If a child being born is a miracle, then a handicapped child is an inverted miracle.
Poor Mathieu couldn’t see very clearly, he had fragile bones and in-turned feet, he soon became hunchbacked, he had thick shaggy hair, he wasn’t beautiful and, more than anything else, he was sad. It was hard to make him laugh, he kept repeating a monotonous lament of “Oh dear, Mathieu … oh dear, oh dear, Mathieu …” Sometimes he was convulsed with heartbreaking tears, as if he couldn’t bear not being able to tell us anything. We always felt he was aware of his situation. He must have thought, “If only I’d known, I wouldn’t have come.”
We would have loved to protect him from this fate bearing down on him. The worst of it was there was nothing we could do. We couldn’t even console him, or tell him we loved him just the way he was: they’d told us he was deaf.
To think that I’m the author of his days, of the dreadful days he spent here on earth, that I’m the one who brought him here, I want to ask his forgiveness.
How do you recognize an abnormal child?
He looks out of focus, distorted.
As if you were seeing him through frosted glass.
There isn’t any frosted glass.
He’ll never be right.
Life isn’t much fun for an abnormal child. It all goes wrong right from the start.
The first time he opens his eyes he sees two faces leaning over his crib looking at him, absolutely stunned. His mother and father. They’re thinking, “Did we make that?” … and they don’t look too proud.
Sometimes they yell at each other and foist the blame on each other. They trawl back through the family tree to find a great-grandfather or an alcoholic old uncle perching in its branches.
In some cases they split up.
Mathieu often makes “brmm, brmm” noises. He thinks he’s a car. The worst thing is when he does the whole twenty-four hours of Le Mans. Driving right through the night without any pit stops.
I’ve tried several times to tell him to cut the engine, without success. It’s impossible to reason with him.
I can’t get to sleep. I have to get up early tomorrow. Sometimes terrible ideas come into my head; I feel like throwing him out the window, but we’re on the ground floor, there wouldn’t be any point, we’d still hear him.
I take comfort from the fact that normal children stop their parents sleeping too.
Serves them right.
Mathieu can’t sit up. He has poor muscle tone, he’s as limp as a rag doll. How’s he going to develop? What will he be like when he’s bigger? Will he need a stake like a sapling?
I used to think he could be a mechanic. But the lying down sort. The ones who work on the undersides of cars in garages where they don’t have a hydraulic ramp.
Mathieu doesn’t have many distractions. He doesn’t watch television, he doesn’t need its help to be mentally handicapped. There’s only one thing that seems to make him slightly happy, and that’s music. When he hears music he beats his ball like a drum, in time.
His ball plays a very important part in his life. He spends all his time throwing it in places he knows he can’t get it back on his own. Then he comes to find us and takes us by the hand to the place he’s thrown it. We get the ball back and give it to him. Five minutes later he’s back looking for us, he’s thrown the ball again. He’s quite capable of repeating the performance dozens of times a day.
It’s probably the only way he’s found to make a connection with us, to get us to hold his hand.
Now Mathieu’s gone to look for his ball all by himself. He’s thrown it too far. In a place where we can’t help him get it back …
It was nearly summer. The trees were full of blossom. My wife was expecting a second baby, life was beautiful. He was due to be born just as the apricots ripened. We waited impatiently, and a little anxiously.
My wife must have been worried. To avoid upsetting me, she didn’t dare say so. But I did. I just couldn’t keep my fears to myself, I had to share them. I couldn’t help myself. I remember telling her with my usual tact, “Imagine if this one’s abnormal too.” I wasn’t just trying to make conversation, more reassuring myself and warding off bad luck.
I definitely thought it couldn’t happen a second time. I know those who love us most are best equipped to hurt us, but I don’t think God loves me that much; I’m not that self-centered.
With Mathieu, it must have been an accident, and accidents don’t happen twice; as a general rule, they’re not repeated.
They say terrible things happen to people who least expect them, who never think of them. So, to make sure it didn’t happen, we thought about it …
When Thomas is born he’s gorgeous, blond with dark, dark eyes, an alert expression, always smiling. I’ll never forget how happy I was.
He’s beautifully crafted, a precious fragile thing. With his blond hair, he looks like a little Botticelli angel. I can’t stop taking him in my arms, tickling him, playing with him, making him laugh.
I remember confiding to my friends that I could now see what it felt like having a normal child.
I’ve been too hasty with my optimism. Thomas is sickly, he’s often ill, he’s had to be hospitalized several times.
One day our family doctor has the courage to tell us the truth. Thomas is handicapped too, like his brother.
Thomas was born two years after Mathieu.
Everything’s falling in line, Thomas will get more and more like his brother. It’s my second end of the world.
Fate has been heavy-handed with me.
Even the corniest tearjerker TV film trying to make its hero heartbreaking wouldn’t dare put something like that in the script, for fear of overdoing it, not being taken seriously and, ultimately, making people laugh.
Providence gave me the title role of the model father.
Do I look the part?
Will I be a good model?
