It’s true, he’s right. I’ve already forgotten the anecdote of the little boy playing with his train set. . . .
“I want to have leukodystrophy too, so that everyone looks after me. But just a little bit of leukodystrophy, not too serious, not so mommy and daddy get worried.” The psychologist listens attentively to Gaspard’s thoughts. My little boy says this quite lightly, unwaveringly. These words, lobbed in halfway through a conversation, are very revealing about what Gaspard has experienced in the last few days. He’s been doing this ever since we told him Thaïs was ill: saying what he’s thinking, very openly. And he’s grown tough on his sister. He puts obstacles in her way when she’s walking; and when she stumbles, he doesn’t help her but fervently encourages her to get over them or go around them, to cope with the situation on her own.
He confides his feelings to us with disconcerting candor. Gaspard is expressing himself, and that’s a good thing. But we feel helpless when it comes to responding to him. We’re finding it difficult enough managing our own pain. We have to reestablish some balance within the family, but right now we’re reaching our limits as parents. Gaspard’s questions are outside our competence. We can’t be sufficiently objective to deal with them lucidly and serenely. So we turn to the informed, professional advice of a psychologist. She holds keys that aren’t available to us.
She sees the three of us together in a comfortable room. Gaspard sits, facing her, with a blank sheet of paper and some felt-tips. At the psychologist’s instructions, we describe the situation while Gaspard draws. Despite his apparent concentration, he doesn’t miss a word of what we’re saying. Our account goes right back to when Thaïs was born. Gaspard colors away more intensely.
“Sometimes,” says the psychologist, intervening for the first time, “when a little sister comes into a family, the big brother isn’t very pleased, because he’s afraid people will lose interest in him. Then he imagines all sorts of terrible things happening to the baby. He might, for example, cast his own sort of magic spell on the baby to make her disappear. And if some time later the family finds out that the little sister isn’t very well, that she’s sick, then the big brother thinks that his bad spell has worked. He feels so sorry. He sees how sad his parents are. He feels guilty that his sister is ill, and responsible for how sad his family is. He’s worried he won’t be loved anymore. But that’s not true, Gaspard, it’s not your fault if Thaïs is sick. It’s not because of anything you did. Look at me, Gaspard. It’s not your fault; it’s not because of anything you did.”
Gaspard keeps his eyes lowered. He doesn’t say a word. But every inch of that sheet of paper is colored. In places the paper is almost torn.
“And it’s not your fault if you’re not ill,” the psychologist carries on, handing him a fresh sheet. “You’re lucky to be well, you know. You have so many things to do in life—things that will make your parents proud and happy. And you don’t need to have leukodystrophy for people to take care of you. But you have every right to say you want your own place in your family.”
Gaspard stands up and comes to huddle between the two of us. Tears are streaming down my face like commuters familiar with the route. He’s not yet four. His life is being built on these events. How can he stay balanced? Or believe in the future? How many boys his age know the world “leukodystrophy”? Childhood is all innocence and carefree fun. But, at such a young age, he is being confronted with adult concerns: sickness, suffering, and soon death. I want to spare him and protect him from all this. I want to reassure him once and for all of our absolute love. And yet again, in the eyes of my little treasure pressed close to me, I see a child’s incredible strength. Gaspard is no longer afraid. He trusts us completely. He’s been told, it’s been explained to him, and he understands. He’s accepted. We may have to repeat these things ten times, a hundred times. But each time, he will move forward slightly.
On the way out Gaspard seems happy.
“I like what the lady was talking about,” he says with a smile. “She’s interesting and kind. I’d like to talk to her again.” And clutching his art in his hand, he adds: “I took the picture. I won’t give this one to anyone. It’s mine!”
Yes, my darling, it’s yours. In that picture you expressed a part of yourself.
