Two Small Footprints in Wet Sand

by Anne-Dauphine Julliand

  Solidarity . . . is that really what’s driving these friends, relations, cousins, some young, some not so young, to spend an hour, a day, a night in a confined hospital room with a two-year-old girl who can no longer see, no longer talk, and no longer move? I don’t think this is just a rush of solidarity, no. I can tell there’s more to it. I can tell from how motivated they are that it’s stronger than sympathy, more intense than compassion, deeper than affection.

  Through anecdotes, personal stories, and confidences, each of them explains in veiled terms what it is that brings them to be with Thaïs. And we accept all their reasons—which boil down to just one—as gifts . . . straight to the heart.

  “Is anyone there?” The nurse comes into Thaïs’s room and is amazed to find her alone on her bed, eyes wide open, laughing softly and turning her head from side to side. The cupboard door suddenly opens, and Caroline peeps her head out.

  “Shh, I’m playing hide and seek with Thaïs. Don’t say you’ve seen me; it’s not easy finding a good hiding place in this hospital room. She finds me straightaway under the bed.”

  Touched, the nurse puts a finger to her lips as a sign of consent and goes over to Thaïs to administer her treatment as if there was nothing unusual. Thaïs is thrilled.

  That day, despite being thirty, Caroline managed to find a childish spirit that had been buried deep inside her for too long. She found it for Thaïs . . . and thanks to her.

  Louis-Étienne is sitting on the edge of Thaïs’s bed, his eyes red and his nose swollen. He’s crying because his heart’s been broken for the first time. At twenty, we’re convinced the wounds inflicted by love will last forever and could even prove fatal. He’s inconsolable. He confides in Thaïs, describing the torments of his heart and the vicissitudes of his love life.

  Thaïs turns toward him, catches his attention, and starts to laugh. She laughs more and more exuberantly, without stopping—so loudly that Louis-Étienne can’t resist the onslaught and lets himself be swept up in it. He starts laughing too. The two of them laugh a great throaty laugh. All of a sudden, he can look on the bright side again.

  He kisses Thaïs’s hand tenderly and, as if making a confession, admits, “You’re right, little Thaïs, it’s not as serious as all that.”

  Perhaps this is the magic that brings these cohorts of goodwill to Thaïs’s side. The magic called love.

  Happiness is sometimes based on such little things, tiny, minute. Ours takes shape this morning in a microscopic molecule: arylsulfatase A, the enzyme Azylis was missing . . . and which is now present in her organism. It’s invisible to the naked eye, but the tests are incontrovertible: It’s definitely there! It’s a beam of sunshine in the middle of December.

  When Azylis was born, her level of arylsulfatase A was close to zero. She now has a normal level . . . like someone who doesn’t have metachromatic leukodystrophy. That was the whole point of the bone marrow transplant. We’re there.

  Having this enzyme is an essential prerequisite to halting the progress of the illness. Without it, nothing can stop the myelin being destroyed. We’ve taken a big step forward and suddenly embarked on a new course, one where we’re allowed to hope. What if all this soon seemed like a bad dream? What if she starts walking when she’s older? What if she can live like everyone else? What if, what if, what if . . . I have a myriad of promising “if”s inside my head.

  It’s too soon to give a cry of victory. Far too soon. Nothing has actually been won, because although production of this substance is vital to curing Azylis, it doesn’t necessarily guarantee that the illness will be curbed. Medical science can’t explain the unfathomable mysteries of the human body. Not yet.

  There’s only one thing we can be sure of today: The enzyme is there. But there are still countless unknowns to confront. Will the enzyme be effective? And if so, will it be effective before the illness causes irreparable damage? Will it be sufficiently effective to stop the destructive process once and for all? Only time will tell. Every three months, Azylis will be subjected to a battery of tests to monitor developments as closely as possible. These tests will indicate whether her neurological and motor faculties are stabilizing or unfortunately . . .

  Fine, but that’s not what’s happening today. I’m leaving those worries for later. For now, I’m fully savoring the good news. As far as the future is concerned, I have to try to hope for the best by focusing on the positives. Things are making encouraging progress: The transplant seems to be taking very well, and the enzyme is there. That’s enough to give us plenty of hope. And it’s a recognized fact: Hope is life-giving.

