'Travelling, side by side, through these villages of grief'

Charlotte Schwartz (above right) holds Isaiah, 4, with husband Seth and Rivers. Isaiah has a rare metabolic disease called Galactosemia, which is associated with speech and motor delays as well as seizures. Isaiah is diagnosed with autism and global developmental delay.

"My husband and I were only married a year before Isaiah was born," she writes. "We had virtually no time to just be us before we had this beautiful baby, and then everything changed again days later when he fell ill."

Here she shares a letter to her husband that reflects "how tremendously challenging having a child with various problems can be as it relates to a marriage." You can follow Charlotte at Running On Borrowed Legs or on Today's Parent: 'I worry my special-needs son is lost in the school system.'

By Charlotte Schwartz

My dearest Seth,

It's time I committed these thoughts to paper.

I feel like we've been on this road much longer than we actually have, don't you? Doesn't it seem like since forever that we've been travelling, side by side, through these villages of grief and hamlets of sorrow?

We're both so irreparably tired that all but a few things have ceased to make sense. Basic concepts are easiest for us, anything more complicated is a challenge we seem all too weak to face. I feel like we love each other, so much still, but we are silent on that subject most of the time, favouring constant action and continual, often circular motion over idling. 

But I remember that there was a time—not so long ago—when our contact amounted to much more than a brushing of cracked, dishpan hands across a sink full of dishes or another e-mail exchange about Isaiah's appointments, therapies, fundraising or schooling. Indeed there was a time when "we" were the sum of our respective parts; complementary pieces in a giant puzzle and people we were proud to be. There was a time when we were both chasing dreams for our individual and collective selves that extended far beyond just getting to the end of each week. 

I remember that not so long ago our lives were more than a game of schedule-checkers—arguing about whose appointment trumps whose commitment when considering Isaiah's scheduled assessments, therapies, school meetings, and life. It was full of promise; of a connectedness I had never known before, of  a will to work hard for one another and to never be satisfied with less than our respective best. But now less is the best we can give. 

There was a time when, just five years ago, we promised to stand by each other through whatever proverbial "thing" may come our way. We said I am my beloved's, and my beloved is mine. 

But things have really shifted, haven't they? Because we belong to these boys now: I belong to my insurmountable sorrow and you belong to that place in your mind that you retreat to so frequently.

We belong to long days and erratic sleep patterns and brains that won't quiet themselves. We belong to the vice-like grip Isaiah's diagnoses have on our lives. Our options, which at one time seemed without limits, have dwindled unexpectedly. Altering the status quo could irretrievably upset the "balance" that we have worked so hard to find, ignoring how damaging that balance is to the concept of "us".

Our boy came into this world just two weeks after our first wedding anniversary; I was 28. I loved you on the day we were married but I loved you again on the day Isaiah was born. You became something new to me—a dad who I knew would do right by his son. A dad who I knew would redefine the term for me and never give up. Always being best, better. 

But a week later we found out he was sick. A rare disease, no less. 

No treatment. No cure.

Questions without answers, nights devoid of sleep, silent screams into oblivion and painfully blank stares that we pierced each other with. In those moments, despite our promises of abundance in love and life, we had nothing to give to the other. Nothing but silence which you needed but which felt like it was slowly infesting my life and weaving throughout my body like a poison.

Five years later, since his arrival, we still find ourselves silent often. My grief has become an immovable fixture; a hurdle over which I cannot leap, a brick wall I cannot scale. It seems it will always be there. 

But as you would, you have dealt with your grief differently; like a scientist. You took your grief and converted it to an energy, a fuel. You composed an orchestral piece comprised of studies and statistics and words so meaningful that they mean nothing to so many people. You have conducted your life despite all of this, while I have voluntarily laid mine to rest. My best years, I tell myself, have come and gone. At 28, the rest of my path was forged and predictable and banished to a balancing act of maintaining composure, of being strong for everyone else, and of slowly falling to pieces on the inside and knowing, inherently, that may never be fixable.

