Two Small Footprints in Wet Sand

by Anne-Dauphine Julliand

  “I spoke Marseillais in school today. I called one of the boys in my class copaing,1 and after that he was quite nice to me.”

  Children can be merciless. . . . Despite the teacher’s recommendations, her pupils don’t seem very inclined to let Gaspard fit in. They think this little boy with a funny accent and two sick sisters is weird; some even call him a liar. It has to be said Gaspard set the tone from the start by being disconcertingly up-front.

  As the only new boy in class, on the first day of school he introduced himself to his classmates like this: “My name is Gaspard. I live in Paris, not here. I came here because my sister has metachromatic leukodystrophy and she’s going to die soon. And my other sister, who’s just been born, is sick too. But my parents and the doctors here in Marseille are doing everything they can to make her better. So maybe she’ll live. We don’t know.” The children stared at him, wide-eyed. They’d probably never heard anything like it.

  The first recess revealed the gulf that had opened between him and them. In a matter of minutes, word had gone round the whole school; in a matter of minutes, Gaspard had become a fairground sideshow. Very few pupils dare go near him, many are afraid of being contaminated with this unfamiliar but clearly catastrophic illness. However hard Gaspard reassures them you can’t catch it unless you’re born with it, the kids keep their distance, whispering to each other about the new boy’s bizarre life.

  It’s now nearly a month since Gaspard started school again, and the situation has hardly improved. He’s wilting, surrounded by adults who are often tired and stressed. Thaïs’s homecoming gave him back his smile for a while, but he soon realized he couldn’t play much with his beloved sister anymore. Nowadays, the garden is his savior, his oasis. With his boundless energy, he always felt cramped in our Paris apartment, but here he goes out into the garden every day when he gets home from school. He scatters crumbs from his snack to attract insects, tracks down crickets by following their chirping, or observes in minute detail some new beetle he hasn’t seen before. He dreams up all sorts of adventures for himself, turning a thicket into a whole hostile jungle. But he’s always alone in these imaginary odysseys. And I’m worried by his isolation.

  When I come home from the hospital one evening, Gaspard runs out to meet me, shouting: “Mommy, mommy, I have a friend. A friend just for me.”

  He hardly lets me get out of the car, tugging at my sleeve and dragging me into the garden. There, in the shade of a cypress tree, I see a gleaming new cage. Inside I spy a ball of black, tan, and white fur huddled in a corner. Gaspard reaches his hand through the narrow doorway and gently catches the small animal.

  “Mommy, I’d like you to meet Ticola. He’s a guinea pig. Mamili gave him to me, but I chose him in the shop and gave him his name.” His voice betrays tremendous pride and happiness. But then there’s a note of concern as he adds: “Is it okay with you if we keep him? He’s friendly. He hardly bites at all, and he gives me lots of cuddles. I’ve already told him about our family. Say yes, mommy, please.”

  I look at his sparkling eyes. My heart flips.

  “Of course, Gaspard sweetheart! Do you know, when I was little I had a guinea pig the same color as yours.”

  I pick Ticola up and smile at his tufts of long hair, his small translucent ears and mischievous black eyes.

  “Welcome to the family, Ticola. I’m happy you’re Gaspard’s friend. You take good care of him.”

  What a great idea Loïc’s mother, Raphaëlle, had: giving Gaspard a pet. The two of them form an inseparable team. Gaspard tells Ticola what he’s been doing each day, sharing his joys and confiding his sorrows. As soon as he’s home, he gets Ticola and takes him everywhere with him. Sometimes I even see a little nose peeping out of Gaspard’s pocket at mealtimes. . . .

  Thaïs is also delighted with the newcomer. She likes stroking him and giggles with pleasure when he tickles her hand. She seems happy. As for us, we’re relieved: Ticola makes Gaspard’s life more complete; he’s come and filled a gap that Thaïs was struggling to occupy; he’s taken her place as a playmate. Gaspard doesn’t expect so much from his sister now. He still spends happy times with her, but he no longer complains because they can’t play together properly. As a matter of fact, it’s the other way around—he includes Thaïs as their accomplice. He tells her in detail everything he does with his friend Ticola. He explains to her how he feeds him, looks after him, takes him on walks, and rocks him to sleep. In fact, he watches over that guinea pig the way we watch over Thaïs. One day, he actually looks at me with a worried frown and asks, “Mommy, are you sure Ticola doesn’t have leukodystrophy?”