  25

  “PUT YOUR WORK BACK ON THE LOOM TWENTY TIMES,” THE poet Nicolas Boileau said, meaning things can always be fine-tuned and improved. Right now we’re going under, overwhelmed by the terrifying increases in Thaïs’s pain. It’s ever more violent, forcing the doctors to keep reviewing their ideas and altering the pain relief treatment every day.

  Thaïs has now been in hospital two weeks. She was meant to stay only long enough to establish appropriate medication, but her time here is dragging on and on. The picture is getting grimmer by the minute. Pain is no longer our only cause for concern, nor the worst; far from it. The illness is attacking the last ramparts. It’s making inroads into her central nervous system and threatening vital functions.

  This morning the doctor asked both Loïc and me to come to see him, a request which can’t mean good news. When we’re summoned together, it’s usually a bad sign. This is no exception: In a colorless voice, he tells us that Thaïs’s life is drawing to an end.

  Already.

  Winter permeates the room. Our tears freeze, our blood turns to ice, our hearts frost over. How can this be possible? I can picture my pretty Thaïs back in February, serenely getting on with life with her unusual little walk. That was yesterday! Since then the illness has gathered speed, galloping even faster than we’d feared. And there was nothing anyone could do to slow it down. Three brief seasons later, this runaway horse has unseated us, leaving us reeling.

  In the summer, we already started worrying about how long she had, but not in the same way. Thaïs was very unwell at the time, yes, but she wasn’t lost. Medical science could help her get out of that tricky phase. Today, now that we’ve reached this stage of the illness, we no longer have control of anything. Her vital functions could fail at any moment. Thaïs is at the mercy of fatal cardiac or respiratory failure. We’re overwhelmed by a horrible feeling of impotence. What can we do? If we knew . . .

  Thank you, Don Quixote. His dogged battle against harmless windmills is an incalculable help to me. In these dark hours, it sheds light on one distinct point: You have to be sure you never identify the wrong enemy. Now there’s one thing, sadly, that’s absolutely certain: Even with the best will in the world, we can’t save Thaïs. This assertion isn’t an admission of defeat, it’s just that I’m coming to terms yet again with the fact that, deep down, for months now, it’s not leukodystrophy that we’ve been fighting.

  This illness is a windmill which could make us flail the air pointlessly. We don’t have the energy to waste; we surrendered our weapons long ago. But that doesn’t mean we’re standing by redundantly. We’re trying to tackle another challenge. “Adding life to the days when you can’t add days to the life.” That’s our fight. Not any other.

  Back in the spring, I made a commitment to Thaïs in both our names, Loïc’s and mine, to do everything I could to make her happy. That promise has more meaning now than ever. We’ll carry on serving it. To the very last. And we won’t shy away from anything.

  It’s now mid-December; Christmas is on the way. If there’s one family celebration that Loïc and I particularly like, then it’s that silent night. Ours looks set to be somber this year. It’s entirely up to us to make it better. . . . Even without any discussion, we know what we want. We tell the doctor together: Thaïs is going to come home, for good.

  It’s madness! Yes, it’s madness. Well, good! We’re p
repared to go completely mad for Thaïs’s sake. We don’t have the heart to entrust her final days to other people, in an impersonal hospital setting. She belongs at home, surrounded by her family. We feel we have the strength and courage to keep her with us. Nothing can stop us. The urgency of the situation gives us the impetus we need to take the step.

  This leap into the unknown goes hand in hand with a giddying feeling that’s both comforting and disturbing. Comforting because we’re sure we’re doing the right thing. Disturbing because we have no idea what’s in store. Thank goodness.

  The doctor accepts our decision and supports us by making arrangements for Thaïs to be cared for at home. In a few quick phone calls, everything’s ready. We can go. When we leave the hospital with Thaïs, the nurses struggle to conceal their emotion. They know they’ll never see their Princess Courage again.

