with all different types of dwarfism, some pretty unique-looking. I was aware that I was short, but I didn’t see myself as having any unique structures or proportions — which I certainly do, and did even more at six than I do now. I remember thinking, ‘These people are nice, but I’m not like that.’ I didn’t see myself looking like any of them.”

But as her self-awareness grew, her attitude changed: LPA quickly became very, very special. “You know, it was like the magic of Christmas or Disneyland — just being with these other people, kids and adults, who were like me,” she said. “And the larger the event, the more significant it was. It’s somewhat mystical. It’s spiritual. It’s a closeness that, from my experience, is only akin to relationships that you develop at camp or in any other intense situation where you’re thrown in with people that you might have something in common with.”

Ruth underwent leg-straightening surgery when she was fifteen, a turning point that transformed her from a kid whose brother, Bill, pushed her around in the “Rickershaw” — a contraption made of tubing and bicycle tires that a former student of George’s had welded together — into an independent young woman. She enrolled at Northeastern University, in part because its massive campus was concentrated in a relatively small area, which would allow her to keep her walking to a minimum. But she soon found herself walking everywhere, as much as a mile to her off-campus job and back. She remained active in Little People of America, helping to plan the 1983 national conference, which was held in Boston, and holding a variety of regional and national positions, culminating in the presidency in 1994.

Ricker proved to be a savvy political activist. When she learned that a then-little-known scientist named John Wasmuth was about to announce that he had discovered the genetic mutation responsible for achondroplasia, she got LPA involved and worked with Wasmuth in order to get out the message that genetic screening should not be used to terminate fetuses with dwarfism if they were otherwise healthy. She got LPA more involved in disability-rights issues, including access to ATMs and gas pumps. When I suggested setting up a dwarfism discussion group on the Internet, she gave me all the support I needed, a step that eventually led to the formation of the Dwarfism List, an interactive forum comprising nearly eighteen hundred members, and LPA Online, the organization’s Web site. She talked about reaching out to gay and lesbian little people and about helping the dwarf community with problems such as substance abuse — problems well-known in society-at-large, but generally whispered about, if mentioned at all, within a culture that has absorbed too well the lesson that in order to succeed they must be better than everyone else.

And then — to my astonishment, and I’m sure to that of others as well — she walked away after one two-year term, saying she needed to build a life for herself outside of LPA.

I first interviewed Ruth in 1994, for a profile I was doing for Northeastern’s alumni magazine. Since then, Barbara and I had become so close with Ruth, and Becky with Jani, that it felt weird to do anything so formal as an interview. But during a summer afternoon, after she’d dropped Jani off with her parents for a week in Maine, she stopped by our house for some time with me and my tape recorder. At forty-two, she seemed happy and fulfilled. She’d been a success as a public person and as a professional since her early twenties. Now, finally, she had built a successful private life for herself as well.

By 1996, she explained, she’d decided that more than anything she wanted to adopt a child, and that she wouldn’t have the time to do it unless she stepped down as LPA’s president. A civil-rights investigator with the U.S. Department of Education, she could offer a good, stable income and home. Because she would be a single parent, she deliberately sought a slightly older child who would be at least somewhat self-sufficient. And through LPA’s adoption program, she learned about Janis. Ruth and her mother traveled to Riga, the Latvian capital, in August 1997, when Janis was just one month shy of his sixth birthday. She took him home and three weeks later she put him in kindergarten. Needless to say, the whole experience was traumatic for Janis — and for Ruth, too.

“I learned enough Latvian so that I could explain, ‘Mommy is coming back at the end of the school day.’ I was working part-time at that point. I took three weeks off before school started, and that was my maternity leave,” Ruth told me.

Nor have Ruth and Jani had an easy time of it since. After she got him to Boston, she realized that he’d been suffering from chronic ear infections — hardly a surprise for any kid with dwarfism. That was cleared up, but, later, he was put on Ritalin and then Adderall to help him concentrate, medication he has continued to use off and on. He repeated the third grade. She takes him to the doctor regularly to deal with a kidney problem. And she still doesn’t know exactly what type of dwarfism he has: he meets some of the criteria for achondroplasia, but he doesn’t look much like a dwarf except for his short stature, which leads her to think that he might have hypochondroplasia instead.

Such challenges notwithstanding, Janis Ricker today is a happy, well-behaved, mostly healthy boy, a blond kid in glasses who seems never to stop running and jumping around. He and Becky have played at our house, and he is the first person Becky looks for at LPA gatherings. They have even talked about marrying, a subject that is surely a good decade-and-a-half premature. But it demonstrates that they’re aware of their differences and of the affinity they have for other people with those same differences.

I wouldn’t want to bet a week’s pay that Michael Janis Ricker and Rebecca Elizabeth Kennedy will ever walk down the aisle together, but who knows? I do know how important it is that Becky sees Ruth as an intelligent, competent adult with a life as full and rewarding as that of any other adult. And that she understands she and Janis can have that kind of life, too.