  1 The French word copain means buddy, and the southern accent typically puts a nasal “aing” sound at the end of words like this.

  18

  WARNING: THE INVADERS ARE BEATING A RETREAT! THE defenses are getting organized in Azylis’s resident army and halting the alien troops’ progress. The chimerism test indicates a worrying inventory of figures: Thirty days after hostilities began, the transplant cells are backing off.

  No one’s waving a white flag, and there are no signs of surrender, but the doctors are concerned by this tendency. The percentage of foreign cells should keep growing. The battle plan needs changing immediately to try to reverse the process. To do this, the doctors have to become skilled strategists. They’re going to induce a programmed and controlled graft versus host (GVH) effect. The technique consists of encouraging Azylis’s cells to attack the transplant in order to stimulate it and elicit a defensive reaction—rather like a mouse provoking an elephant. Then the revitalized transplant cells shouldn’t have any trouble seeing off Azylis’s own cells that have been weakened by chemotherapy. Once the field is clear, the transplant can carry on with its colonization.

  This sort of guerilla warfare requires true mastery; the transplant mustn’t get carried away and bombard our baby’s cells too violently. The attack needs to be proportional to the anticipated result. Described like that, it sounds like some sort of board game. Except there’s nothing playful about this at all.

  The medical team are used to frequent reversals in situations involving transplants. But we’re not. It was all going so well till now. . . . We had everything to hope for. We were wrong to let ourselves be lulled by the good news. We lowered our guard, and now we’re not ready to deal with the hard knocks. Last week, we started hearing talk about Azylis’s leaving the hospital, although we didn’t dare really believe it. Now everything hangs in the balance again. Our hopes have just gone up in smoke.

  Our life is nothing but a succession of waiting games, U-turns, and unpleasant surprises. We spend our time shuttling backward and forward between joy and disappointment. I’m done with finding ways to stay positive, adapt, shelve plans, and start over. I want to go home and get back to our normal life, because back in Paris, although our existence still has exceptional parameters, we have a sense of everyday normality. This place is just a digression.

  “Right, come on,” Loïc says, picking himself up again. “We’re not going to give in. We made a choice when Azylis was born; we committed ourselves to fighting alongside her against this illness. That’s our only goal right now. Of course we want to be home. But that’s incidental. What matters at the moment is that everything goes well for Azylis. And this whole episode becomes just a bad memory. Only then can we start thinking about leaving.”

  I sign the pact once again. Anyway, I don’t have a choice, do I?

  The time has come to do the counts. It’s two weeks now since the GVH was set in motion. From the outside, we haven’t noticed any changes. Azylis is still well; she’s still smiling and babbling. Yet again, there’s nothing to betray the battle being waged on the inside. Appearances certainly are deceptive. . . . We’re waiting impatiently for the results. I’m with Azylis, and Loïc is keeping me company on the other side of the window.

  The doctor arrives with a triumphant expression. The GVH is working as everyone hoped it would. The transplant c
ells are picking themselves up and multiplying at an exponential rate. Azylis isn’t displaying any signs of complications. What a relief.

  Sometimes good news comes in twos. . . . The doctor doesn’t stop there. He tells us that the last set of tests are very encouraging in other ways, and the new bone marrow is doing its work: Azylis is back up to a normal platelet count, so she’s no longer dependent on transfusions. There are also good levels of white corpuscles, which are responsible for immune defense, making her completely autonomous in this area too. She still needs to develop lymphocytes and red corpuscles, but everything seems well underway. So she’s to be transferred without delay to a different hospital department: the “protected area.”

  Can someone pinch me, please! Did I hear that right? Is Azylis really going to leave her sterile room? What, now? Well, almost, as soon as everything’s ready for her. What incredible news! We’re over the moon. The protected area is something of an intermediary between the sterile room and home. The degree of isolation and sterilization isn’t as strict as in UPIX. Of course, we still have to wear masks and keep to our hand-washing routines, but we won’t have to go through that ritual of gowning and degowning.

