by Ian Brown
The CFC listserv read like a vast epistolary novel. Newcomers would burst on the scene, teeming with intimacies and information; the old-timers welcomed them with reassuring arms. What no one mentioned was how similar the stories sounded, and how the complaints had remained the same for years, without remedy—the troubling quirks that new parents had been assured by doctors would go away, but which the rest of us knew likely would not. I remember a woman named Kate describing with passion the attributes of her little boy, an eight-year-old who had only just been confirmed with CFC. “He cannot talk and I have no idea if he will but he does get across in his own way what he wants,” she wrote. “He gets very frustrated sometimes and bites his hands or bangs his head. He is such a character and has brought such joy into our lives. But to be honest there are times I so wish I could just be his mummy and not a nurse/carer as well, I don’t begrudge anything that will help his life be easier but it has been hard sometimes.”
The problem, as any experienced CFC parent reading her letter knew, was that there wasn’t anything that could make his life much easier.
Reading the listserv inevitably led to comparisons, and comparisons were never a good idea. Sara and Chris, a couple in Massachusetts, had a daughter named Regan. She was two and a half years old.
Regan signs and speaks. I think she said “ice cream” tonight, although she would never try to eat it. She is a picky eater but is slowly broadening her tastes. She points to our plates and says “MMMMMM” but refuses most of what we offer her…. Regan is developmentally delayed and her gross motor skills are much more behind than her communication and fine motor skills. She cannot walk or get into a sitting position yet but she tolerates standing, scoots on her behind and just recently can pull herself from a sit to stand position
Was it better to be Regan, who is a better communicator, or Walker, who is a better mover? It was impossible not to ask yourself that question, and impossible to answer. The United States was pushing hard to establish compulsory state early intervention programs for any child as young as three months old who displayed a need for them. No such program had existed when Walker was a baby, and they are still rare in many parts of Canada. British Columbia was ahead of the game where custom-designed living arrangements were concerned; Ontario was very good about providing respite care. What did not exist was a consistent, reliable, guaranteed, easily accessed program of help and care for congenitally disabled children. It was hard not to conclude that the non-disabled world wanted to forget about these children, or at least not be reminded of them.
Some parents came late to CFC International after years of thinking their children suffered from other syndromes. They were often the most complicated cases, with cross-indicating symptoms. As a result, reading the listserv you never knew when you’d happen upon something completely new to worry about. There were dramas within dramas. A woman named Renée was caught in a hurricane in New Orleans in the fall of 2008 while her daughter Harley, who had CFC, fought for her life in hospital. Renée sent updates over the Web as if Harley belonged to everyone:
Hey my family. I have a few minutes to type this time. I am not for sure if I mentioned it, but the nurses from our hospice came out and in Harley’s left lung, the only air being exchanged is what the bipap machine is pushing in…. The hospice nurses said she could go tonight, it could be 4 or 5 days, and then again Harley could do like all the other times and beat this, but they don’t seem to think she will. Harley is in really bad shape. Keep her and us in y’all’s thoughts and prayers. God Bless!!!!
Harley eventually died, in March of 2009. Parents of other CFC children wrote in to Conger’s website for weeks afterwards, to praise her struggle and honour her memory. Like them, I never met Harley, but I knew a lot about her. She was another member of my son’s other family.
Then there was the daily bread of the listserv, the habitual discussions of ear canals and earwax, feeding issues, sodium levels, seizure medications, the trials of puberty and the pros and cons of delaying it through hormone therapy, the prevalence of complicating autism within the CFC spectrum (low, but increasing), G-tubes, who could walk and who couldn’t and what could be done about it, who could speak and who couldn’t (ditto), who had hair and who didn’t, who liked to be naked and who didn’t, how to keep the kids occupied, and what might possibly make them sleep. Some mothers, such as Amy Hess, knew more than any doctor, and were widely consulted for medical and technical help. Hirschsprung’s disease, a congenital condition of the bowel, made infrequent but harrowing appearances: a section of the large bowel was aganglionic (that is, the bowel lacked the normal enteric nerves that help a bowel movement along), which in turn resulted in a bowel obstruction, which in turn created a permanently swollen bowel known as megacolon. It sounded like an amusement ride and shared some of its terrifying qualities. Word for word, bowel movements and eating disorders were the most frequently discussed topics, along with the names of anti-constipation remedies, MiraLAX and Kristalose and Dulcolax, their brand names light and wondrous, like a family of famous singing sisters.