***

The last seven years of Becky’s life have been unremarkable — which is, after all, everything we’d hoped for. She goes to a regular public school. She’s not treated quite the same as everyone else: the handrails on the stairs and the bathroom have been modified to fit her size, and, until she finally gave it up out of self-consciousness, she sat in a special chair that prevented her legs from dangling. She now keeps a stool under her chair. She takes swimming lessons and is learning to play the clarinet. She’s good at it, too. I helped get her started, and one of our favorite activities is to play duets, with me on guitar. She volunteers in the children’s room at the town library on Tuesday evenings, when Tim and I are at Boy Scout meetings. She’s a Girl Scout. She’s been to Disney World twice. She loves our cat, Dexter, and loves to watch TV — so much so that we have to set strict limits. She’s funny and talkative and a delight to be with. Her life is so normal that when, a few months before Becky’s tenth birthday, Barbara had a chance to return to work full-time at the Salem News (the paper into which the Beverly Times disappeared after a merger and two sales), she was able to accept it without hesitation.

She’s got some quirks. She seems more comfortable with adults than with other kids, and she doesn’t like to try new things, whether it’s food, books, or riding her bicycle without training wheels. Maybe it’s because of all that she went through when she was a baby. Maybe it’s just her personality. Whatever the case, we know we’re living in a golden period, a bubble, a moment when her dwarfism is not nearly as important as it was when she was younger, or will be when she’s older. She hasn’t been stuck at home without a date yet. She hasn’t been turned down for a summer job by a manager who thinks, but doesn’t dare say, that she can’t reach the counter, can’t lift the trays, can’t do this, can’t do that, can’t keep up with the other employees. Her legs are straight, her back doesn’t hurt, and she’s not begging us to please please please get her that operation she’s seen on TV so that she can be tall like everyone else. All of this may come. But not now, not yet.

Nevertheless, her dwarfism has affected her in subtle ways — so subtle that we’re only now beginning to figure it out.

***

Right after Becky’s coming-out party in August of 1995, Barbara and her sister, Mary, took off for Disney World, where they spent a week at my in-laws’ time-share condo. For Barbara, it was a much-needed chance to decompress. In September, Becky entered preschool, in a so-called integrated class of kids evenly split between those with special needs and those without. It was a wonderful place for Becky. She started the year speaking no more than one or two words at a time. By Christmas she was well on her way, interrupted only by surgery at Mass Eye and Ear to have her adenoids downsized — pretty much standard for kids with achondroplasia.

During Becky’s second year in the integrated preschool we began to receive reports of the trouble she had paying attention in class — that she would lose focus, speak out of turn, couldn’t follow directions. While the other kids would gather round for story time, Becky might be in another corner of the classroom, looking at picture books. We were concerned, but she’d been through so much, and was still so young, that we were sure it would resolve itself. The following year she was eligible for kindergarten. Since she would have been the youngest child in her class and she still had some significant delays, we sent her to a private preschool, the same one that Tim had gone to when he was younger. With Becky out of the special-needs environment, we didn’t hear much that year about her attentional difficulties.

In first grade, though, Becky’s inability to focus returned as a steady, frustrating theme. She was evaluated by the school system’s special-education staff and given an Individualized Educational Plan, or IEP, a government-mandated set of goals that is drawn up for all special-ed kids. She was taken out of the class-room a few times a week for help with language skills, help she was still receiving in the fourth grade.

Barbara tried to compensate for Becky’s classroom deficiencies by putting in many hours helping her with her homework. But she’d squirm when either of us tried to read to her, squirm when she tried to read by herself, squirm when filling out arithmetic worksheets, and make it very clear that she would rather think about anything other than schoolwork.

From first grade on, we were getting subtle pressure to have Becky diagnosed with attention-deficit/hyperactivity disorder (ADHD) and to put her on Ritalin or a similar medication. We resisted. We certainly didn’t reject the idea that medication can be useful for some kids. But we thought that there had to be a better way for someone like Becky, whose problems were subtle, who was not misbehaving in class, and who, despite everything, was still managing to do low-average work. We were also concerned about reports that Ritalin could impede growth. We weren’t so much worried that she might end up being three-foot-eleven rather than four-foot-one. But if medication affected the growth of the opening in her spinal column, the effect could be devastating.

Yet the more Barbara tried to do, the farther Becky fell behind. Finally, toward the end of the third grade, we had her evaluated by a child psychologist at North Shore Children’s Hospital. His diagnosis: ADHD, inattentive type. After assuring us that he would never recommend medication, he proceeded to do exactly that for the next half-hour. Barbara was ready to try anything. I wasn’t quite there yet. In reading about ADHD, I came across a term I hadn’t heard before: central-auditory-processing disorder, which, to oversimplify, is characterized by the inability of the brain to understand what the ears are hearing. The symptoms seemed to fit Becky better than ADHD, and she had several risk factors for such a disorder, including a long hospital stay as a baby and frequent ear infections.

