Two Small Footprints in Wet Sand

by Anne-Dauphine Julliand

  It’s a universal fact: All children play, whatever their circumstances. It’s a drive that goes beyond difficulties, ignores conflicts, and erases differences. Thaïs’s many cousins make no departure from the rule. And they’re careful to include Thaïs in their games because they’re well aware that she wants to play just like them. Her illness doesn’t change that. One day the gang of cousins arrange a party in Thaïs’s room, with music, but not too loud, savory snacks, sodas, and great choreography. Even we, the parents, get up and dance, infected by their joy and enthusiasm.

  The children don’t just play with Thaïs, they’re conscious of her delicate state of health and what’s going to happen to her soon, and they watch out for her. They constantly come and check if she’s okay and has everything she needs. Over the month of August, two lovely illustrations of this attentiveness stick in my mind and fill me with emotion.

  “What are you doing here? It’s very late; you should be in bed.”

  “I’m reading Thaïs a story so she goes to sleep and has nice dreams. It’s a story about a princess.”

  I smile, amused and touched. With the full weight of his recently celebrated status as a four-year-old, Alex can’t actually read. And he loathes tales full of princesses. And to top it all, Thaïs has already been asleep for hours. But I don’t say any of that. Of course not. I reply as seriously as I can: “That’s very kind of you. It’s a good idea. Go on, finish the book and then get to bed quickly.”

  Alex carries on with his “reading,” out loud and very intelligibly, concentrating hard on the thread of the story.

  Jean is standing by the bed, motionless as a guardsman at Buckingham Palace; he’s armed with a yellow plastic flyswatter. Before I ask any sort of question, he justifies being there: “Thaïs can’t defend herself against insects that attack her, so I’m mounting the guard. As soon as I see one coming over, bang!” he explains earnestly, giving a determined whack of the flyswatter. “If the fly settles on Thaïs, I don’t swat it obviously. I shoo it away with my hand, and once it’s flown away, I track it down.”

  Jean describes his strategies without taking his eyes off a small mosquito buzzing over the bed unaware of the risk it’s taking.

  Thank you, children.

  37

  “When did he leave you?”

  “Just over two months ago.”

  “Two months? Why did he go?”

  “Another woman.”

  I HANG UP, SHAKEN BY WHAT I’VE JUST HEARD. DOUBLY SHAKEN: sad for this very dear friend who’s been abandoned by the love of her life, and sad because she waited two long months before telling me. We used to tell each other everything, straightaway. Now, it’s all different. . . .

  I’ve spoken to her on the phone over the last couple of months, and she never said anything. Not a word, not even a hint. That silence must have taken a great deal of self-control. I can picture her holding back her tears, disguising the dull tone of her voice, clinging to pointless details to keep what mattered quiet. So much effort . . .

  I know what motivated her silence. A sort of embarrassment, it’s the same for everyone. “I didn’t feel I could talk to you about it. It’s nothing compared to what you’re going through.” I close my ears and my mind to it every time. Do we always have to compare our misfortunes? View them according to a hierarchy, a classification system? It’s terrible to have a feeling of inferiority in your distress. If people use that line of reasoning, we’ll soon be relegated to the realms of Untouchables, among those whose pain is pretty close to the top of the pyramid. Unreachable. Isolated. Despairing.

  Compassion opens hearts. Mine would end up shrunken and gnarled if it didn’t share the sorrows of those I love. And their joys too, of course. My, it’s tough handling the guilt that happy people feel! Why does laughter die down when we come near? Why do smiles fade, faces drain of color, and fingers fidget? It’s not as if I wear my distress for all to see, pinned to my chest and visible at twenty paces like a cheerleader’s rosette on election night. I don’t exhibit it or thrust it on people.

  I want to take pleasure in good news, even the most trifling. I’d so love it if my friends carried on giving me details of their love lives, their career choices, the latest clothes they bought. I’m still interested in all that. It’s not such a big part of my daily life, true, but it is of theirs, so I’m interested in it. I’m convinced that if you keep these conversations going, if you talk about everything and anything, then you find it easier to tackle thorny subjects. If I can laugh with them, they’ll be able to cry with me because we’ll still have the connection. If not, we’ll grow apart until we no longer know each other.