Occasionally there were bright bursts of insight. When a mother named Roseanna in Colorado admitted to despair and shame over wishing her child was normal, another mother, Stacey, replied with clarity and compassion:
I understand, as all CFC parents do, the challenges of our special kids. I think the hardest thing for me was giving up the dream of the typical family. Logan wasn’t diagnosed until he was 5 and for the first 2 years I kept thinking “well after we fix THIS he’ll be normal, after we fix THIS he’ll be normal” and kept clinging to the hope that he was going to be like everyone else’s children. It would upset me when I heard other new moms complaining about things I could only dream and hope for (eating everything in site, being fat babies, starting to run everywhere etc.). And I was OBSESSED when figuring out what was wrong with him on my own. I had a child that needed multiple surgeries, wouldn’t eat, threw up EVERYTHING up to five times a day, and no doctor would really listen to me or understand what I was going through. At first they felt I wasn’t trying hard enough. Then, one day when he was 2 years old I realized I was so obsessed with finding his problem and fighting this battle myself that I wasn’t enjoying him … because I was so heartbroken over my dream of “normal” [being] crushed. So, from that point on I accepted Logan as Logan, and I didn’t think about what he should or could be doing but what he WAS doing. Though there are hard days and challenges, there are many GOOD days and now this life for me is normal. I promise it will get easier.
Good luck and I will be thinking of you and your family, Stacey
Regular contributors came and went as the health of their children fluctuated—and it fluctuated with alarming frequency, in everyone’s case. Some letters foamed over with bossiness and displaced panic. There was a generally observed reluctance to complain or despair—the “woe-is-me school,” as hardline CFC moms called habitual complainers, rejecting complaining as futile and self-indulgent. At the same time there was a lot of religion in the mix: a day rarely passed without someone thanking the Lord for the hidden “blessings” of having a CFC “angel,” without someone else insisting that God “gives special children to special parents.”
I understood that impulse: Walker had given my life shape, possibly even meaning. But Walker had also made our lives hell. On the hellish days the mawkish sermonizing about angels and specialness felt like rank self-delusion, the work of anxious cheerleaders desperate to justify themselves to a cynical high school. Disability is no different from politics or even college football: it divides and politicizes people according to their need, simplifying dark and unanswerable experience into a dependable, reassuring stance. But the details of Walker’s life belied any certain path.
Johanna had been in touch with Brenda Conger’s CFC network early on, before the Internet existed. But she was impatient then for specific advice, for skin creams and therapies that would help right away. “It seemed to be a lot about Jesus and angels
and thinking of the kids as gifts from God,” she told me years later. It was hard to think of Walker as a gift from God, unless God was a sadist who bore a little boy a grudge. After that Johanna stayed away from the network, and we coped on our own.
Lana Phillips was the mother of Jaime Phillips, one of the first five people identified as having CFC back in 1986. By then Jaime was ten years old. Lana dealt with Jaime’s bent and broken self for nearly twenty-five years before there was an Internet, or any CFC network of any real note—and that was near Wendell, Idaho, which is not exactly the centre of the medical universe.
I met Lana over the telephone: she had a clean, clear voice like something outdoors on a fresh day. Lana was grateful that Jaime was even alive. The doctors realized something was wrong from the moment the child was born, but no one knew what. She wouldn’t eat. A neighbour suggested goat’s milk and yams—both easily digested by finicky children, or so the neighbour said—so Lana bought a goat and milked it and boiled up massive batches of yams. To her surprise, the diet worked, and Jaime grew stronger. Getting Jaime to talk was less successful. Lana and her husband Mike, who owned his own insurance agency, drove to Los Angeles to have Jaime examined at one of UCLA’s medical centres; the doctors there suggested they take her to see Dr. John Opitz, the famous geneticist from Wisconsin. When he examined Jaime a few months later, he told the other doctors present they would likely never see another case like Jaime’s in their lives.