  I have one burning question: “Will we be able to kiss her?”

  No, not yet, it’s too soon.

  But, deep down, I can tell the time is drawing near. We’re taking a big step toward the doors to the outside world.

  19

  PAUSE. WE’VE PRESSED THE PAUSE BUTTON TODAY, JUST LONG enough to be alone together as a couple. We’ve entrusted Gaspard and Thaïs to their grandparents and left the nurses to mollycoddle Azylis. We’ve put aside our problems and ordeals and exhaustion, and run away from it all for a few hours. Carefree and happy. We followed the dramatic route des crêtes coast road before delighting in a stroll through the tiny streets of Cassis.

  Now the day is coming to an end tucked away in the beautiful Calanque de Sormiou inlet. Protected by the rocky hillsides, it feels like the ends of the earth, with only the vast azure expanse of the Mediterranean as a horizon. What peace! I lean against a warm rock and make the most of the last rays of sunlight, letting the regular sound of the waves lull me. Loïc is half asleep beside me. I close my eyes. Slowly, the events of the last few weeks play out again in my head. And for once I don’t stop the spooling images that are usually so painful. I let a new feeling spread through me: pride.

  The poster for a charity operation called “To each their own Everest” makes its way into my thoughts. It hangs on the wall of the pediatric hematology unit. I walk past it every day. Every time, I sense my heart constricting a little, as if slightly discouraged. Yes, it’s certainly true; we each have our mountain to climb. Only a few months ago, ours looked set to be an accessible, comfortable, privileged ascent—which made the fall all the more brutal. . . . Our path actually went off toward steep ravines, vertiginous cliffs, treacherous hidden dips, and unexpected pitfalls.

  Today, after six months of this really trying climb, we’re allowing ourselves a well-earned break; for a while, this rocky inlet serves as a mountain refuge. And I can finally turn around and look at how far we’ve come. What I see takes my breath away: We’ve covered all that ground already! I look back at it from a safe distance, following every twist and turn. The double blow of the girls’ illness, the unbearable waiting, the sleepless nights and bleak days, Thaïs’s pain, our leaving for Marseille, the girls being hospitalized, Azylis’s transplant, the separations, Gaspard’s tears, the emotional bruises. Our hearts broken so many times . . . and yet we’ve survived. Despite the temptation, we haven’t given up.

  We’ve simply changed our strategy. We’ve stopped trying to make out the summit hidden in the mist; we’ve carried on little by little, cautiously, one foot in front of the other. One day after another. And we’ve come this far, closer together than ever.

  I’m proud! Of us, of him, of our children, our faith and our love. Yes, I’m proud of our life and of all of them—everyone who makes up the long, silent, supportive rope that stays with us on this perilous climb, never wavering or giving up. They support us, some directly and others discreetly, they steady our footsteps and reinforce our achievements.

  Now I know. I know with unshakeable certainty that one day we’ll reach that summit way up there. All of us together. Way beyond the clouds.

  20

  SHE HASN’T LOOKED AT ME. MY HEART LURCHES. THAïS IS lying ON her bed, silent and with eyes wide open. I move a little closer. Her eyes don’t follow me. The evidence hits me like a physical blow: Thaïs can no longer see.

  I’m floored by the violence of this shock. I stumble, try to catch my breath, grab hold of the sheet to stop myself going under. I’m disoriented, lost. Words fail me; not a single sound has the courage to come out of me. Thaïs blind, I can’t believe it. . . . It’s one of the stages I most dreaded. And it’s happened already. I’ll never get used to it. Never.

  I run out of the room, I want to scream through this pain alone, away from her. I don’t want her to see me in this state, even if she can no longer see. I collapse on my bed, inconsolable. I call on Heaven, begging it to give my princess back her sight. “Just her sight, please, just her sight.” I stay there prostrate for a long time until I gather some of my strength. I have to go back and face those eyes that can no longer see.