  In-home care. What a revolutionary idea. It can be summarized like this: If you don’t come to the hospital, the hospital will come to you. Without wasting any time or leaving anything behind. The very day Thaïs comes home, a nurse rings the doorbell with a delivery to make Santa Claus and his legendary sack quail. It has everything: drugs, equipment, machines, pouches of food.

  The in-home-care team is on familiar territory when it sets up in our home; the nurses have already been coming regularly to take care of Azylis. And I have to admit that more than once I made the most of their visits to ask them about a new bedsore, a sudden rash, a galloping heart rate. They willingly dealt with my anxious questions, but the situation wasn’t very easy for them so long as Thaïs wasn’t officially under their “jurisdiction.” She is now. From now on, they have free rein to take things in hand. And they won’t spare any effort.

  Indispensible and temporary. In-home care can be encapsulated in those three words. It isn’t a substitute for long, complicated hospitalizations, but is usually intended for patients on the road to recovery, giving them an opportunity to cut short or avoid a spell in a hospital. It is planned for a specific time period. A week, a month, perhaps two. But not much more.

  Thaïs’s case doesn’t fit this pattern. With her there’s no possible hope of improvement. No going back. No recovery. We can only hope for a reprieve. The deterioration in her state of health implies she will need in-home care for only a short time. But no one can predict the future, and the nurses know that. Just as they know what lies ahead for us. And for them. This doesn’t put them off, quite the opposite: They like this slightly different approach to their discipline, this system of administering treatments not to heal but to make life more livable. Their commitment is unfailing; the in-home care will last as long as Thaïs lives. The nurses reiterate this as soon as they see any doubt in our eyes: “We’ll stay with you right to the end.”

  In-home care makes our lives easier because Thaïs’s life is in professional hands. It’s a relief to see a medical team coming aboard our vessel. We can gradually go back to being parents rather than stand-in nursing staff. We can slot back into our proper roles, and things are much better like that. The nurses help us with bathing Thaïs, her treatments, and her day-to-day care; they evaluate her condition, chart its developments, and avert her pain. They act as an interface with the doctors, coordinate other professionals involved, and restock supplies of medication and equipment.

  Every day without fail, come rain, wind, or snow, one of them comes to visit Thaïs. I get used to these daily visits. Better than that, I value them, look forward to them. A bond is being established, a solid one. Not in the same way as at the hospital, where the setting can create a degree of distance. We’re at home here. We welcome each of them into our family unit quite openly. There’s nothing they don’t know about our bad days, our moods, the things tormenting us, and our pleasures too. They share our lives unaffectedly, discreetly, and affectionately because, of course, they become attached. How could they possibly not? You can’t fail to become involved when you care for a sick person in his or her own home. Not one of the nurses disguises the deep feelings she has for Thaïs. They even sometimes come in twos to tend to her. The princess requires it!

  Gaspard is standing in the doorway, his face downcast. Thaïs is moving out today. She’s leaving their shared bedroom to move into ours. Instead of us. It will be better for her, and for him: their room had started looking like a hospital with oxygen tanks, bottles of pain relief gas, tubes, monitors, and supplies. The area meant for playing ended up considerably reduced.

  Gaspard’s mouth twists sulkily.

  “I don’t care about having room to play. What I want is to keep my sister with me.”

  As I dismantle the frame of our bed, I go back over the reasons for this change. The official reasons: how difficult it is to care for Thaïs in a small room, the constant coming and going, the sheer quantities of medical equipment, having to respect his sister’s need to sleep, etc. Gaspard is not convinced, and he suddenly bursts into tears, saying “I want to stay with Thaïs, I want to stay with Thaïs” over and over. Only then do I find the courage to tell him what I wanted to leave unsaid.

  The psychologist and the in-home care team recommended that we separate them, but it wasn’t for practical reasons. At this stage in her illness, Thaïs’s life is hanging by a thread. She could go to sleep one evening and not wake up in the morning. Gaspard knows this without having to be told. He doesn’t even realize it, but he’s watching over her. He interrupts what he’s doing during the day to check whether she’s okay. He takes a long time to get to sleep in the evening because he’s listening to the machines. If he wakes in the night to go to the bathroom, he can’t help checking that his sister’s still breathing.