Two years passed before Opitz and his team of colleagues published their groundbreaking scientific paper naming CFC as a new and distinct syndrome. The day Lana read that paper was the first time she had ever seen a picture of another child with CFC. Lana had the idea that the publication of the scientific paper would unleash a flood of undocumented cases of CFC, and that the scientists would put her in touch with other CFC parents, and vice versa. She even gave them written consent to share her name and address. But nothing happened. The geneticists kept the information to themselves—for reasons of patient confidentiality. When you have a child with something as rare and unknown as CFC, the last thing you want is confidentiality. You want all the help you can get. But this is a measure of how segregated life with a rare syndrome can make you.
For four years, Lana heard nothing. It was as if the syndrome had been named and then dropped down a mine shaft. So she did the only thing she could do: she spent hours rereading the published report and inspecting the same pictures over and over again. Her own daughter seemed to have the severest symptoms, and Lana worried that she hadn’t heard from anyone because no one wanted to meet Jaime.
By the time Jaime turned fourteen, Lana had gone to work for Head Start, a national education program for children from unstable and underprivileged backgrounds. She worked out of the local public school. One day word came down from the office that a new child would be joining her class. The new kid hadn’t started walking until she was four—just like Jaime.
A couple of days later, Lana met the new girl. “When that child walked into our classroom I could not believe my eyes,” Lana told me. “I immediately thought to myself, if I were a geneticist, I would say that this child has Jaime’s syndrome, this child has CFC.” As soon as she could, Lana contacted the girl’s mother, and sure enough, she too had been diagnosed with CFC—by the same pediatrician who had diagnosed Jaime. He just hadn’t thought to pass the information along to Lana. Instead, in a fluke of unimaginable proportions (there is no statistically significant geographic pattern to the occurrence of CFC), in as close to a geographically remote place as you can get in the United States, a CFC child walked into the classroom of a woman who had the only other CFC child for thousands of miles. Lana figured that had to be something like a miracle, statistical or otherwise.
For Lana the encounter was a huge relief. “There is something powerful and satisfying about knowing why your child is the way they are and being connected with other families who have a child like yours,” Lana explained. Still, the new child was much more developmentally advanced than Jaime, and Lana was afraid her mother would be upset meeting Jaime, a much older and more severely challenged person, a portent of the future.
As it turned out, the other CFC mother never expressed any desire to stay in touch, and the family soon moved away. “But I got to work with the child,” Lana told me, “and I thought, this is a real syndrome.”
By the time Jaime was eleven, she was too much for Lana and her husband to look after (especially alongside their three other children), and she went to live in one of the top group homes in the United States, in Idaho. “That was the most dramatic, the most difficult thing I have ever done,” Lana said. “There was this hole in my heart. And I think that was part of the difficulty I had when I thought about reconnecting with the CFC community.” It was a steady reminder that other parents lived with their CFC children, could handle their CFC traits.
Jaime lived in the group home for nineteen years, until she turned thirty. She saw her parents every weekend, though they lived a three-hour drive away. A year before I spoke to Lana, however, Jaime became sick—a complicated mix of septic pneumonia and lymphoedema that left her close to death for four months in an intensive care unit. When she finally recovered, Lana and Mike—by then sixty-one and sixty-two years old respectively—took her out of the group home and brought her back home to live with them, with the help of a pair of full-time caregivers paid for by the state and proceeds from Mike’s insurance business. “In the intensive care ward, it was almost like looking at a stranger, and I guess I didn’t like that feeling,” Lana explained. She wanted to protect her daughter. In the ICU Jaime was fed enough metabolized morphine to put a 225-pound man under for an entire day—except that in Jaime it wore off in two hours, whereupon she’d rip her IV lines out. She was four foot nine and weighed ninety-six pounds. She couldn’t speak and she was only half trained on the toilet, but she had a will of granite.
