Two Small Footprints in Wet Sand

by Anne-Dauphine Julliand

  The doctors are in the starting blocks to initiate their search. They need only one thing: our consent.

  “Transplants are not without risks and consequences.” We know this, but the doctor makes a point of reminding us. We have to make our decision with full knowledge of the facts. Of course the possibility of this treatment was mentioned during my pregnancy. We’d already weighed up the pros and cons and were prepared to launch into the adventure. It’s easy picturing situations when they’re abstract; it all gets more difficult when they become real. Azylis is here now. Truly here. So what to do?

  Some patients die during the transplant process. You could say that doesn’t change much in this case because, whatever happens, if we do nothing, Azylis will die in a few short years. But the two instances are different: on the one hand, because every day spent with her now matters; on the other, because if the transplant goes badly and Azylis dies, we might never forgive ourselves for making that choice and might feel directly responsible for her death. It’s the fraught debate between acting and leaving things be. Between guilt and responsibility.

  Another doctor reminds us that most patients who have had these transplants are unable to have children. This point may seem trifling, but we take it very seriously. You could look at this very pragmatically and say that, if Azylis doesn’t have the transplant, she couldn’t possibly have children because she won’t survive to be old enough. But here too the situation deserves careful consideration; if we do something to try to cure her, we would actually be intervening in the whole process of the illness. And we don’t know what sort of modifications this could trigger. If Azylis is cured, we would be happy with our choice. If she dies, we would bitterly regret our decision. But if she isn’t completely cured . . . If she develops the illness up to a certain point and then stagnates for the rest of her days, even though she might not be in any danger . . . she might resent us for intervening. She might hold us directly responsible for her infirmities and for her being sterile. Perhaps it’s best not to intervene.

  Of course we think it over, but in our hearts and our conscience, we believe it is our role as parents to try the transplant. Those of us who have children take action on their behalf every day . . . we make decisions that affect them. And we do it with no sense of guilt, because we believe to our very depths that it’s for their good. We don’t ask their opinion before feeding them, dressing them, or washing them. Making them better when they’re sick . . . or trying to. We are guided by our instincts as parents.

  I remember some wonderful words from Professor Jean Bernard, an eminent oncologist. He would say you have to “add life to the days when you can’t add days to the life.” This quote inspires me in the commitment we’re making for Azylis today. We’re going to do everything to add some days to your life, my darling. Then we’ll do everything to add some life to your days. Whatever happens.

  10

  WHAT A CRUEL DAY. THE MARQUEES ARE UP, THE FLOWERS arranged, the tables set. The sky promises to be clement on this beautiful Saturday in July. Thank goodness: Loïc’s younger sister is getting married today. The house is buzzing like a beehive. All are getting dressed, getting ready, checking themselves in the mirror, putting on their finery. I unfold my dress, my head full of thoughts. I’m so out of place here. My colors are all faked, save the red of my swollen eyes. And the grey of my half-mast heart. I’m in mourning. In mourning for a future full of smiles. In mourning for my dreams. What an ugly irony of timing! I really don’t feel like partying. My heart and body aren’t up to it. Azylis is eight days old, and we’ve known for a scant forty-eight hours.

  I spot Gaspard in the distance playing with his cousins in his pageboy outfit, which is already covered in dirty marks. He’s not the same little boy as yesterday evening, the one I hugged with all my might to soothe his heartache. What a painful memory that is: When we told Gaspard and Thaïs . . . when we told them that their baby sister was sick too, Gaspard fell apart. He’d transferred so much hope onto this baby. I read in his eyes the same sense of emptiness that haunts me.

  “I can’t be the only child in this family who gets to be a grown-up. I want to grow up with my sisters. It’s not possible, mommy. Azylis can’t be sick.”

  We tried to reassure and comfort him. In vain. No words can get the better of sorrow on that scale.