Will I make people cry … or laugh?
“Where we going, Daddy?”
“We’re going to Lourdes.”
Thomas starts laughing, as if he understands.
With the help of a charity-worker, my grandmother has been trying to persuade me to go to Lourdes with my two boys. She wants to pay for the trip. She’s hoping for a miracle.
It’s a long way to Lourdes, twelve hours on the train with two kids you can’t reason with.
They’ll be better behaved on the way back, Granny said. She didn’t dare say “after the miracle.”
Anyway, there won’t be any miracle. If, as I’ve heard say, handicapped children are a punishment from heaven, I can’t really see the Blessed Virgin getting involved by performing a miracle. Surely she won’t want to intervene on a decision made by a higher authority.
And when we get there, with the crowds, the processions, the darkness, I could lose them and never find them again.
Could that be the miracle, then?
When you have handicapped children you have to cope—on top of everything else—with quite a lot of inanities from other people.
There are those who think you deserve it. Someone who meant well told me the story of the young seminarian: he was about to be ordained as a priest when he met a girl and fell hopelessly in love with her. He left the seminary and got married. They had a child, and he was handicapped. It served them right.
There are those who say that having a handicapped child isn’t a chance occurrence. “It’s your father’s fault …”
Last night I dreamed I met my father in a bistro, and introduced him to my children. He never met them, he died before they were born.
“Hey, Dad, look.”
“Who are they?”
“They’re your grandchildren, what do you think?”
“Not great.”
“It’s your fault.”
“What are you talking about?”
“It’s the absinthe. You know what they say, if the parents drink …”
He turned his back on me and ordered another absinthe.
&
nbsp; There are those who say, “I would have smothered him at birth, like a cat.” They don’t have any imagination. You can tell they’ve never smothered a cat.
First of all, when a child is born, unless he has a physical deformity, you can’t necessarily tell if he’s handicapped. When my children were babies they were very like other babies. They couldn’t feed themselves, like them; couldn’t speak, like them; couldn’t walk, like them; they sometimes smiled, especially Thomas. Mathieu smiled less …
When you have a handicapped child, you don’t find out straightaway. It’s like a surprise.
There are also those who say, “A handicapped child is a gift from God.” And they don’t mean it as a joke. It’s rarely people who have handicapped children themselves.
When you’re given this gift you feel like telling God, “Oh! you shouldn’t have …”
When Thomas was born he was given a beautiful gift: a silver set of a tumbler, a bowl, and a baby’s spoon. There are little embossed scallop shells on the spoon handle and around the rim of the bowl. He was given them by his godfather, the chief executive of a bank, who was one of our closest friends.
When Thomas grew, and his handicap very soon became obvious, he never had another present from his godfather.
If he’d been normal, I’m sure he would have gone on to have a lovely pen with a golden nib, then a tennis racket, a camera … But, because he didn’t fit in, he was no longer entitled to anything. You can’t really blame his godfather, it’s a normal reaction. He must have thought, “Mother nature hasn’t given him much, there’s no reason why I should.” The child wouldn’t have known what to do with them, anyway.
I’ve still got that bowl, I use it as an ashtray. Thomas and Mathieu don’t smoke, though; they wouldn’t know how to, they’re on drugs instead.
We give them tranquilizers to keep them quiet.
The father of a handicapped child is supposed to look gloomy. He has to bear his cross with a mask of pain. No way can he wear a red nose to get a laugh. He’s lost the right to laugh, that would be the height of bad taste. If he has two handicapped children, the whole problem is multiplied by two; he has to look twice as unhappy, it’s just good manners.
My manners have often let me down. I remember one time asking for an appointment with the head consultant at the special school Mathieu and Thomas attended. I confided my concerns to him: I sometimes wondered whether Thomas and Mathieu were completely normal …
He didn’t think it was funny.
He was right, it wasn’t funny. He didn’t realize it was the only way I could think of to keep my head above water.
Like Cyrano de Bergerac who decided to make fun of his own nose, I make fun of my own children. It’s my privilege as their father.
As the father of two handicapped children I was invited to take part in a television program to give a firsthand account.
I talked about my children, underlining the fact that they often made me laugh with the stupid things they did, and saying we shouldn’t deprive handicapped children of the luxury of making us laugh.
When a child splatters his chocolate pudding all over his face, everyone laughs; if it’s a handicapped child no one laughs. He’ll never make anyone laugh, he’ll never see laughing faces looking at him, apart from a few assholes laughing at him.
I watched the program, which was pre-recorded.
They’d cut out anything to do with laughter.
The producers felt they had to take parents’ feelings into account. They might be shocked.
Thomas is trying to get dressed by himself. He’s already put on his shirt, but doesn’t know how to button it. He’s now putting on his sweater. There’s a hole in his sweater and he’s chosen the difficult route: he’s come up with the idea of putting it on, not by pushing his head through the collar, but through the hole. It’s not easy, the hole can only be five centimeters across. It takes a long time. He can see we’re watching and starting to laugh. With every attempt, he makes the hole a little bigger, but he doesn’t give up, he goes at it with more determination the more he sees us laugh. After a good ten minutes he succeeds. His beaming face emerges from the sweater, through the hole.
