The Boy in the Moon: A Father's Search for His Disabled Son (15 page)

Eventually having met Emily Santa Cruz and Daniel Hess and others through Brenda Conger’s CFC website, I had the opportunity to meet Brenda Conger herself. When I arrived in Vestal, New York, where Conger and her family live, her son Cliffie was waiting at the door. He looked like a more urbane, less afflicted version of Walker—curly hair and glasses, but slimmer and taller, CFC’s Noel Coward. The family’s Labradors, Henry and Jackson, walloped into the door as I knocked.

“Those dogs’ll wreck you,” Cliffie said, and laughed.

This was my first conversation with someone who had CFC.

Before anything else Cliffie wanted to see photographs of Walker. Then he swayed over to help his mother tenderize the chicken she was cooking for dinner. Mr. Rogers, the host of the famous, glacially paced children’s television show, was on the wide-screen TV in the living room. Cliffie was fifteen at the time—a teenager watching Mr. Rogers. There were little signs like that, just hints. Cliffie was good for ten smacks on the chicken, then had to stop, exhausted. That was when I noticed how slim his arms were, how glancing his attention could be.

He gave me a tour of the house; he seemed to prefer the second floor.

“This is Mummy’s
offish
,” he said of the landing nook where Brenda Conger had changed the CFC landscape.

“This is the new room”—the office his father was adding.

He showed me the bathroom, and the shower, and the shower curtain most of all. “Keep that closed,” he said.

We continued down the hall.

“This is my daughter’s room,” Cliffie said, gesturing.

“Your daughter? You mean your sister.”

“Right.”

He has trouble with his “r”s, and his language did have that occasional pasted-on quality, as if he were reciting from memory, or from a list of possibilities in his head. Parts of his mind were his own; other pieces seemed as if he’d bought them pre-assembled off the showroom floor. Neurologists have described the same feature in the normal mind, the clipin societal set piece—but in Cliffie it was slowed down and you could see how it operated.

His bedroom, his private sanctuary, was festooned with graphics of John Deere tractors, his great obsession: neat, useful, powerful. There was a John Deere tractor rug on the floor, tractor wallpaper, tractor curtains, a tractor bedspread. There were JD tractors on the light switch, his Kleenex box, his wastebasket; a JD tractor at the end of the chain on his ceiling fan.

We walked outside. While Brenda finished making dinner and his father, Cliff, talked to me about the wilderness days of CFC, before anyone knew anything, and about how he taught Cliffie to ski by walking the bunny hill in ski boots for two years before Cliffie felt comfortable enough to try it on skis—while we adults were occupied, Cliffie climbed onto his John Deere tractor, a sit-down, yard-work model. He started the motor. Then he drove the tractor out of its shed and around the yard. When he was done, he backed it, and its hitch-mounted trailer, into the shed. He did this perfectly.

“
I
couldn’t do that,” I said to his father. I suddenly had a mental picture of Walker picking grapes. Maybe Walker could pick grapes!

“He’s a better parallel parker that any eighteen-year-old with a licence,” Cliff said. It had taken him four years to teach his son to drive the tractor. Cliff started by cutting the grass with the boy in his arms.

At 10:47 that night, Brenda roused Cliffie from the TV. “Cliffie, time to go to bed.”

“Mom,” he said. Nothing delayed about that tone. “Why can’t I stay up? I’m a teenager.”

He had the routines of normal life down. Between what he felt and what he had been told to feel was the real boy, still forming. Was that the gift of the CFC child—to be always forming and never formed?

When I came down for breakfast the next morning, Cliff and Cliffie had been up since 7 a.m., making their Sunday omelettes. Cliffie was wearing his SpongeBob SquarePants pyjamas. He shuffled over. Wan wet light was filtering through the window.

“Mr. Bwown, you want mushwooms in yoh omelette?”

“Ian,” I said. “Call me Ian.”

“Ian.” Perfunctory. Names, irrelevant. The moment was all. “You want mushwooms?”

“Are you a mushroom eater?” I asked.

“Yeah.”

“Me too!”

“Yeah!” he fairly shouted. I knew that bang of glee from Walker. “He’s a mushwoom eater!” he called to his father.

Cliffie paused. “What about pickles?”

“No,” I said, “no pickles.”

“Whoa!” He looked at me with new respect, the kind you accord a fellow who stands against the orthodoxies of the age.

“You a pickle man?” I asked.

“Yeah!” Again the grunt of enthusiasm.

Maybe that was why Walker did it too—when he felt we were equals, or at least on the same page.

All we had needed was an interpreter, a boy who spoke both our languages.

A lot of CFC parents, I discovered, lived a lot of their lives on the Internet. They met through CFC International, Brenda Conger’s online chat room, or listserv. Parents with a new CFC baby burst into the chat room like travellers staggering into an oasis after years in the desert. They signed off as if they were saying goodbye to longlost siblings:

All our love
Wife to Malcolm Mam to Lewis 9 James 7 Amy 4
CFC confirmed

And they always signed off the same way. “Confirmed” meant confirmed genetically, the
ne plus ultra
of CFC status. If you were confirmed—a genetic test for CFC had become available after the spring of 2006—your DNA could be included in research studies. Parents longed for the confirmation. Some children had been clinically diagnosed as having the similar-featured Costello syndrome or Noonan syndrome, but were then revealed, genetically, to be CFC; others who had been clinically diagnosed as CFC were re-diagnosed as having Noonan or Costello syndromes. (There is a faction of geneticists who believe that CFC and Costello syndromes are not separate syndromes at all, but merely variants of Noonan syndrome, which is more widespread.) Conger never kicked any of the children who were re-diagnosed as non-CFC out of her network, but the news was often devastating to their parents.

Walker was five before CFC International existed online. By the time he was ten, parents of children with CFC had created an online community. Monitoring letters on the CFC listserv over the course of several years was like watching a small town coalesce out of a galaxy of darkness—a light would blink on, and then another and another, and slowly, very slowly, the lights became a village. Cases of CFC began to turn up in other parts of the world—in Australia and Lebanon and Holland, a second case in British Columbia, even a second in Toronto.

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
.