Where We Going, Daddy?: Life With Two Sons Unlike Any Other Read online

  INTRODUCTION by Fern Kupfer

  Our second child, Zachariah, a much wanted son, looked perfect at birth. Most caesarean section babies do. As an infant, he had big blue eyes with long fringy lashes and downy blond hair that later grew into golden curls. But in the months following his birth, I noticed that he never held up his head; he didn’t quiet when we came into the room and spoke in comforting tones. The tests to determine what was wrong began when he was around six months old and continued until he was more than three years of age. My son’s first few years had passed without his reaching any normal developmental milestones: Zachariah did not hold a spoon, sit up, or say “mama.” I didn’t know it then, but he never would.

  In Iowa, where we live, we get tornados. Once, when Zach was still at home, there were warning sirens for everyone to take cover. It was early evening when the tornado alarm sounded; Zachy was fast asleep, but the wailing sirens woke Gabi, our six year old. My husband found a flashlight, and the three of us stood at the top of the stairs for a moment as I looked at Zach’s closed bedroom door. He was difficult to get to sleep and fretful all the time he was awake unless he was rocked and soothed or taken somewhere in the car. Often I drove him around in the car at five in the morning until it was only me who was crying. “You’re going to take Zach down to the basement with us, aren’t you?” Gabi asked, her eyes wide. Of course, of course.

  It’s natural for parents to love their children, but when you have a severely damaged child whose needs suck up all emotional reserve, whose future will never hold the pleasures of the most ordinary imagination, then love is the least of it. Truth be told, parents of damaged children sometime fantasize about the loss of our child in an instant, painless scenario. We can imagine a tornado tearing off the roof of a house and swooping a sleeping child into a peaceful land of Oz.

  Parents of severely handicapped children do have dark thoughts. Most of the time we do not say them aloud, especially in a society that works to accept differences and sometimes canonizes the parents of “special” children as unselfish, strong, courageous. Americans in particular can be sentimental: our handicapped children are “angels”—sweet and innocent. They’re needy, yes, but so very worth our sacrifices. Well-meaning people occasionally sent me the poem, “God’s Very Special Child,” whose couplets convey the message that we parents were even “chosen” by God:

  And soon they’ll know the privilege given

  In caring for their gift from Heaven.

  Although Americans are sentimental, we are also a practical lot who possess that “can-do” spirit, even toward the most limited of our population. Why else the push to “normalization,” real jobs and independent living? Why else the cheering success of the Special Olympics?

  Sentiment and practicality are not the primary themes of the book you are about to read. The author, Jean-Louis Fournier, is the father of not one, but two, severely handicapped children. Two, we are told on the very first page of Where We Going, Daddy? How can your heart not sink into your shoes? Fournier begins with a letter to his sons, Mathieu and Thomas, a letter in the form of a book that his boys will never be able to read. We see the boys always through Fournier’s eyes. His sons disappoint. They make him feel guilty. As they grow older, they are not lovely to look at. The book is an apology of sorts to his sons for their very existence, for Fournier’s own genetic contribution, which resulted only in “getting you so wrong.”

  Where we going, Daddy? is the question asked over and over and over again. Fournier gets exactly right the mind-numbing boredom of doing the same things and eliciting the same responses from a child who—except for his shoe size—does not grow. He captures perfectly the irritation, envy, and yes even rage that parents of handicapped children sometimes feel toward parents of the “normals”—parents who are ignorant of and oblivious to their own mundane good fortune; parents who share immodestly their children’s accomplishments; or even well-meaning friends who, feeling sympathy, ask misty-eyed, “How are your boys?”

  Fournier, who is also a comedic writer, channels his primal pain through humor. He uses his humor as a weapon, a defense against the pity of strangers or his own frustration. How is a father of not one, but two handicapped children supposed to comport himself? Fournier acknowledges that it takes “good manners just to look gloomy.” He accepts that making fun of his own children and their severe limitations “is my privilege as their father.”

  I remember the private jokes as our privilege, too. “Close your mouth, you look retarded,” Zach’s father used to say, putting a few fingers gently under our son’s chin to stop his tongue thrusts. If we don’t laugh, we cry. Sometimes, we laugh and cry in the very same moment.

  There was a play in the late 1960s that had a run on Broadway and was met with great critical success. The play was called A Day in the Death of Joe Egg and featured a married couple whose life was consumed by the care of their braindamaged daughter, whom they referred to as “Joe Egg.” The actress who played the daughter sat onstage in a wheelchair throughout, making spastic movements. Her dialogue consisted of unintelligible grunts and howls.

  Perhaps because their daughter’s personality was so unformed, her parents made up a capable and complicated persona for her. They might say, “Joe Egg wants to go for a walk in the park” or “Joe Egg thinks you’re being awfully rash.” They were not just speaking for someone who had no language; they were imagining their daughter into a healthy child with normal needs and desires.