And while I stay strong, I admit that over these last five years I have given up more than a hundred times. I've given up on you. I've given up on Isaiah, on our home, and on myself. I've given up on us, on holidays, and on some of my life's objectives. My immovable grief became so burdensome that I had no choice but to throw in the towel and accept that life had handed me lemons, and that try as I may, I don't really like lemonade.

So it's no wonder that as many as 85 per cent of parents of children with "special needs" divorce, is it? His diagnosis belongs to all four of us and because of it, in many ways, we are forced to live alone, together. 

It is a life that needs two people, and two people who must be happy dividing the mundane and conquering to-do lists. It is a life where progress is so rarely made that when it is, we are cautious and apprehensive. We do not celebrate it because it may not be real.

But as I promised I would on that day we were married, when I give up, I always pick up and start again. My fatigue-driven capitulation is often short-lived and my brand of drive is renewed, if only for a while. It is in those short bursts that I can see your smile on our wedding day. I can see the hands I held at the altar. I can feel the hands on my shoulders when we were dating that were tentative and exciting. But those bursts are so painfully short; the reel breaks and we are thrust back to reality. 

My dearest Seth. I am so sorry that things have turned out this way, though I know I don't have to apologize. Nothing is any one's fault. Not really. But when there is nothing left to say an apology seems an appropriate concession; when we have lost the ability to say the words we would give limbs to hear our boy say one day—I love you. 

I know now that love evolves quickly and adapts to meet changing demands. Our version of love may not play out the way it does for our peers; indeed, it is almost exclusively devoted to the needs of our boy. Our love is expressed in quiet subjugation, in keeping appointments, in sending "How are you?" text messages mid-day when you know the answer will always be "Could be better." Our love's currency is reliability and sameness where all other variables are at frequent risk of changing. And if those things don't constitute love in our circumstances, then I'm afraid I know no other way. 

I want you to know that though we never seem to have moments or opportunities anymore, that in much the same way I did before we were married, I gather my strength in the latest hours of the night when we retire to bed and when, for those few brief moments, you are close enough to me that I can breathe you in. 

It is moments like those that fuel me more than any verbal exchange could; where so much has happened that so many words mean so little. 

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Busted

What do you do if you and your partner disagree on how to handle an issue with your child?

Let's say it's an issue that rankles, so one day you bring it up at a meeting with a social worker you're seeing for your child. And the therapist pretty much sides with your partner and even suggests that it would be helpful for you to get therapy (which you've already had lots of). She asks you if you were to let go of the vigilant worrying you do for your son, what would be left? What would be underneath? And she suggests that maybe it would be grief or maybe it would be something else.

If you're me, you sit on it for a while and do nothing.

Then you ask a friend who's seen the same social worker for her child what she thinks. "You're talking to the wrong person if you think I'll talk you out of therapy," she says. "All I do is therapy!"

Then, because you're so stubborn, you convince your partner that a second therapist, a cognitive-behaviour therapist, should weigh in on the matter. You're pretty sure this therapist's opinion will be more in line with your own.

So off you go. The second therapist suggests that this is more to do with you, your relationship and parenting styles. She isn't willing to criticize your partner's approach. She feels the issue is something you together should keep an eye on, but at this point she isn't red-flagging it and she isn't supporting your version of how to handle it (that hubby follow your precise recommendations).

Which brings you all back to the point that maybe there was something to what therapist number one had to say about you. That maybe the 'problem' isn't outside you, but within you, something that you have to take a closer look at.

Meanwhile, hubby is sitting on the couch, fighting heavy eyelids to stay awake and focused on therapist number two. "She never got to the point," he says afterwards. "I didn't really understand why we were there."

Busted, you think.

I guess you can never have too much therapy.