4
IT’S A REVELATION. SO OBVIOUS. WE PASS A DEFINITIVE milestone that day, almost without realizing it. We have an appointment in a different Paris hospital, with a professor who specializes in leukodystrophies. This meeting is important because, so far, our knowledge of the illness has been restricted to the snatches we remember from that first meeting and from information harvested on the internet. We have built up our strength a bit now, and we want to know more. We want to be prepared, to do battle as best we can.
Thaïs comes with us. The professor sees us with his collaborator and with the duty psychologist. We immediately feel we can trust them, even though we’re both now so wary of men in white coats. Thaïs is relaxed too; she keeps smiling and joins the conversation in her own way.
The professor takes more than an hour telling us what he knows about this orphan disease. He answers our often blunt questions: We want to know when the various stages of degeneration will come, how and in what order, and when and how this leads to death. We want to know everything. Because when you know, you’re not so frightened. But it’s impossible to answer all our questions as precisely as we hoped. There are still a great many unknowns in the field—the illness is too rare. It affects just one child in several tens of thousands. That’s very few. And too many at the same time. In the end, what the professor tells us backs up what we already know: Thaïs will lose her faculties in a fairly short timescale. And science can currently offer her no hope of a cure.
At the end of the visit, I get my princess dressed again on the examination bed, with my back to everyone else: the doctors, Loïc, and the psychologist. I am completely focused on her, her alone, and I speak to her with all the spontaneity of a mother, a mother in pain: “You heard everything the doctor said, my Thaïs. He’s explained that you won’t be able to walk, talk, see, or move. It’s very sad, it’s true. And we’re very unhappy. But it will never get in the way of us loving you, my darling, and doing everything to make your life happy. I promise you that, my baby: You’re going to have a lovely life. Not a life like other little girls or like Gaspard, but a life you can be proud of. And you’ll never be short of love.” Ours and the love of so many other people. . . .
From then on, everything is clear. So clear! We are going to move the cursor that marks a life’s timescale. Before we were told about the illness, we had thousands of plans for Thaïs, thousands of hopes. Enough for a whole lifetime. For a life that would end without us, most likely at a respectable age. Now we have to move the cursor forward, bring the finish line closer, shorten the timescale. And that won’t alter the most essential element in any existence: growing in an atmosphere of love. Yes, Thaïs will learn love. Like Gaspard, like other children, but in a shorter space of time. Thaïs’s lifetime will be more limited, yes, but it will be more dense. More intense.
The black and white world in our hearts is gradually taking on some color again.
Amazing though it may seem, life carries on almost normally, and we move house at the end of March. Everything carries on as planned. We’re happy in the new apartment, we now have more room, and we appreciate the extra space. Gaspard and Thaïs could have a bedroom each, but they would rather stay together. It’s touching to see how well they get on together, accomplices supporting each other. It’s touching and heartrending. . . . Shush! The present, nothing but the present . . .
We haven’t moved far, only five Métro stations away. When we chose our new apartment, we didn’t yet know that Thaïs was ill. We decided to keep Gaspard in the same school and Thaïs with her caregiver rather than finding arrangements for them near the new home. We were worried it would be disruptive for them. Changing halfway through the school year isn’t easy. And, any
way, the school and the caregiver were near my office. It shouldn’t be too difficult to organize.
What a mistake! The situation quickly proves impossible. All four of us catch the Métro together every morning. I get off with Thaïs before Loïc and Gaspard, who carry on another two stops. I climb the stairs to the surface carrying her in her stroller. Then I have a brisk fifteen-minute walk to the nanny’s house. And another ten minutes back the other way to get to my office. Then the day’s work begins. In the evening, I rush to pick up Thaïs, then, still rushing, we go to Gaspard’s school, hoping we won’t be late. Next, we hurry to the physiotherapist for Thaïs’s motor skills treatment. After that the three of us head home in the Métro . . . or rather the four of us, because it’s at this time of day that I’m particularly aware of my growing baby.