  A friend of mine saw this play in New York and told me that the audience response was generally shock followed by scattered, nervous laughter. Many were appalled. Except, that is, for those parents who knew, who said: oh, yes, that’s the way it is. These are the unspoken, universal experiences that Fournier understands so deeply. On a drive, he asks of his boys in the back seat: “How’s the trigonometry going?” What is a father to do but imagine, pretend, and make jokes?

  Where We Going, Daddy?, which won the 2008 Prix Femina, France’s prestigious literary prize, is not the usual tale of inspiration or tell-all confessional. The third child Fournier and his wife (optimistically or recklessly—depending on how you look at it) decided to go ahead with having was born normal and healthy. That daughter, Marie, is absent from the story. Fournier’s marriage dissolves (as did mine to Zachariah’s father), but we do not learn about his married life, and almost nothing is written about the boys’ mother. All of that is, as Fournier says, “another story.” This is not Fournier’s autobiography. It’s a pastiche of emotions, memories, and anecdotes that combine to form a deep and affecting picture of this particular kind of parent/child relationship.

  There is some controversy—there always is, writing about one’s life and interpreting or omitting the lives of others—following the book’s publication in France. Would my ex-husband’s account of our life together with Zachariah differ from my own? Yes, I am sure it would. In my writing classes at a university, I tell my students, this is your tale to tell. Leave out what you will. This is your life, your story. Everyone’s version of family life may be different, but you must interpret the narrative to your own truth. Fournier’s story is not every parent’s story, but it is true and authentic, focused solely on the world he alone has shared with Thomas and Mathieu. This brief book is expressed in such a spare and uncluttered way that it reads almost like a prose poem. It is not a traditional narrative, but rather a series of impressionistic images, beautifully wrought.

  When I think of Mattieu and Thomas, I see them as two tousled little birds. Not eagles or peacocks, but modest birds, sparrows.

>   Their spindly little legs sticking out from under their short navy blue coats. I also remember, from bath time, their mauve transparent skin, like baby birds before they grow feathers …

  The incredible pain and loss is universal for all of us parents, across both the gender and the cultural divide: the desire for what-could-have-been: games we will never play, books we will never share, loves we will never see bloom.

  There is something that comes to all parents who have children like Mathieu and Thomas and my Zachariah. Even the most tough-minded truth-teller has had this longing: the fantasy of our children as whole, perfect. I still have dreams of walking into a room and seeing Zachariah there, smiling and pleased with himself. He looks up brightly as if to say, Where have you been? Often he speaks aloud in the sweetest, softest voice. The voice I imagined he would have if ever he could speak.

  Like Matheiu and Thomas, Zachariah lived in a residential facility, looked after by a wonderful and loving staff of nurses and care-workers. His father and I visited, but eventually Zach was too fragile to be able to come for visits at home. After Zach died, I received letters from people who tried to comfort me by saying that Zach was now an angel in a place where he was set free. In my head I don’t believe that, but in my heart—a mother’s heart—I can see Zachariah as a young man, blond and blue-eyed and so handsome that all the girls turn to look as he runs by.

  Without the brain-damage, the genetic misfortune, the missing enzyme, or added chromosome—who would our children be? Even Fournier, the least sentimental of writers, ponders meeting his sons in an afterlife:

  Will we recognize each other? … I won’t dare ask if you’re still handicapped … Do handicaps even exist in heaven? Maybe you’ll be like everyone else?

  Will we be able to speak man to man, and tell each other things that really matter, things I couldn’t say to you on earth because you didn’t understand French and I couldn’t speak Impish?

  Perhaps in heaven we’ll finally be able to understand each other …

  Who’s to say?

  There are moments when this is not a comfortable book to read; it is not a story of how love and dedication can triumph over extreme adversity. There is no happy ending. But Fournier is honest in revealing the feelings of those of us whose children are irrevocably damaged. He gives permission and voice to these deepest, darkest, and most complicated emotions. And I believe that ultimately, it is only honesty that heals.

  Where We Going, Daddy? bespeaks a fierce and lamenting love. Fournier dares to reveal the searing truth about a grief that has no end. And that, indeed, is a truth that must be told.

  • • •

  FERN KUPFER is the author of the memoir Before and After Zachariah: A Family Story About a Different Kind of Courage.

  Dear Mathieu,

  Dear Thomas,

  When you were little I was sometimes tempted, come Christmas, to give you a book, maybe one of the Tintin books. We could have talked about it together afterward. I know Tintin really well, I’ve read all of them several times.

  I never did it, there wasn’t any point, you couldn’t read. You’ll never be able to read. Right to the end your Christmas presents will always be building bricks and toy cars …

  Now that Mathieu has gone chasing after his ball somewhere we can never help him find it, now that Thomas, who’s still with us, has his head more and more in the clouds, I am going to give you a book. A book I’ve written for you.

  So that you’re not forgotten, and you’re not just a picture on a disability card. So I can write some of the things I never said, perhaps some regrets. I haven’t been a very good father; often I just couldn’t take you, you were difficult to love. The two of you needed the patience of an angel, and I’m no angel.

  To tell you I’m sorry we couldn’t be happy together, and perhaps also to apologize for getting you so wrong.