  I push open the door with the secret hope that I was wrong; perhaps she’ll look at me as usual. If only . . . She turns toward me, but her eyes don’t find me. I hug her to and speak into her ear.

  “I’m here, my darling, it’s mommy. Don’t be frightened.”

  I rock her to calm her fears and ease her pain. But what fears? What pain? She doesn’t look tortured. I now notice how peaceful she seems. It’s my heart that’s going to burst, not hers.

  In my gloomiest nightmares, I imagined how distressed Thaïs would be when she was deprived of light. I pictured her in anguish because she was condemned to darkness. I went to great lengths to console her, but she was still desolate. Reality is taking a completely unexpected turn. Thaïs hasn’t changed. Nothing about her suggests she’s suffering because of this sudden blindness. She’s the same little girl as the one who could see. If I hadn’t tried to catch her eye, I might not have realized she was blind.

  Over the last few months, I’ve read Thaïs’s every emotion in her clear-eyed expression. In it I’ve often read amazement, pain, determination, pleasure, concentration, or happiness; but I’ve never detected an ounce of despair. She’s always had faith and carried on along the path that’s been carved out for her. A mysterious Princess Courage who’ll never stop surprising us . . .

  I need to know, to be sure. When I looked deep into Thaïs’s eyes, I always used to see a spark of life. I bring my face up to hers until I touch it, and slightly anxiously, I delve into her big black eyes. I can see it, the fierce bright little flame. It’s dancing. “I’m here. I can’t see, but I’m still here. Life goes on.” She gives me new hope, filling me with energy and courage. That light is a shard of Thaïs’s soul. A line from The Little Prince nudges into my thoughts, gentle as the wink of an eye: “We can only truly see with the heart. What really matters is invisible to the eye.”

  In a marathon, the last kilometers are said to be the hardest. Here too the last stretch puts us sorely to the test. Our tribulations in Marseille are coming to an end, but we’re struggling to cover the remaining distance. I’m not even sure we’ll all get over the finish line together. . . .

  I had secretly thought of the holidays around Halloween as the deadline for our exodus. I can see them striding toward us, and there’s nothing to imply we’re about to leave, because we have to come to terms with a complication: Azylis still won’t take her bottle. . . . Since she moved to the protected area, we’ve tried progressive steps toward teaching her to suck again. Vain hope; she manages to swallow just a few drops in every meal.

  The doctors have spelled out the problem clearly: So long as Azylis is dependent on a drip a
nd isn’t putting on weight, she can’t leave the hospital. They’re not actually worried, though, and have assured us it’s a matter of weeks, a month at the very most. But we don’t have that sort of time to play with. Not in Marseille, anyway.

  Our plan, which has worked smoothly so far, is wavering and threatening to fall apart. Chantal has come home from her summer trip to the mountains. She’s still just as welcoming and has invited us to stay as long as we need, but we don’t want to inconvenience her in her own home. We’ve abused her generous hospitality long enough.

  Loïc will have to return to work; he’s expected in Paris in the next few days and can’t stay on in Marseille forever. Both our sets of parents soon have to take up other commitments elsewhere. The scaffolding that was maintaining our fragile equilibrium is breaking up.

  I’ve turned the situation over and over inside my head before facing the facts. We don’t have endless different options: We’ll have to be separated. The easiest thing would be for Loïc to go back to Paris with Thérèse, Gaspard, and Thaïs, while I stay in Marseille with Azylis for as long as it takes. I could move into a room in the Parents’ House right next to the hospital. The two of us would join the rest of the family when everything has sorted itself out. This arrangement isn’t very complicated to set in motion logistically, but it’s unimaginable in emotional terms.

  We need to be together to be strong. “One for all and all for one”: We’ve adopted the Musketeers’ motto as our own, even more so in the last few weeks because Thaïs is still going downhill; the regressions are often tiny, almost imperceptible, and sometimes devastating. Not one of us can agree to being parted from her at the moment, even if the separation is temporary. You never know what might happen. . . . One month isn’t much on the scale of a lifetime. But in Thaïs’s case, it might represent an important proportion of her life. Her months are numbered. Time is short.