When I get home after more than an hour of this frantic pace, I’m just a shadow of myself, quite incapable of coping with the children who want a snack, a story, a game, a bath, a meal, a cuddle. All I want is to sink into the sofa and stay there. Loïc does everything he can to get home early, look after the children, make an effective contribution to this assault course, and offer me some relief. But he doesn’t have enough time or energy. Our stamina takes quite a knocking.
One day I’m sitting flushed, breathless, and exhausted in the Métro, asking Gaspard to stop playing with the flip-down seats, and anxiously counting my contractions while Thaïs wails, when a man snaps at me, “There’s no point having so many children if you can’t cope with them.” Absolutely zero compassion from this man who’s clearly had his heart amputated! I’d like to hit him over the head, but I don’t even have the strength to reply. I only manage not to break down. If he knew . . .
So when I get home, I pick up the phone to call mom, crying my heart out as I say, “I need help.” I’m not asking for a single favor, I’m sending out an SOS. Help! I can’t go on. Exhaustion is the ordeal within the ordeal. When you’re overtired, you can’t do anything constructive or see anything positive on the horizon. We don’t need that. But it’s still difficult to acknowledge that you’re dependent on others, it takes a degree of humility to admit you’ve reached your limits. In this instance, though, I swallow my pride because doing so is vital. We’ll never get anywhere if we carry on in isolation. It’s the first time I ask for help. Not the last, oh no.
We soon realize we’re not alone, far from it, and everything is sorted out quickly: A network of goodwill, from friends and family, is woven around us, like a parachute. It will never fail us, not in times of difficulty, nor in our everyday routine. I can’t talk about it without a surge of emotion and gratitude for everyone, from near and far, who agreed to set sail into the storm with us and helped us stick to our course—and avoid capsizing.
From that day onwards, I never have to cope with Gaspard and Thaïs alone in the evening. There are lots of them—cousins, aunts, uncles, parents, friends—who answer the roll-call and take up their watch beside us. The days are less of a burden. I can catch my breath at last. Loïc too is less stressed.
Despite the comfort it affords us, it’s still not always easy accepting help from other people. I learn not to say “thank you” every two minutes, to receive the kindness offered with total simplicity. I open the doors of our home, our daily lives, our intimacy as a family to other people. And I’m touched when I see the tact, respect, and efficiency in what they do. These are all forms of support, and they just keep coming. And still do.
Life becomes more organized. We have a taste of calm once more, a luxury we had forgotten. We start relaxing, managing to sleep again. Things aren’t going too badly. . . . But the period of respite is brief because Thaïs’s condition takes a sudden downturn: By early April she can no longer walk unaided and all her limbs shake. We find it very trying, but sadly, this is only the tip of the iceberg. The worst of it isn’t something you can see, it’s something we experience, painfully: Thaïs has frequent explosive screaming fits, particularly in the car. It’s unbearable.
At first we put these scenes down to her feistiness: She must be rebelling against staying in her car seat. We try endless different tactics to stop these appalling tantrums: We get angry, pretend not to notice, console her, sing for her, laugh, cry. We change car seats four times. Nothing makes any difference; even the shortest trip turns into a nightmare. All of us, including Gaspard, dread going anywhere by car. And we eventually realize that something’s not right. These outbursts are too violent, too frequent, too long, and too traumatic to be just tantrums. There’s something inhuman about them.
We go back to the hospital that specializes in leukodystrophies for advice. There we discover an aspect of the illness that hasn’t shown until now: pain. No, of course Thaïs isn’t just making a scene. She’s in agony, absolute agony. We learn a horrible new expression: neuropathic pain. This pain is associated with lesions on the nervous system; it can be searing and is resistant to classic forms of pain relief. It is often compared to a burning or stabbing sensation or to electric shocks. It’s excruciating for parents to be told this. We have only one response: “Do something to make it stop!” The doctor prescribes a number of drugs to ease the suffering. Not the sort you would usually find in a household medicine cabinet. These are the first of a very, very long succession of tablets, syrups, pills, capsules, drops, etc., aimed at relieving our daughter’s pain.