Jaime’s return after almost two decades in a group home had given Lana a new outlook. “I live my life less from fear now,” she told me. Now that Jaime is home day and night, Mike and Lana have realized that she understands more than they thought she did. She has favourite signs for her favourite words, shoes and more. No one knows why: those just seem to be the most rewarding concepts in her unusual life, something she puts on every day, something she desires. “She got so many results from that sign, more!” Lana said. Jaime—who has the “mentality,” as Lana calls it, of someone eighteen months to two years old—loves men. “At church she’ll see some good-looking young man she likes, or some older man, and she’ll run up to him and grab his arm and giggle.” Jaime was thirty-three years old when her mother told me that story.
But Lana doesn’t mind. “I just feel that I am becoming the person I’ve always wanted to be in life,” she said. “I work with small children, I have learned patience, and empathy, to reach out for people no matter what they look like. And that has all been because of Jaime.” She thought for a bit then, and went on. She’s a devout Mormon, and had been talking about what Mormons call “the eternities,” about heaven and God’s justice. “Someday she’s going to have a perfect body and a perfect mind.”
Who wouldn’t want to believe that? Jaime, a grown woman with an infant’s mind, had changed Lana’s life even as she went on blithely living her own. And that change had started, Lana remembered, the day another child with CFC walked into her classroom. “For me,” she insisted, “that meeting filled a void.”
As a fairly conventional atheist, I wasn’t comfortable with the idea of eternity and words such as miracle. But they seemed to perform an important role in the lives of a lot of people who cared for children with disabilities. The possibility that their lives had been touched by God’s grace was at least one way to make sense of the otherwise senseless burden they carried.
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I tended to phone parents who had CFC children in the afternoon: I needed to work up to it as the day wore on, to shore up my courage. I was afrai
d of what I would learn—that this child was luckier than Walker; that these parents had been more dedicated. And yet that never happened. No one was luckier. If someone had an advantage in this strange world of the severely disabled, they had lost something somewhere else. Delusions were rare: these parents’ circumstances were stark, but they were clear, and clear had a rare attraction.
So I phoned them, or sometimes travelled to meet them, and they would tell me the story of their lives. They told me the most remarkable things.
Shelly Greenhaw lived in Oklahoma City, and had one of those great wide-open Oklahoma accents. She was the mother of a five-year-old girl with CFC, Kinley, and a four-year-old, Kamden, who had what looked to Shelly to be an autism spectrum disorder. The thought of having two disabled children staggered me, but Shelly was a surprising person in a lot of ways. She’d played varsity softball in college (“I started out in left field, but by junior year I was a catcher”), and had also been Miss Congeniality in the 1995 Miss Teen America pageant, which she’d entered as a lark. After college she went to work for a pharmaceutical supply company, for whom she was still working as a salesperson. She wasn’t the sort of person I expected to find as the mother of a disabled child.
“How do you do it?” I asked. “With two girls like this?” “I guess sometimes I don’t feel like I have a choice.” She’d seen kids in worse shape, too, and felt she was lucky that she had “a walker and a talker.” She was a Christian and that helped, she said. Then she admitted she had her dark days too; that they were inseparable from the good ones.
“I do know they have brought a lot of joy into our lives,” she said. “I do know they’re complete little people inside. I really believe that they’re not a genetic mistake. Maybe they are mistakes in our minds, sometimes, because of the artificial boundaries we human beings create. But I believe that we all have genetic mutations, they’re just not obvious in our clinical presentation. Having the girls has changed the way I live my life. Changed the way I communicate, changed the way I treat people.” She appreciated these changes. “Life doesn’t scare me any more,” she said. “I don’t fear the unknown.” She told me that when she met someone in a wheelchair in a mall now, she wanted to run up and embrace them. “I know I’m in this for the long haul. It really is a value that a lot of people don’t get to appreciate.”