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Balancing a marriage and kids with special needs

Noor Al-Shaikh (above) and his wife Rita have three children. Gisele, 10, and Sienna, 5, have a rare, non-progressive condition called Juvenile ALS type 2. They can’t walk on their own and use canes, walkers or a wheelchair. Sister Iliana, 7, is not affected.

While challenging, Noor believes raising children with disabilities has strengthened his relationship with Rita.

In this BLOOM clip he shares strategies for keeping a marriage strong. To view this on a full screen, go directly to YouTube.

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We had the same ache in our hearts

We've had guest blogs about the impact of a child’s disabilities or special needs on a marriage. I found a piece I wrote about the different ways that my husband D’Arcy and I reacted to Ben’s genetic condition early on. It can use some work, but I thought it might be of interest to other parents. D'Arcy read the piece and remembered some of these things differently, but was okay with me running it! Louise

We had the same ache in our hearts
By Louise Kinross

I was the bearer of bad news.

As Ben’s primary caregiver, I was typically the one who heard first about new diagnoses. I received the news and stewed about it all day, then regurgitated it the second that D'Arcy walked in the door.

I got my sense of control from becoming an expert on my son’s rare genetic condition and therapeutic treatments. I thought that if I could only learn enough about his special needs and every available medical and alternative treatment, I could ‘fix’ or in some way control his future.

D’Arcy got his sense of control from losing himself in work he loved all day, then coming home and wanting to delight in his son. He kept his anxieties and fears shelved in an unreachable place, protected by a blanket of denial. He wanted to be the happy, easy-going, laid back dad – the party dad who would do anything to make his son happy and would never, ever hurt him, even if something was medically necessary.

When Ben was almost 3, a virus that we all had turned to pneumonia in his right lung. We were used to giving Ben ventolin masks whenever he had a cold – which brought on his asthma and terrible inbreathing. However, this time in Emergency, when D'Arcy and I were left alone to give him the masks, he screamed and fought us off desperately. D'Arcy had to restrain him by holding his arms and hands down with his hands, and his body still with his knee, while I kept the mask on his face. I'm not sure if the medication smelled funny or if perhaps the compressor made a different noise from the one we have at home – but Ben fought to be free of it as if he was suffocating.

I knew it was essential for Ben to have the masks, but D'Arcy's soft spot kicked in.

He began to loosen his grip, letting Ben throw off the mask.

"He needs the mask," I yelled over the whir of the compressor, frantic that we not waste the medicine that was now billowing out aimlessly.

"It's hurting him," D'Arcy yelled back. "Give him a break."

"We are not giving him a break by not treating him," I snapped, and placed the mask firmly back on his face. D'Arcy pulled it off again. I put it back on and then we fought over it like two children: me trying to yank it away while D'Arcy refused to let go.

"XXXX off," I screamed.

Ben, as always, was at the centre of our relationship.

My daughter Lucy, now eight months old, lay behind us, sleeping peacefully in her car seat.

It would have looked comical, if it wasn't so sad.

I felt hopeless.

Feb. 1, 1997

DArcy and I were at each other's throats at the hospital. I am so tired of it. After our talk on Friday I felt some hope, like we could work things out – build a satisfying relationship and family. Now it just seem like we are back in the trenches. I am embarrassed and ashamed that I allowed myself to be mad in front of Ben.

It hurts so much to see Ben going through what he went through today: Being restrained for the mask, then being put in a "trap-like" device to have his chest x-ray. It is torture. I felt like I wanted to die when I watched his desperate screams. I feel so fragile emotionally, like the smallest thing will knock me off my feet.

D’Arcy tended to minimize and downplay any signs that Ben had medical or developmental problems.

I magnified them, carrying on me a yoke of perpetual anxiety, worry and high-alert.

I was the one who did the emotionally-difficult therapies – forcing your child to do things that were hard, frustrating, out of their comfort zone. Being the tough one because I never wanted to feel we hadn't tried everything we possibly could to help Ben.