  One morning, between two slices of toast, he came out with: “Mommy, daddy, if I wake up one morning and Thaïs is dead, what should I do? Should I come get you or not?”

  My coffee mug slipped from my hand and broke, spilling all over the table. That was when we realized we urgently needed to change the setup.

  Gaspard must categorically not be the first person to see Thaïs dead. That’s not his job. It’s ours. We made the choice to keep Thaïs at home whatever the circumstances; we have to take responsibility for that decision and arrange our lives so that everything happens for the best for everyone.

  I explain all this to Gaspard in a version adapted to suit his age.

  “We don’t want to keep you away from her; we want to protect you so that you can go on living your life like a little boy.”

  “Yes but, mommy, that is my life, being with Thaïs. Afterwards she’ll be gone, and I won’t ever be able to see her again. Afterwards maybe I’ll be a grown-up, and it’ll be too late.”

  Yet again, I’m thrown by my child’s sound reasoning, and it puts me back on the right track.

  “You’re right, Gaspard,” I conceded. “Playing with your sister is part of your life. It’s also a wonderful thing. But you shouldn’t be responsible for her. We’re going to go ahead and move her into our room, but you can come and see her whenever you want, day or night. You can stay here as long as you like.”

  Not a day goes by when Gaspard doesn’t visit Thaïs. He often comes and sits beside her on her bed after school and tells her about his day. He laughs, and she smiles when he describes games in the schoolyard, the bread-ball fights in the cafeteria, and the teacher’s reprimands. We’re asked politely to leave when he tells her his little secrets, the ones we’re not allowed to hear.

  “I can tell Thaïs everything. It’s handy, she never passes on secrets. And I’m sure even if she could talk, she wouldn’t tell.”

  Sometimes Gaspard rushes into the room, gives his sister a quick kiss, and races back out. He goes into his room and closes the door, back in his own world. A world populated by dinosaurs with wise names, pirates armed to the teeth, valiant knights, and robots with superpowers. A world without leukodystrophy or bone marrow transplants or medical equipment. An innocent world fit for a boy of nearly five.

  26

  MY HEAD’S IN TH
E STARS. THE ONES TWINKLING ON THE Christmas tree in the middle of the living room. Gaspard’s arms are laden with multicolored garlands as he enthusiastically finishes decorating the tree. He’s humming appropriate tunes that he’s heard from the Little Singers of Paris. Silent night, holy night. The mismatched shoes laid out in a half circle around the foot of the tree are slumping under the weight of beribboned parcels. The table is scattered with golden star-shaped sequins and the places are set, all in red and white. Thirteen desserts arranged on large, well-spaced plates, are waiting quietly for our eager, greedy fingers. It’s nightfall; we light the candles and dim the lights. Christmas is coming.

  Loïc’s parents and sisters are here, joining us to celebrate Christmas. We promised Gaspard no one would look sad on this magical evening. We each have a bubbling flute of champagne in our hands as we throng around the tree, stationed beside our shoes laden with presents. Thaïs’s and Azylis’s are there too. We’ve put them here symbolically. I look at the carefully decorated parcels and feel a slight constricting in my heart. But no tears, I promise.

  When the time comes for us to explore these longed-for gifts, Gaspard asks tentatively: “My little sisters . . . couldn’t we? Just for this evening. To be together.” He’s asking for a truce on this special night. Loïc and I exchange a look, won over by his request. Surely anything’s allowed on Christmas night?

  Thaïs is sighing on her bed and Azylis babbling in her room. Well behaved, the pair of them. With no idea of what’s in store for them. In the living room, Zabeth and Armelle are making preparations for them to join us. They push the coffee table to one side, move the sofa, and free up some electrical sockets. Once everything is set up, they watch a very strange procession, more ceremonious than the arrival of the three wise men. Loïc comes in carrying Thaïs, as beautiful as Snow White in Prince Charming’s arms. Raphaëlle comes close behind with the feeding pump. Pierre comes next with one bottle of oxygen and another of pain relief gas. I bring up the rear with Azylis, pretty as a picture in her scarlet dress. Yes, I took the time to change her into a party dress in honor of this improvised outing. Once a coquette, always a coquette!