  If ever someone close to us asks me how he should behave toward us, reaching out his empty hands, palms uppermost in a gesture of impotence, I won’t hesitate for a moment: “Just like before. Like everyone else. Normally.”

  This August evening is the night for shooting stars. The sky is the stage for a fairytale ballet. I scan the heavens, prepared to spend all evening lying unblinking on the dry grass, in the hopes of seeing a shooting star flit by, because I have something to say to it. I’ve only just got comfortable when I catch one; I hang on to the very end of its golden trail for a fraction of a second, just long enough to whisper my wish, “I want to carry on being Mrs. Anybody.”

  38

  ONE FOOT IN FRONT OF THE OTHER. SLIGHTLY TENTATIVE. One step, then two. Rather wobbly ones. Azylis is walking! Not altogether on her own, she’s holding onto Loïc’s finger, but that bit of help doesn’t really count, it’s just to give her confidence. The main thing is she’s moving forward upright on her legs, even though a bit shakily. Yes, she’s walking. She’s looked ready to launch herself for a few days now, but she still wasn’t sure. Today she’s taken the leap. She’s keeping her eyes on the nearby sofa, the final destination for this adventurous epic. She takes one step after another, still holding her daddy’s hand. I’m there watching, my eyes pinned on the tips of her shoes, my heart pounding.

  Does her foot turn outwards? I can’t help thinking about it and being afraid. I so dread suddenly spotting the imprint of the illness on Azylis in some perfectly ordinary gesture. What I fear most in the world is shakiness in her hands or a slight twist of her heel—indisputable signs of the problem afflicting her. Despite my determination to have faith, my anxiety is growing with the passing months because every day brings us closer to the critical period when visible symptoms of leukodystrophy could appear.

  So, almost unconsciously, I spend my time dissecting Azylis’s every move: I watch her when she drinks, when she eats, when she sits down, when she goes to bed, when she walks, when she cries. I compulsively analyze how she tackles each milestone in life, trying to remember how Gaspard did it. And particularly how Thaïs did . . .

  Does her foot turn outwards, then? It doesn’t seem to, not at first sight. No, I don’t think it does. Unless I’m not looking closely enough. But my eyes are stinging—I’m staring so hard at the ends of her shoes. I can’t work out what I’m seeing anymore. I haven’t even enjoyed my baby daughter’s first steps; I haven’t even acknowledged her achievement. I’ve let this uncontrollable terror overrun me. I sit on the sofa she’s just reached with such glory, as others might reach the summit of Mont Blanc, and I cry. Tears of fear mingled with tears of pride. I congratulate Azylis by hugging her to me, a little too hard.

  “Well done, my darling, you’re walking!”

  Yes, she’s walking. But Thaïs used to walk too. And yet . . .

  We haven’t noticed the time passing. That’s how you know you’re enjoying yourself. The month of August has sped by: I feel as if we arrived yesterday and we already need to pack up our bags, tidy the house, and head back the way we came. The cousins part with promises to meet up again soon. The goodbyes are tearful; no one likes vacations coming to an end.

  The ambulance men, the same ones, are punctual, and the return journey isn’t as stressful as the outbound one: A few hours later, the ambulan
ce arrives at our destination without incident. We’re back home once more, and we quickly get back into our routine.

  Thaïs is happy to be with her beloved nurses and physical therapist again. They’re happy to see her too after this month-long separation. Despite their joy, I can tell they’ve noticed changes in their patient. We ourselves are aware her condition has altered.

  All through August we had no major fears, like the one in the spring or last Christmas, but a host of little anxieties: With no obvious reason why, her heart-rate would speed up or slow down, her breathing would stop for a while or her temperature take off. Every incident is dangerous, and Thaïs never comes out of them completely unharmed. She spends most of her time dozing, and sadly not only because of the morphine. This lethargy is becoming more and more like a loss of consciousness. Leukodystrophy is making its mark deep down now, right into the connections in Thaïs’s brain.