I was often the one who took over the painful medical interventions because I knew they "had to be done." D'Arcy didn't seem able to do them emotionally.

Things like giving him repeated ventolin masks; drops at night in his highly-sensitive and painful ears (with structural differences that caused severe ear infections, despite eight sets of tubes, he learned as a toddler to go to sleep holding his hands over his ears); watching him fight sedation for medical tests till he began falling over; forcing him to wear a patch over his strong eye; taking his beloved ‘bobo’ – bottle – away from him at just over a year because it might be contributing to his ear infections (wrong).

Oct. 19, 1996

I have such mood swings. At certain times of the day I am feeling positive and happy and at others I feel very alone, isolated, depressed, angry – and a more recent emotion: bitter. It is hard for me to see others starting out in relationships or marriage or getting pregnant and knowing that they will probably never know the pain we have. I know I have to work through this because I DO NOT want to be a bitter person.

I continue to feel alienated from D'Arcy and angry at him. I feel like most of the "special" care for Ben – his physio, eye patch, appointments, all of the research about LGS and his growth problems – falls on me and sometimes it is too much. D'Arcy does do a lot of things with Ben – giving him his medicine, putting him to bed, getting up early in the morning with him. But I wish he would support me more with the daily physio, patch, growth problems and other issues related to Langer-Giedion syndrome. I have been feeling very negative about our relationship and it scares me. It seems like there is too much Ben-related pressure, stress and emotion. We are constantly setting each other off.

When Ben first started eating solids he had numerous choking incidents. Our pediatrician said they were isolated. D’Arcy tended to downplay them because he often wasn’t present when they occurred. We had taken special CPR training but the techniques we were shown – to hold him facing down over a knee and hit his back hard – seemed to make the choking worse. There were calls to 911 and police and fire trucks. I would shake afterwards. But when I called D’Arcy at work, he got so used to this that as I began to recount the latest horrifying incident, he would say simply: “Is he breathing now?” And if I answered yes, he didn’t want to hear more about it. Ben was later diagnosed with an uncoordinated swallow that meant when he swallowed, only some food went down, while the remaining food pooled at the back of his throat.

I went back to work full-time when Ben was 4. Suddenly D'Arcy – who had mornings off as he worked a late shift – was indoctrinated into the world of daily therapies and medical tests. One medical visit stands out.

Ben had hearing aids, but it was almost impossible to get him to wear them because his ears were so painful from infection. I called D’Arcy to ask how the morning appointment with the audiologist went.

"Horrible," he said.

"What happened?"

"She tested him without his hearing aids, and then she insisted we put the aids in. He kept taking them out, to the point that I had to physically hold them in and he was crying and fighting me.”

“Oh Darcy!” I said.

“Then I started to cry,” D’Arcy said. “So she told me I could stop.”

"I'm so sorry," I said. And I knew he had the same ache in his heart.

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When 24-7 caregiving destroys a marriage

The following piece was written in response to our recent posts on the mental-health impacts of parenting kids with disabilities. This story was submitted by a blogger who is known to many of you for her wisdom, compassion and humour. And now -- courage. She wonders if there are others out there like her.

When 24-7 caregiving destroys a marriage
How one woman's world gradually shrank away

I never imagined it could happen to me.

I am educated, self-reliant, and was nurtured in a secure, loving home. I ended up, however, in a psychologically-abusive relationship. Psychological abuse leaves the victim blaming herself and questioning her own perceptions over the behaviour of the abusive partner.

It started when my child had a catastrophic illness that left her with severe disabilities.

Over an 11-year period, I slowly but surely abandoned everything -- family, job, friends -- to care for my child. My spouse could not, or would not, ever do it on his own.

First he insisted that help was required from staff or myself. Then the rule became that there must be two people at home at all times -- staff and myself, or spouse and staff. And when there was no staff, it had to be me and him.

He never went back to work and I wasn't allowed to.