  As for Thaïs, she was quite silent. Then she leaned toward the tiny baby and wrapped her in her little arms. She looked at her intently and murmured, “I love you, baby.” That was it.

  Gaspard was calm when he woke this morning. The night had driven away his pain.

  “It’s the party today. We’re going to have cake and Coke and music. I want to go to bed the latest in the whole world.”

  I would have preferred to stay in bed and avoided going through with this day. The guests are starting to arrive. They look happy. People are kissing, chatting, laughing, clinking glasses. And I’m crying. But I am here. I’m not going to stalk about like a ghost or be a party-pooper. If I don’t want our lives to turn into tides of tears, I need to learn to make the most of celebrations, recognize beautiful things, and appreciate the good times. And whatever my heart may think, today is party time. Which is why, as I put on my dress, I also put on a fitting smile. A bit forced perhaps. Who cares. I notice Loïc has reached the same decision: He’s managed to overcome his sadness to be sincerely delighted for his dazzlingly happy sister. His strength gives me courage.

  Azylis is so beautiful for her first outing into the world. Guests come to admire her one after another, each offering a wonderful compliment or a kind word. No one mentions her illness. By reading between the lines of a glistening eye, a slight pressure on my shoulder, or a more emphatic kiss on my cheek, I sense their unanimous compassion. I know that everyone dear to us is hurting today. Hurting and celebrating, like us. What better proof of their solidarity than their smiles. They know Loïc and I are using every ruse to look happy, so they’re striving to support us in this effort. And for the first time that day I really smile. A smile full of tears, the good sort this time.

  The cool of evening is closing in. Through my open bedroom window I can hear the sound of the festivities. Gaspard and his father are doing the party justice. They won’t come in till dawn, happy and exhausted. Azylis is asleep, curled against my breast. Comfortably settled on my bed, I hum faraway tunes as I watch my pretty little girl. It feels good.

  After that short family weekend, Azylis is hospitalized in Paris for two days of intensive testing. It’s an opportunity to make a full assessment of her state of health; this will act as a reference point for the months to come. At this point the doctors notice that, even at this very young age, the illness is making its mark: The speed of her nervous conduction has already slowed imperceptibly. Azylis is also given an in-depth blood analysis to establish the precise composition of her blood; and, using that, every stem cell bank in the world will be quizzed in the hope of finding a bag of compatible blood somewhere.

  While we are at the hospital, the professor gives us some disappointing news: The transplant can’t happen in Paris. We’re devastated; one of the Paris hospitals that usually carries out this sort of procedure is only five Métro stations from our apartment. Instead, for several months, we’ll have to be expatriated more than a thousand kilometers away—in Marseille! Everything gets more complicated. Where will we live? What about Gaspard’s schooling? And Loïc’s job? How will Thaïs react in an unfamiliar environment, when she so needs to know where everything is? It’s difficult to imagine making this trip in these circumstances. But we don’t have any choice. Azylis’s life depends on it.

  The most urgent concern is to find somewhere to live in Marseille. The hospital offers us a room in the Parents’ House, but it’s not big enough for the whole family. And our absolute priority is to stay together. So we immediately send out an appeal. The grapevine works overtime, and it’s not long before answers start coming in. It feels as if the solution falls from the sky: Chant
al, a distant aunt I’ve never met, opens her home to us, and her heart. She doesn’t know us but offers us her house in Marseille. A house big enough for all of us. And it’s free until the end of September. More than we could have hoped for. Chantal doesn’t even ask to meet us first; she instinctively trusts us. She is acting out of pure and simple generosity. I didn’t know that still existed. Thank you!

  There’s more good news: The professor has already found a stem cell sample that matches the characteristics of Azylis’s blood. It’s in the United States. It’s touching to think that at some point, somewhere in the United States, a mother gave some blood from her newborn’s umbilical cord and that this blood could save our little girl today. Thank you, in English this time!