What we ended up learning was even more surprising. Becky does, indeed, have an auditory-processing disorder, though not a severe one. Far more important is that she has a slight but permanent hearing loss — a loss that is often more than slight during the school year, when she, like many kids, goes from one cold to another, and her ears are frequently congested and occasionally infected.

The full dimension of Becky’s hearing problem was detected by Sandra Cleveland, an audiologist at Northeastern University, who is a nationally regarded expert on processing disorders. I’d brought Becky in to be evaluated, only to be told her hearing was so bad that we should see Dr. Cunningham. Becky told me that her hearing was fine, which Barbara and I realized was itself a sign of trouble: if she perceived her hearing as normal that day, then we knew it must be substantially compromised a good part of the time.

Cunningham discovered that fluid had built up once again behind her left eardrum. He surgically inserted a tiny tube to drain it, just the latest of numerous tubes he’d put in over the years. The eardrum of her right ear was slightly perforated, allowing the fluid to drain naturally. Several weeks later, both Cunningham’s office and Sandy Cleveland conducted follow-up tests. The verdict: Becky’s hearing was within normal range, as it had usually been when tested over the years. But Cleveland explained to me that Becky’s hearing was normal only for an adult. It wasn’t good enough for a child, who lacks an adult’s ability to fill in missing information, and who, unlike most adults, must spend long periods of time in classrooms listening to teachers talk. Cleveland said that Becky could hear if she worked really hard at it, but the effort would become exhausting and, after a while, she’d simply stop paying attention.

Barbara and I were angry with ourselves. For years we had treated Becky as though she had a hearing problem, getting in her face, speaking loudly and slowly. She’d always used some words inappropriately, and occasionally would ask us what, say, msfnglixzy means. We’d ask her to repeat it over and over, and it would keep coming out the same way, like she hadn’t heard it properly in the first place. But we’d told ourselves that it must be something else, since her hearing had been tested many times over the years and she’d always passed. Cleveland also explained that Becky’s diagnosis involved some new thinking as well — that as recently as five or ten years earlier, her level of hearing loss would have been thought by most experts to be harmless. Indeed, Cunningham didn’t think Becky’s hearing loss was as significant as Cleveland did, a reflection of the difference between their roles: an ear-nose-and-throat surgeon versus a childhood-hearing specialist.

Still, there was something disconcerting about the knowledge that we’d blown it — that despite all we knew about dwarfism, that despite how hard we’d worked with Becky and her teachers in trying to keep her up to speed in school, we’d gone years without realizing that she couldn’t hear. At least not as well as she needed to.

***

At the beginning of the fourth grade I met with Becky’s teacher, Kathy Picone, and explained to her that her hearing might be off and that we were having her evaluated for an auditory-processing disorder. The results were encouraging. Becky was put right in front, where she could see Mrs. Picone’s face and hear her without having to strain. Becky is having her best year so far — not perfect, but a huge improvement over her first three years, when she and other kids would be seated around circular tables and would be expected to listen to the teacher even if their back was to her.

At some point we may need to consider an electronic amplification system to boost the sound of the teacher’s voice or possibly even hearing aids, combined with some therapy for her auditory-processing problems.

In retrospect, it all makes sense. When Becky first landed in Mass General, her ears were filled with fluid, yet she was so tiny that Dr. Cunningham couldn’t give her tubes. The fluid stayed there for more than a year before he could perform surgery, the pressure all the while building up behind her eardrums. The only reason she avoided a massive ear infection was that she was given antibiotics as a preventative until Cunningham could operate. No doubt her hearing never fully recovered from that experience. Yet we never figured it out.

For me, the lesson is that when you have a child with a disability, you can’t stop learning, asking questions, or pushing for more and better answers. Becky could very well have started the fourth grade taking Ritalin. And I have no doubt that we would have been impressed by the results. After all, Ritalin is a performance-enhancing drug that helps sharpen anyone’s concentration, regardless of whether ADHD symptoms are present or not. But given that Becky turns out not to have classic ADHD, that doesn’t mean it would have been the right thing to do. Her underlying problem would have been masked, not addressed.

We had thought that Becky’s learning disability had nothing to do with her dwarfism. In fact, it turned out to explain everything. Because of her dwarfism, her eustachian tubes are tiny and do not drain properly. That poor drainage took a slight but permanent toll on her hearing. I have actually seen Internet posts suggesting that there is at least anecdotal evidence of a link between achondroplasia and ADHD. After our long struggle to figure out why Becky couldn’t pay attention, I now wonder whether the real link is between achondroplasia and hearing loss.

This much we know: If we hadn’t take charge, we never would have learned the truth. As Becky enters her teens and heads toward adulthood, she’ll need to learn how to act as her own best advocate. For now, and for the immediate future, that job remains ours.

< Chapter Nine | Contents | Chapter Eleven >
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