I let go of everything that stressed him out. And stressed he was, with Post Traumatic Stress Disorder. But it was never enough. I could not open a window or it would cause allergies. I could not make a morning coffee until he was watching our child a foot away from the bed.

I could not go out unless I had permission and there was 'enough coverage.' As a result, I haven't been alone in the house for at least nine years. But I believed it was for 'the cause' -- our child -- and that my spouse was an exceptional man for sacrificing so much for her.

It was our child he used to hold me emotionally hostage.

He believed it was only our unwavering hyper-vigilance and constant focus on 'improvement' which kept her alive and well. No staff was good enough, no doctor, no therapist, no school. As my world got smaller, so did my child's. We lived in a room, watching constantly for 'trouble.'

It was through blogging that I came to understand what was happening to me. I became acquainted with a whole world of disability, and caregivers of the severely disabled. I learned how they lived and became acutely aware that something was very wrong in my world.

I got counselling, often in secret. Counselling helps the abused step back cognitively and process the situation, so that she can understand the nature of the relationship and the abuse. It also provides tools to help the victim develop better boundaries so that she can extricate herself from the relationship.

It took me over a year to ask for a divorce. Interestingly, it was my spouse's insistence that we get couple's counselling that reinforced my decision. I became aware of my issues, was able to see where I was off-track in my perceptions, and learned what to do to move ahead. My spouse was shocked that the therapist didn't get me to 'see the error' of my ways.

Now, as I finally plan to leave, child in tow, my partner says I am selfish and am causing our daughter to suffer more, deteriorate and even die.

I will move ahead regardless.

I am on my way out. There is a long road ahead. I will have to deal with my spouse for as long as I have 'our' child. But I have the tools and the growing self-confidence to speak up and move forward in life. In the end, it will benefit not only me, but my beautiful disabled child, who, along with me, will gain a new life.

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‘Walker, my teacher’

I read five chapters of The Boy in the Moon last night – a memoir by journalist Ian Brown about caring for his son Walker, who has a rare genetic condition. Walker, 13, can’t eat or speak, wears diapers, punches his head mercilessly and cries for no known reason for hours.

The book is exquisitely written – a labour of love. Brown describes the relentless physical care, sleep deprivation and inability to understand a child or soothe his pain that can bring parents to their knees. But he also describes the contradictions – the expansive moments of grace and love. “The strange thing was that all this darkness could be relieved by a few pinpoints of light,” Brown writes.

A smile; a “glee spree” when Walker explodes in laughter; their shared language of tongue clicks; or when the boy finally lets go, resting “calm as a pond” on his dad’s chest in the bath, or sinking into sleep against Brown’s body after hours of soothing. “Everyday occurrences for a normal child. But I know their true value," he writes.

I’m delighted to share with you the first chapter from The Boy in the Moon.

One
For the first eight years of Walker's life, every night is the same. The same routine of tiny details, connected in precise order, each mundane, each crucial.

The routine makes the eight years seem long, almost endless, until I try to think about them afterwards, and then eight years evaporate to nothing, because nothing has changed.

Tonight I wake up in the dark to a steady, motorized noise. Something wrong with the water heater. Nnngah. Pause. Nnngah. Nnngah.

But it's not the water heater. It's my boy, Walker, grunting as he punches himself in the head, again and again.

He has done this since before he was two. He was born with an impossibly rare genetic mutation, cardiofaciocutaneous syndrome, a technical name for a mash of symptoms. He is globally delayed and can't speak, so I never know what's wrong. No one does. There are just over a hundred people with CFC around the world. The disorder turns up randomly, a misfire that has no certain cause or roots; doctors call it an orphan syndrome because it seems to come from nowhere.

I count the grunts as I pad my way into his room: one a second. To get him to stop hitting himself, I have to lure him back to sleep, which means taking him downstairs and making him a bottle and bringing him back into bed with me.