This impressive medication brings its own disappointments. We often need repeat prescriptions because we keep having to increase the dose as the screaming fits become more frequent. The pharmacists are getting to know us. But one day, I unexpectedly have to go to a different pharmacy. I hand over Thaïs’s prescription as I glance at the beauty product displayed on the counter. The pharmacist reads it, looks up at me in astonishment and looks back at the prescription.
“Excuse me,” she says eventually, “but who is this medication for?”
“My daughter.”
“Your daughter? How old is she?”
“Two.”
“Two? I’m afraid there’s a problem here. They don’t give this sort of medication to such a young child.”
I wasn’t expecting to be refused like this.
“I know it seems unusual,” I try to explain, “but my daughter has a very serious illness. She has . . .” and that’s when I go blank! I just can’t remember the name of this godforsaken condition. I concentrate, struggle to remember, try to describe it. Without success. The pharmacist is looking more and more skeptical. She turns to one of her coworkers who peers at me with the same suspicious look in her eye. I’m still desperately trying to remember the name, furious that my memory’s letting me down in these particular circumstances. Still staring at me, they go to consult the pharmacy manager. As his eyes alight on the prescription, the words blurt out of my mouth: “metachromatic leukodystrophy.” I’ve shouted it across the whole store.
“My daughter has metachromatic leukodystrophy,” I carry on a little more quietly. “It’s a degenerative genetic disorder . . .”
The pharmacist looks at me compassionately, nodding his head. He knows.
“It’s okay, you can give the medication to this lady, no problem.”
The woman who first served me comes back over.
“We’re really very sorry,” she says, handing the boxes over to me. “We never see prescriptions like that for such a young child. Next time we won’t ask any questions.”
As I head toward the door, clasping the bag to me like precious booty, she adds: “You hang in there, you and your little girl.”
5
I SO MISS THAT LITTLE OUT-TURNED FOOT. IT WAS THAïS’S distinguishing feature. I grew fond of it. It doesn’t turn outwards anymore, because she can’t walk now. Not at all. Not holding someone’s hand, or leaning against the wall, or using a walker. Her legs have given up; it’s too difficult. The brain had stopped sending them the right information. They fought valiantly, but eventually they let go. Thaïs will never leave her little footprints in
wet sand again.
Even with the best will in the world, there’s no fighting an enemy as stealthy as this illness. Thaïs has given in. Sometimes people talk about losing a battle but not the war. Sadly, I’m afraid we won’t be winning any battles—or the war—against metachromatic leukodystrophy. It will have the last word.
Unless the battle isn’t the one we think it is. What if the fight were actually going on in a different arena? True, Thaïs can’t walk anymore, but has she actually lost anything because of that? She certainly doesn’t look defeated. Quite the opposite. She’s gathering her strength to concentrate on other fronts and gaining in strong will, patience, and lucidity. She uses our legs to get about, guiding us by pointing at where she wants to go and saying, “There, over there,” in case we don’t get it. Thaïs knows what she wants more than ever. And what she wants isn’t necessarily what we want.
We want her to grow up like other children, develop like other children, live like other children. We want her to be like other children because we’re afraid. Afraid of the unknown, of her differences, of the future. But she isn’t afraid. That’s the way most really young children are. It’s why they can jump fearlessly from a table into their fathers’ outstretched arms. They’re not afraid, and they trust us. That’s where Thaïs gets her strength—and her serenity. She’s not worried about tomorrow, because she’s not thinking about it. And because she trusts us: She knows we’ll be here, whatever happens. She wants to carry on in her own sweet way . . . even if that way is steep and she can no longer walk. That way is her whole life. She tackles it as it comes along, not comparing it to anyone else’s. She feels its difficulties but also appreciates its good times—all the ordinary little things that we don’t see because we’re blinded by sorrow and fear.
Two Small Footprints in Wet Sand Page 2