  We just didn’t get lucky, you and us. It all landed in our laps, it’s what they call bad luck.

  I’m going to stop complaining.

  When people mention handicapped children they put on a solemn expression as if they were talking about some catastrophe. For once I want to try and talk about you with a smile. You’ve made me laugh, and not always involuntarily.

  Thanks to you, I’ve had various advantages over the parents of normal children. I haven’t had to worry about your schoolwork, nor your choice of career. We never had to waver between the arts and the sciences. Didn’t have to fret about what you would do later, we knew very early on what it would be: nothing.

  And, more importantly, for many years I enjoyed the benefits of paying no road tax.1 Thanks to you, I could drive a big American car.

  1. Parents of handicapped children with a permanent disability card used to be exempt from paying any road tax. When the exemption was rescinded in 1991 there was no longer any advantage to having handicapped children.

  From the moment he got into the Camaro, Thomas, aged ten, has kept on asking the same question he always does: “Where we going, Daddy?”

  At first I answer, “We’re going home.”

  A minute later, still just as genuine, he asks the question again—it’s not registering. By the tenth “Where we going, Daddy?” I’ve stopped answering …

  I’m not really sure where we’re going anymore, my poor boy.

  We’re going with the flow. We’re heading straight for a brick wall.

  One handicapped child, then two. Why not three …

  I wasn’t expecting this.

  Where we going, Daddy?

  Let’s take the freeway, against the traffic.

  We’re going to Alaska. We’re going to stroke the bears. We’ll be eaten alive.

  We’re going mushroom-picking. We’re going to pick death caps and make a lovely omelet.

  We’re going to the swimming pool, we’ll dive off the highest board … into the pool that’s been drained.

  We’re going to the seaside. We’re going to Mont-Saint-Michel. We’ll go for a walk on the quicksand. And get sucked down. And go to hell.

  Unperturbed, Thomas keeps it up: “Where we going, Daddy?” Maybe he’ll improve on his record. By the hundredth time it really is a joke. You’re never bored with him; Thomas is master of the running gag.

  Anyone who’s never worried about having an abnormal child, please raise their hand.

  No one raises their hand.

  Everyone thinks about it, just like we think about earthquakes, and the end of the world, the sort of thing that only happens once.

  I had two ends of the world.

  When you look at a newborn baby, you’re full of admiration. It’s so well put together. You look at its hands, count the tiny fingers, note that there are five on each hand, same with the toes: it’s mind-blowing—not four, not six, no, just five. It’s a miracle every time. Not to mention the insides, which are even more complicated.

  Having a child means running a risk … You don’t win every time. But people still keep on having them.

  Every second on this earth a woman brings a child into the world … She really must be found and told to stop, added the comedian.

  I remember the day we went to the convent in Abbeville to introduce Mathieu to Aunt Madeleine, who is a Carmelite nun.

  We were taken to the visiting room, a small, whitewashed space. In the far wall was an opening closed off by a thick curtain. It wasn’t a red curtain like they have in a puppet theater, but a black one. We heard a voice from behind the curtain saying, “Hello, children.”

  It was Aunt Madeleine. She’s in a closed order so she’s not allowed to see us. We talked to her for a while, then she wanted to see Mathieu. She asked us to put the stroller in the opening, and turn to face the wall. Nuns in closed orders are allowed to see young children, not older ones. Then she called the other nuns to come and admire her great-nephew. We heard rustling robes, chuckling and laughter, then the sound of the curtain being drawn back. Next came a concert of superlatives and ticklings and teasing
s for the heavenly babe. “He’s so adorable! Look, Mother Superior, he’s smiling at us, just like a little angel, a little Christ child … !” They came very close to saying how advanced he was for his age.

  To a nun, children are first and foremost the Good Lord’s creations, and are therefore perfect. Everything God makes is perfect. They don’t want to see the failings. And, anyway, this was Mother Superior’s great-nephew. For a moment I felt like turning around and telling them to stop laying it on so thick.

  I didn’t, though. I did the right thing.

  To think Mathieu was being complimented for once …

  I’ll never forget the first doctor who had the courage to tell us that Mathieu was definitely abnormal. His name was Professor Fontaine, it was in Lille. He told us we should be under no illusions. Mathieu was backward, he would always be backward, either way, there was nothing we could do about it, he was handicapped, physically and mentally.

  We didn’t sleep terribly well that night. I remember having nightmares.

  Until then the prognoses had been vague. Mathieu was a slow developer, we had been told it was only physical, there were no mental problems.

  Lots of friends and relatives tried, sometimes clumsily, to reassure us. Every time they saw him they said how amazed they were by the progress he had made. I remember one time telling them that, as far as I was concerned, I was amazed by the progress he hadn’t made. I was looking at other people’s children.

  Mathieu was limp. He couldn’t hold his head up, as if his neck were made of rubber. While other people’s children sat up arrogantly to demand food, Mathieu just lay there. He was never hungry, it took the patience of an angel to feed him, and he often threw up all over the angel.