  These periods of light coma give me a peculiar feeling. Thaïs may well look as if she’s sleeping serenely, but you can tell this is no ordinary sleep. At times like this, she emanates a particular sort of density. The intensity of her unconscious presence is so powerful that it makes us talk to her and treat her as if she were awake.

  I always feel incredibly relieved when Thaïs emerges from these sluggish periods, because I’m always afraid she won’t come back. The doctors predicted that her death was imminent in December, but despite expectations, Thaïs is still here nine months later. Gaspard is actually convinced his sister’s immortal.

  Children with leukodystrophy often die of the effects of a respiratory problem or of a chronic infection. Thaïs hasn’t had this sort of complication since Christmas; she hasn’t caught the slightest virus or the tiniest bug. I’m utterly convinced that Thaïs is going to go all the way with this illness. And I feel that the end is striding ever closer.

  Tomorrow is back-to-school day. Gaspard has everything ready; he’s sharpened his pencils, sorted out his books, folded his overall. A buckled satchel is sitting in pride of place in the hallway, ready for the big day. Just one satchel. Thaïs won’t be going to school tomorrow. Not tomorrow, not ever.

  Tomorrow, every child her age will head off to nursery school, walking bravely, accompanied by proud, emotional, stressed-out parents. Tomorrow, Thaïs’s day will be like today, and the day before, and the day before that. She won’t get up, won’t get dressed, won’t put her satchel on her back, won’t squeeze my hand when she steps into a classroom for the first time. Tomorrow nothing special will happen for her; she’ll follow the usual succession of nurses, physical therapist, and the man delivering gas bottles and food pouches. Her own routine.

  Tomorrow, on his way to school, Gaspard will keep his head lowered, sad that Thaïs isn’t going to school like him. I’ll hear him mumbling under his breath, working out which grade he will be in when Azylis comes to school; crossing his fingers in the hope he’ll still be in elementary school with her. I won’t dare tell him that she may never be up to going to school. I’ll say nothing because I have no idea about Azylis’s future. I’ll leave his hopes intact.

  Tomorrow, Gaspard will cry in my arms, for a long time, outside the door to his new school—like lots of other kids perhaps, but not for the same reasons. He’ll cry, devastated that he’s the only child in his family to go to school. As I console him, I’ll gauge what a heavy burden normality can be to bear when it becomes the exception.

  Tomorrow, before going into school, Gaspard will formulate one last request through clenched jaws: “Mommy, could you explain to my class about Thaïs? And about Azylis too? Please. I’d prefer it if you did it. It’ll be better. The kids’ll believe you.”

  Tomorrow, our mountain will feel like the Himalayas. Only bigger.

  39

  WE’RE TURNING A NEW PAGE. AND NOT JUST ANY PAGE. A great big one, written with a tremulous hand: the transplant page. A year after the operation, it’s all over. Azylis has an ordinary immune system and plenty of blood cells. Everything’s back to normal, and Azylis no longer needs to go to the hospital for transplant follow-up tests. She’ll just have a blood test from time to time and an annual checkup. Not much more than that, at least as far as the transplant is concerned. As for monitoring the illness, things haven’t changed: Azylis will continue to have tests every three months to check how the situation is evolving, and we don’t know when those appointments will stop. If they ever do.

  Right now, we’ve turned the transplant page once and for all. It’s crazy, but as the months passed by, I eventually forgot this stage would come to an end. Something transitory had taken root in our lives. I grew accustomed to the regular trips to and from the hospital; they’d become a routine part of our lives. As I turn the page, I realize I have absolutely no regrets or remorse about this period; I don’t even have bad memories of it. Perhaps memory is selective and retains only the best moments so we can tolerate the past. I’ll just remember a general feeling of tiredness at various points, a few unpleasant impressions, such as my terror on the day of the transplant itself or how frightened we were when the doctors deliberately provoked a graft versus host response. But nothing serious. No wound. No scar.

  This page takes another one in its wake, one that follows the trend and turns over too. This is a page I’ve hated: Azylis’s medication. For months we had a daily struggle to get her to swallow wretched tablets and horrible syrups. Every day, we battled against her retching and ignored her tears, telling ourselves over and over that it was for her good. Every time I cursed as I wondered, Why? Why don’t the pharmaceuticals labs make drugs that are practical for children?