The sketch was over. We felt like clapping.
It was nearly Christmas and I was in a toy shop. One of the salesmen was determined to help me even though I hadn’t asked.
“How old are the children you’re buying for?”
I unwisely gave an honest answer. Mathieu was eleven and Thomas nine.
For Mathieu the salesman suggested scientific games. I remember a boxed set for building your own radio receiver, it included a soldering iron and masses of electrical wires. And for Thomas a jigsaw puzzle of a map of France, with all the regions and names of cities cut out so you had to put them in the right place. I briefly pictured a radio assembled by Mathieu and a map of France put together by Thomas, with Strasbourg on the shores of the Mediterranean, Brest in the Auvergne, and Marseilles in the Ardennes.
He also suggested The Young Chemist set with which you could do experiments at home, making fires and explosions in all sorts of colors. How about The Young Kamikaze with his belt of explosives to sort the problem out once and for all …
I listened to the salesman’s recommendations very patiently, thanked him, and then made up my mind. As I did every year, I took a box of building blocks for Mathieu and some toy cars for Thomas. The salesman didn’t understand, he gift wrapped both presents without a word, then watched me leave with my two parcels. As I went out I saw him making a gesture for the benefit of his colleague, he was pointing his finger at his temple as if to say, “He’s cuckoo …”
Thomas and Mathieu have never believed in Santa Claus, or in the baby Jesus. And why should they. They’ve never written to Santa to ask for anything, and they’re in a good position to know that the baby Jesus doesn’t give anyone any presents. Or, if he did, not ones you could trust.
We haven’t had to lie to them. We haven’t had to sneak off to buy their building blocks and toy cars, we haven’t had to pretend.
We’ve never had a crèche or a Christmas tree.
There haven’t been any candles, for fear of fires.
Or children’s faces filled with wonder.
Christmas is just another day. The heavenly babe hasn’t yet been born.
Some efforts are now made to integrate handicapped people into the job market. Companies who hire them are entitled to tax relief and lower charges. What a great initiative. I know a small country restaurant where two young men with slight learning difficulties are employed as waiters, and they’re rather touching, they serve you so utterly willingly, but you have to be careful and avoid dishes with sauces … or make sure you’re wearing oilskins.
I can’t help picturing Mathieu and Thomas on the job market.
Mathieu, who often goes “brmm, brmm,” could be a long-distance truck driver, hurtling across Europe at the wheel of a tractor-trailer weighing several tons, its windshield cluttered with teddy bears.
Thomas, who likes playing with toy planes and tidying them away in boxes, could be an air-traffic controller, he’d be responsible for bringing jumbos in to land.
Aren’t you ashamed, Jean-Louis, you of all people, their own father, making fun of two little kids who can’t even defend themselves?
No. It doesn’t mean I don’t have any feelings.
For a time we had a live-in nanny to look after the children. Her name was Josée, she was from the north, a blonde with a ruddy complexion, a sturdy girl who looked like a farmer’s wife. She had worked for a number of distinguished families on the outskirts of Lille. She asked us to buy a bell to call for her. I remember her wanting to know where we kept the silver. In her previous job she used to clean the silver once a week. My wife told her we kept it in our house in the country, but one day Josée came there and, of course, there was no silver …
She was perfect with the children, full of common sense. She treated them like normal children,
not too weak or excessively affectionate, she knew how to be tough with them when she had to. I think she really loved them. When they did something silly I often heard her say, “Oh, your heads are full of straw!”
That’s the only accurate diagnosis anyone’s ever made. She was right, Josée was right, they must have had heads full of straw. The doctors didn’t even spot that.
Our family photo album is flat as a fillet of sole. We don’t have many pictures of them, we don’t feel like showing them off. Normal children are photographed from every angle, in every pose, on every occasion; you see them blowing out their first candle, taking their first steps, having their first bath. People look at them and go “ah.” They follow their progress step by step. With a handicapped child, no one really feels like following their fall.
When I look at the few pictures we have of Mathieu, I have to admit he’s not beautiful, you could tell he was abnormal. We, his parents, couldn’t see it at the time. To us he even seemed beautiful, he was the first. Anyway, everyone always says “a beautiful baby.” Babies have no right to be ugly, or at least, no one has any right to say so.
I have one picture of Thomas that I really like. He must be about three. I’ve positioned him inside a huge fireplace, sitting in a little armchair among the ashes, between the andirons, where you would light the fire. Where you would expect to see the devil, there’s a fragile cherub, smiling.
This year some friends sent me a Christmas card of themselves surrounded by their children. They all look happy, they’re all laughing. It’s a picture that would be very difficult for us to create. For a start, you would have to make Thomas and Mathieu laugh on command. As for us, the parents, we don’t always feel like laughing.
Where We Going, Daddy?: Life With Two Sons Unlike Any Other Page 2