That sounds simple enough, doesn' t it? But with Walker, everything is complicated. Because of his syndrome, he can't eat solid food by mouth, or swallow easily. Because he can't eat, he takes in formula through the night via a feeding system. The formula runs along a line from a feedbag and a pump on a metal IV stand, through a hole in Walker's sleeper and into a clever-looking permanent valve in his belly, sometimes known as a G-tube, or mickey. To take him out of bed and down to the kitchen to prepare the bottle that will ease him back to sleep, I have to disconnect the line from the mickey. To do this, I first have to turn off the pump (in the dark, so he doesn't wake up completely) and close the feed line. If I don't clamp the line, the sticky formula pours out onto the bed or the floor (the carpet in Walker's room is pale blue: there are patches that feel like the Gobi Desert under my feet, from all the times I have forgotten). To crimp the tube, I thumb a tiny red plastic roller down a slide. (It's my favourite part of the routine–one thing, at least, is easy, under my control.) I unzip his one-piece sleeper (Walker's small, and grows so slowly he wears the same sleepers for a year and a half at a time), reach inside to unlock the line from the mickey, pull the line out through the hole in his sleeper and hang it on the IV rack that holds the pump and feedbag. Close the mickey, rezip the sleeper. Then I reach in and lift all 45 pounds of Walker from the depths of the crib. He still sleeps in a crib. It's the only way we can keep him in bed at night. He can do a lot of damage on his own.
_

This isn't a list of complaints. There's no point to complaining. As the mother of another CFC child once told me, "You do what you have to do." If anything, that's the easy part. The hard part is trying to answer the questions Walker raises in my mind every time I pick him up. What is the value of a life like his–a life lived in the twilight, and often in pain? What is the cost of his life to those around him? "We spend a million dollars to save them," a doctor said to me not long ago. "But then when they're discharged, we ignore them." We were sitting in her office, and she was crying. When I asked her why, she said "Because I see it all the time."

Sometimes watching Walker is like looking at the moon: you see the face of the man in the moon, yet you know there's actually no man there. But if Walker is so insubstantial, why does he feel so important? What is he trying to show me? All I really want to know is what goes on inside his off-shaped head, in his jumped-up heart. But every time I ask, he somehow persuades me to look into my own.
_

But there is another complication here. Before I can slip downstairs with Walker for a bottle, the bloom of his diaper pillows up around me. He's not toilet-trained. Without a new diaper, he won't fall back to sleep and stop smacking his head and ears. And so we detour from the routine of the feeding tube to the routine of the diaper.

I spin 180 degrees to the battered changing table, wondering, as I do every time, how this will work when he's twenty and I'm sixty. The trick is to pin his arms to keep him from whacking himself. But how do you change a 45-pound boy's brimming diaper while immobilizing both his hands so he doesn't bang his head or (even worse) reach down to scratch his tiny, plum-like but suddenly liberated backside, thereby smearing excrement everywhere? While at the same time immobilizing his feet, because ditto? You can't let your attention wander for a second. All this is done in the dark as well.

But I have my routine. I hold his left hand with my left hand, and tuck his right hand out of commission under my left armpit. I've done it so many times, it's like walking. I keep his heels out of the disaster zone by using my right elbow to stop his knees from bending, and do all the actual nasty business with my right hand. My wife, Johanna, can't manage this alone any longer and sometimes calls me to help her. I am never charming when she does.

And the change itself: a task to be approached with all the delicacy of a munitions expert in a Bond movie defusing an atomic device. The unfolding and positioning of a new nappy; the signature feel of the scratchy Velcro tabs on the soft paper of the nappy, the disbelief that it will ever hold; the immense, surging relief of finally refastening it–we made it! The world is safe again! The reinsertion of his legs into the sleeper.

Now we're ready to head downstairs to make the bottle.

Three flights, taking it in the knees, looking out the landing windows as we go. He's stirring, so I describe the night to him in a low voice. There's no moon tonight and it's damp for November.