  As soon as you venture away from the classic strawberry-flavored syrups for fevers and mild pain relief, children’s medication becomes a real headache. Drugs aren’t of suitable form or taste for the very young. They’re acrid, bitter, rasping, cloying, grainy, disgusting. They come in the form of capsules or tablets, which are impossible for children to swallow. We always had to open the capsules or crush the tablets, dissolve them in water, and then get our recalcitrant daughter to drink them, praying she wouldn’t spit it all out. More than once I thought longingly of Thaïs’s gastrostomy, which facilitated the administration of all her medication.

  These constraining rituals are behind us now, and that makes me happy—for our sakes, but more importantly for Azylis’s. Her life is more and more like the one other little girls her age lead.

  It always amazes me: Every time someone goes into Thaïs’s room and she’s not asleep, she turns her head toward the visitor. And when someone comes over to the bed, she very obviously turns to face the person, whichever side of the bed he or she stands on. How does Thaïs know so accurately whereabouts in the room we are? It’s a real mystery.

  Today, still, she welcomes me by stretching her neck toward me. I go right over to her and start talking to her gently as I lean over her. Just then she turns her head away from me, where there’s no one. I walk around the bed to get back into her “line of sight.” She turns the other way again. What’s going on? Is she angry? She doesn’t look upset. I move again; her head swivels in the opposite direction.

  After several fruitless attempts, I start worrying. Has Thaïs lost the instinctive compass that makes her always turns toward us? Has she now been deprived of this sixth sense which means she can sense us without seeing or hearing us? It’s only then that I hear a little purring sound that we all recognize: Thaïs is laughing!

  Everything becomes clear. Thanks to her laughter, I realize she’s actually playing a trick on me. She’s playing hide-and-seek, that’s all. It’s always been her favorite game, so she’s found a way to carry on playing it. A child’s imagination has no limits. Like babies who think they disappear when they hide behind their hands, Thaïs thinks she’s invisible just by turning her head the other way.

  I’m eternally grateful for this magic moment when a little girl imperiously thumbed her nose at her illness. Nothing can stop her playing. Like the boy with his electric t
rain.

  Won over by her irresistible ingenuousness, I throw myself into her game, pretending I can’t find her. Relying heavily on gestures and sounds, I search frantically for her as if I can’t see her, even though she’s right in the middle of the room—and the very heart of my life.

  40

  THE EASEL IS SET UP, THE BRUSHES READY, THE PALETTE prepared. The talented Bertrand sets to work. Painting Thaïs is his idea, immortalizing her as she is today: beautiful, so beautiful.

  Our friend Bertrand has enough talent, experience, and ability to save him from the terrors of a blank canvas, but it’s a long time before he applies the first touch with his brush. He knows everything this portrait will mean to us later, when Thaïs is gone. Photos are sometimes crude because they can’t disguise any of the reality. Painting is more tactful. It can smudge out unsightly tubes and erase imposing machines, keeping only what really matters: a pretty little girl asleep on her bed.

  Alone with her, he absorbs the feel of the room, of Thaïs’s favorite treasures, her world, everything that describes her and so aptly represents who she is. Then, driven by a creative urge, he applies himself to the job. Thaïs isn’t a difficult subject to paint, she’s not impatient, doesn’t throw tantrums or suffer from cramps. She holds her pose effortlessly, in fact she doesn’t move a muscle because she’s sound asleep. In the sort of sleep that is now so common, hovering on the edge of unconsciousness.

  A few hours later the artist is putting the finishing touches to his painting. And then, as if aware her visitor’s about to leave, Thaïs wakes up. She barely opens one eye, but it’s enough to reveal a little glow of life. With his eyes pinned on his model, Bertrand takes up his brushes again, and in two or three expert flourishes he transforms his work. In the gap between her eyelids he puts a shining pinpoint of black. He draws out the corners of her lips and tints them a stronger red. These small details reveal Thaïs’s smile and light up the picture.