  Everything is happening quickly now. We’ll be moving any day, and Azylis is expected at the hospital in Marseille in early August. There she will have an operation to insert a central venous catheter, a kind of drip implanted deep under the skin. Then, on August 8, she will move into her quarters in the sterile room. For an indefinite period. Meanwhile, we don’t want to waste a moment of our time as a family. We imprint ourselves with each other’s presence. This precious time is cut short all too soon. Thaïs’s condition takes a brutal turn for the worse.

  11

  THIS ISN’T JUST CHANCE, I’M SURE OF IT.

  Thaïs held on until we came home from the hospital before she stopped talking. I think she even kept a reserve of tender words in the last days. She’d never said “I love you” so often. Then one morning, she stopped talking. Forever. The shock is appalling! We’d certainly noticed that, for some time now, she had to work for every word, but we couldn’t have guessed that phase would end so soon.

  Confronted with my mute little girl, I feel sad and lost. Having only recently turned two, she was just beginning to talk properly. Her last words still ring in the air, her stammered “daddy”s and “mommy”s. She’ll never say them again. So how are we going to communicate? Being able to say what we want and like and think is so important. We need to talk if we are to express ourselves and understand each other—talking brings people together. I feel intimidated and pained by Thaïs’s silence. But she doesn’t. Here again, she accepts events completely naturally. She isn’t thinking “never again” or “forever.” She’s living in the moment. And at the moment she can’t talk. I feel like screaming for her, but she looks at us in silence, and that silence seems to say, “Trust me.”

  Do we have any choice but to follow her and give her the trust she’s asking of us? We agree to follow blindly as she initiates a different form of communication. With the passing days, she teaches us to converse another way. She forces us into silence and invites us to hear something other than words. She modulates the sounds she produces, makes her expressions more intense and her gestures more precise. She develops a whole palette of smiles, movements, and thoughtful signs. She creates another language—her own. And thanks to this language, we can accept her silence into our lives. In order to understand Thaïs, we have to forget we have the gift of speech. Our every sense is on the alert: We watch her movements, decipher her sighs, and decode eye contact. Soon we’re no longer even aware she’s not talking. We feel as if we’re hearing her, and we understand her perfectly. Thanks to her, we have a glimpse of how vast communication is beyond the realm of words.

  I no longer miss her “I love you”s: I can’t hear them, but I can sense them and feel them.

  Sadly, Thaïs’s decline is not restricted to the power of speech. During this already very trying month of July, I’m woken with a start one night by a premonition, and I go to her bedroom. I find her lying in bed burning up, her eyes rolled back and her body shaking. The emergency doctor diagnoses a state of severe dehydration and undernourishment. She’s hospitalized immediately, and there the scales reveal the brutal truth: eighteen pounds! Thaïs now weighs only eighteen pounds!

  In the last few weeks, she hasn’t eaten much, very little in fact. Like not being able to talk, she’s had a lot of trouble chewing and swallowing. We consulted a doctor who prescribed some high-protein creamy desserts. But that wasn’t enough—to the point that her life is now threatened.

  It’s unthinkable: Thaïs was slowly leaving us, and we hadn’t noticed how serious the situation was. It isn’t negligence; we just didn’t know. It was outside our scope as humans to grasp the scale of the disasters caused by this wretched illness. Even if you know what it’s going to trigger, you can’t integrate that into everyday life—particularly as Thaïs’s condition isn’t fixed; it keeps deteriorating, which means we have to adapt all the time.

  This is the biggest problem with degenerative diseases: Nothing can be taken as a given. I think it’s even harder to accept with respect to a child. The illness brought Thaïs to a halt right in the middle of the learning process. Walking, talking, potty-training, independence, all areas in which she had recently progressed. And they were all losing momentum already. I see her life as a grim bell-shaped curve: a gradual climb sharply interrupted and diving into a vertiginous fall. Yes, Thaïs’s decline gives me vertigo. And this won’t be the last of the pain . . . or the new discoveries. There it is echoing deep inside me again: “If you knew.”