In the kitchen, I perform the bottle ritual. The weightless plastic bottle (the third model we tried before we found one that worked, big enough for his not-so-fine motor skills yet light enough for him to hold), the economy-sized vat of Enfamil (whose bulk alone is discouraging, it implies so much), the tricky one-handed titrating of tiny tablespoonfuls of Pablum and oatmeal (he aspirates thin fluids; it took us months to find these exact manageable proportions that produced the exact manageable consistency. I have a head full of these numbers: dosages, warm-up times, the frequency of his bowel movements/scratchings/cries/naps). The nightly pang about the fine film of Pablum dust everywhere: Will we ever again have anything like an ordered life? The second pang, of shame, for having such thoughts in the first place. The rummage in the ever-full blue and white dish drainer (we're always washing something, a pipette or a syringe or a bottle or a medicine measuring cup) for a nipple (but the right nipple, one whose hole I have enlarged into an X, to let the thickened liquid out) and a plastic nipple cap. Pull the nipple into the cap, the satisfying pop as it slips into place. The gonad-shrinking microwave.

Back up three flights. He's still trying to smash his head. Why does he do it? Because he wants to talk, but can't? Because–this is my latest theory–he can't do what he can see other people doing? I'm sure he's aware of his own difference.

Cart him into the bed in his older sister Hayley's room on the third floor where I have been sleeping, so I can be near him. Hayley, meanwhile, is downstairs with her mother in our bedroom so they can get some sleep. We take turns like this, reduced by the boy to bedroom Bedouins. Neither Johanna nor I has slept two full nights in a row in eight years. We both work during the day. After the first six months, I stopped noticing how tired I was: my days and nights simply became more elastic and similar.

Lay him down on the bed. Oh, fuck me dead–forgot the pump! Build a wall of pillows around him so he doesn't escape or fall off the bed while I nip back into the other room. Remember 4 cc's (or is it 6?) of chloral hydrate, prescribed for sleep and to calm his self-mutilation. (I tried a dose once: the kick of a double martini. William S. Burroughs was thrown out of school as a kid for experimenting with it.) Reprogram the pump, restart the familiar mild repetitive whine, his night pulse.

At last I sink into bed beside him and pull the wriggling boy close. He begins to hit his head again, and because we know of no acceptable way to restrain him mechanically, I hold down his small right hand with my large right one. This brings his left hand up to his other ear–"he's a genius for finding ways to hurt himself," his teacher told me the other day. I grab his left in my left, which I have threaded behind his head. He begins to kick himself in the crotch with his right heel, so hard it makes me wince. I run my big leg over his little leg, and lay my right hand (holding his right hand) on his left thigh, to keep it still. He's stronger than he looks. Under his birdy limbs, he's granite. He'll mash his ears to a pulp if no one stops him.

There is a chance, of course, that none of this will work. Every once in a while, the chloral hydrate rebounds and transforms him into a giggling drunk. It's not unusual to have to perform the entire routine again an hour later. When he has a cold (eight, ten times a year), he coughs himself awake every twenty minutes. Sometimes he cries for hours for no reason. There are nights when nothing works, and nights when he is up and at it, laughing and playing and crawling all over me. I don't mind those nights, tired as I am: his sight is poor, but in the dark we're equal, and I know this makes him happy. In the night, there can be stretches when he is no different from any normal lively boy. It makes me almost cry to tell you that.

Tonight is a lucky night: I can feel him slip off after ten minutes. He stops grunting, strokes his bottle, turns his back and jams his bony little ass into my hip, a sure sign. He falls asleep.