  From now on, we need to be more vigilant and take seriously her every fever and her every change in behavior. For the time being, Thaïs needs to climb back up a nasty slope. She’s so weak that she’s struggling. She’s given nourishment through a drip, and sometimes manages to eat a few mouthfuls. Each one is a victory. After a few days in intensive care, she is transferred to be near the medical team who usually take care of her. I can’t go with her, because I’m getting ready for our imminent trip to Marseille. This separation is torture for me: I was so afraid of losing her, and now I’m worried about not being there for her when she needs me. This constant wrenching heartache. I ask my mother to stay by her side. She won’t leave her for a moment, so I have nothing to worry about. Thaïs is well looked after in medical terms, mom is taking wonderful care of her, and Loïc spends every evening with her. I know she’s in good hands. I just wish she were in mine.

  12

  WE ARRIVE IN MARSEILLE AS OTHERS MIGHT STEP INTO A boxing ring: with fear in their bellies and a furious determination to win. But unlike boxers who are masters of their discipline, we’re heading into battle blind. There are so many unknowns for us. We’ve had no preparation for this sort of situation. Who has? The fight is hopelessly weighted against us. We feel as if we’re facing an elite trained army. David was lucky he had only one Goliath to tackle. . . .

  Amongst these hostile prospects, Chantal’s house feels like a haven of peace. It’s a little corner of paradise right in the middle of Marseille, with a pretty, shaded garden and cool, spacious rooms. The place emanates calm and tranquility. We instinctively know we’ll feel right here, within these welcoming walls. This is where we’ll come to draw new strength after days and nights of strain at the hospital.

  Chantal isn’t here, she left the keys with her daughter-in-law, Laurence, who shows us around the house. She greets us with the characteristic warmth of southerners.

  “Welcome! You must treat this like your own home. And if you need anything at all, we’re just next door.”

  The tone is set: We feel we’re among family.

  Gaspard is thrilled; he’s always dreamed of living in a house. He’s hardly out of the car before he’s grabbed a big stick and gone off hunting for ants in the garden. We can hear him in the distance crying, “This is going to be great!” How wonderful to be so carefree . . .

  My parents move in with us in Marseille. They were the ones who insisted on coming. When they first told us this plan, we had our reservations: We didn’t want to implicate them too deeply in this risky adventure; we wanted to spare them. But their decision proved intransigent. And wise. They knew perfectly well that the two of us, Loïc and myself, couldn’t look after our three children alone, for simple, logistical reasons: We don’t have the gift of ubiquit
y! How could two of us manage school runs, meals, half days, weekends, as well as trips to and from the hospital? And all the unknown factors? It was unworkable, without an unrealistic choreography of tasks and a degree of energy we didn’t have. So we accepted their offer very gratefully. In order to be sure we’re never let down, they’ve arranged with my parents-in-law to work on a relay every two weeks, for as long as our exile in Marseille lasts.

  My parents have taken the first watch. My father is particularly happy to be here: His southern blood instantly feels at home. He can’t wait to introduce his grandchildren to the place where he was born. We each move into our quarters in the house. Once the mountain of suitcases has been unpacked, we savor a well-earned rest, particularly as tomorrow is likely to be very testing: Azylis is going into the hospital, and we’re to be reunited with Thaïs, but not at home, unfortunately. She will be transferred to the same hospital as her sister. Two floors down.

  This corridor has no secrets from me now. I’ve walked up and down it a hundred times. Every time the door to admissions opens, I run over: I’m waiting for Thaïs. Loïc went back to Paris early in the morning to accompany her on the journey. I can no longer control my impatience; I’ve already called him several times to know where they were. The last I heard, they had finally reached Marseille. They should be here any minute . . . but don’t the minutes go slowly when you’re waiting! It’s more than a week since I’ve seen Thaïs; I can’t wait to see her. I hear the door to the corridor open again. I turn round. And there she is.