I hurry after him. For all this nightly nightmare–the years of desperate worry and illness and chronic sleep deprivation, the havoc he has caused in our lives, threatening our marriage and our finances and our sanity–I long for the moment when he lets his crazy formless body fall asleep against me. For a short while, I feel like a regular little boy's father. Sometimes I think this is his gift to me–parcelled out, to show me how rare and valuable it is. Walker, my teacher, my sweet, sweet, lost and broken boy.
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In the early years, after Walker was first diagnosed with CFC syndrome at the age of seven months, the estimated number of people who suffered from the syndrome changed every time we visited the doctor. The medical profession–at least the handful of doctors who studied cardiofaciocutaneous syndrome, or knew what it was–was learning about the syndrome as we did. The name itself was nothing more than an amalgam of the syndrome's most prominent symptoms: cardio, for ever-present murmurs and malformations and enlargements of the heart; facio, for the facial dysmorphia that was its signal characteristic, a prominent brow and down-sloping eyes; cutaneous, for its many skin irregularities. The first time a geneticist ever described the syndrome to me, he told me there were eight other children in the world with CFC. Eight: it wasn't possible. Surely we had been blasted out to an unknown galaxy.

But within a year, after our doctors had begun to sweep the medical literature for references to CFC, I was informed there were 20 cases, because more had turned up in Italy. Then there were 40. (The speed with which the number changed made me sneer at the doctors: they were trained medical professionals, surely they ought to know more than we did.) More than 100 cases of CFC have been reported since the syndrome was first described publicly in three people in 1979; some estimates are as high as 300. Everything about the syndrome was a mystery, an unknown. It was 1986 before it had a name. Symptoms ranged wildly in severity and kind. (Some researchers believe there may be thousands of people with CFC, but with symptoms so mild the condition has never been noticed.) Some CFC children hit themselves, though most didn't. Some could speak or sign. All but a few were anywhere from mildly to severely retarded. Heart defects ranged from serious to unimportant. (Walker had a mild murmur.) Their skin was often sensitive to touch, to the point of agony. Like many CFC children, Walker couldn't chew or swallow easily; he couldn't speak; his vision and hearing were compromised (he had narrowed optic nerves, one more than the other, and skinny ear canals subject to incessant infection); he was thin and wobbly, "hypotonic" in the medical jargon.

Like virtually all CFC children, he had no eyebrows, sparse curly hair, a prominent brow, wide-set eyes, low-set ears and an often charming cocktail-party personality. The CFC features grew more noticeable, more "abnormal," as he grew older. I assumed my little boy was an average example of the condition. It turned out I was wrong. It turned out the average didn't exist– not here.

Nor did those conditions change. Today, at thirteen, mentally, developmentally– I'm terrified even to write these words–he's somewhere between one and three years old. Physically, he's better off than many CFC children (he doesn't have frequent seizures, doesn't have ulcerated intestines); cognitively, less so. He could live to middle age. Would that be good luck, or bad?

Minus a few new genetic details, this was and still is the sum total of what the medical profession knows about CFC. It isn't widely studied, as autism is. Most parents of CFC children know more about the affliction than their pediatricians. The CFC population isn't large and politically powerful like that of Down syndrome, which more than 350,000 people live with in North America, and which occurs once in every 800 births. CFC shows up no more often than once in every 300,000 births, and possibly as rarely as once in a million. The National Institutes of Health Office of Rare Diseases characterized CFC as "extremely rare," way out at the far, thin end of the statistical branch, alongside bizarre genetic anomalies such as Chédiak—Higashi syndrome, a bleeding disorder caused by platelet dysfunction and white cell abnormalities. There were only two hundred known cases of Chédiak—Higashi, in part because so few born with it ever survived.

Raising Walker was like raising a question mark. I often wanted to tell someone the story, what the adventure felt and smelled and sounded like, what I noticed when I wasn't running through darkness. But who could relate to such a human anomaly, to the rare and exotic corner of existence where we suddenly found ourselves? Eleven years would pass before I met anyone like him.

Excerpted from The Boy in the Moon by Ian Brown Copyright © 2009 by Ian Brown. Excerpted by permission of Random House Canada

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