Two Small Footprints in Wet Sand

by Anne-Dauphine Julliand

  We’ve decided to take Azylis out of her room on impulse, but that doesn’t mean we’ve forgotten our instructions. We all disinfect our hands and put on masks. Azylis is wearing one too; it’s meant to cover her mouth and nose, but it overlays her whole face. We settle her in a chair completely covered with a transparent protective layer. Of course, she doesn’t want any of these precautions and concentrates on pulling off her mask. Successfully. In a matter of minutes, she’s taken it off, crumpled it into a ball, and thrown it some distance away. This victory isn’t enough for her: She pushes as hard as she can against the protective layer of plastic acting as a screen between her and real life. Soon, my darling, soon you can actually touch this world.

  Three, two, one, go! The signal is given. We can open our presents. Gaspard can’t wait any longer, complaining when the ribbon’s too tight and tearing at the wrapping paper. He marvels over each new find with increasing enthusiasm. He alone makes more noise than the whole rest of the family! Loïc shows Azylis her new toys from a safe distance; they haven’t been disinfected yet.

  Christmas shopping for Thaïs was a real brainteaser. What can you give to a little girl like her? Tricky. She’s not interested in dolls or jewelry or tea sets. I wanted to find things appropriate for her. In the end, I chose a perfumed candle and a CD of fairy tales. I open them for her, describing what I’m unpacking, and bringing the candle up to her nose. Her nostrils quiver. She can smell. . . .

  Gaspard comes and leans against me, his hands loaded with treasures and his eyes shining with pleasure. The magic of Christmas spreads through all of us. After dinner, the party goes on to an unreasonable hour. No one wants to break the spell. When we’re alone together, Loïc and I sit in silence for a long time, snuggled in a corner of the sofa, wrapped up warm in the depths of night. The bright stars are still twinkling. Not on the tree but deep in my eyes. It’s my best Christmas ever.

  The letter’s there, folded, sealed, and tucked into Thaïs’s health record. With these few words on the envelope: For the attention of the Emergency Department. This missive, signed by the neuropediatrician, was written a few days ago at our request. And a good thing too! It gives us much needed help this evening. When the ambulance team come through the door shortly after midnight, my hand shakes as I give them the envelope without saying a word. The emergency doctor opens it and reads it in silence. Once he’s read it, he slips it back in the book, saying, “I understand.” He goes into Thaïs’s bedroom.

  Thaïs is in a bad way, a very bad way. Her temperature is over 104°, but her hands and feet are freezing. Her pulse is at more than two hundred beats a minute. She’s unconscious. While the paramedics busy around her, I open the letter and look through it myself for the first time. In it the neuropediatrician gives a summary of metachromatic leukodystrophy (not all doctors are familiar with this rare pathology). He retraces the successive stages of Thaïs’s deterioration and makes a note of her current condition. He points out that the treatment she’s receiving is purely palliative. He says that we understand the inevitable nature of the illness and underlines, twice, the fact that we don’t want Thaïs to be intubated or put on a respirator. Lastly, he says that we want to be informed regarding how imminent the end is. The letter ends with one final recommendation: “Please do everything possible to relieve pain, which comes in devastating paroxystic attacks.”

  “Paroxystic” is the only word I don’t know. The rest is clear. The doctor has described the situation perfectly and expressed our choices faithfully. Difficult choices that Loïc and I discussed at length. We made them with our hearts and conscience. The decisions are now mapping out what happens next and limiting what we can do: We want to be with Thaïs and to have her as long as possible, but without doggedly keeping her alive; we’ll do everything to avoid her suffering but without curtailing her life. In other words, we simply want to respect the natural order of her time.

  The emergency doctor perfectly grasps our decision, and he respects it. So he explains the situation.

  “Thaïs is in a very critical state. Things could change at any moment, one way or the other. We’ll stay here with you if that’s what you’d like.”

  We gratefully accept their presence; it calms us.

  Despite how serious the circumstances are, no one loses composure. The ambulance team relieve us from administering treatments, and the nurses try to lower Thaïs’s temperature and steady her heart rate. They give her drugs, check her vital signs, and watch how these evolve. Loïc and I stay close to Thaïs, touching her, talking to her, and encouraging her to fight. Reassuring her of our never-ending love.

  After two hours, her pulse slows a little and her temperature drops. The emergency doctor waits for these improvements to be established, then we all agree that the team can go. They prepare to leave, making us promise to call them back if things go downhill again. I see them to the door and, just as I’m closing the door, the doctor turns and says: “Congratulations for your bravery. The bravery I saw in that room and the bravery expressed in the letter.” Then he turns away, visibly emotional.

  At dawn, Thaïs wakes as if nothing has happened.

  27

  DECEMBER 31. THE LAST FEW MINUTES OF THE YEAR ARE ticking away. The takeover is guaranteed to happen, hanging by the hands of the clock, ready to tip into the unknown, just like us. We pass the milestone with a handful of people, our invincible, indispensable nearest and dearest. Those who dare to wish us a happy new year. The few.

  Other people wouldn’t risk it for fear of making a blunder, of saying something that will hurt us. Some don’t say anything, prey to embarrassed silence. Others take a chance, backing away, stammering, and floundering. Through their clamped jaws we can just make out the words they’ve weighed up and chewed over. Hard to digest. They hope “that things get better this year, if that’s possible.” Better is the enemy of good . . . and my enemy too.

  If you knew . . . I wish I could beg you all, on my knees if need be, to wish us a good and happy year. You who’ve tirelessly given us your support; you who constantly regret how powerless you are to offer us relief. Here’s something that really would be of help today: Help us to get a foothold in hope! Do something to make us keep faith! Urge us to be positive!

  More than anything else, we need hope and optimism. They’re vital. You can start right now by wishing us a happy new year. And, please, lose the affected voice, the formal tone, the pitying looks. Wish it for us with all your hearts. Not just once but a hundred times. When you’re worried you’re overdoing something, you’re not doing it enough.

  We don’t know when or how things are going to happen, but we do know what the next few months have in store for us. Yes, we know that only too well. We’re not shying away from what is to come, but we don’t want to think about it now. The time will come soon enough. If we focus today on what lies ahead, we’ll be paralyzed by it until it comes and annihilates us. Paralyzed by fear only to end up drowned in despair.

  The worst is always a given. Okay. But the best can happen too, and it deserves consideration. So for this new year, please, don’t wish us better or good, wish us the best!

  There’s nothing fairytale-like about our lives. Yet here we are surrounded by pretty princesses: one of them, Princess Courage who’s turning into Sleeping Beauty; the other, the Princess and the pea, who regally rejects her feeds.

  Azylis is enough to give the weighing scales the blues. She weighs no more than eleven pounds, which, at over seven months, puts her in the abyssal depths way beneath the average curve printed in health records. In fact, we’ve stopped checking her weight. It only disheartened us more and did absolutely nothing to influence her appetite.

  She’s drinking, there’s no doubt about that. But toy-sized feeds that barely reach the one fluid ounce mark, if that . . . She struggles to finish them. We try every trick to get her to gain weight. As the quantity is inadequate, we go for quality: The dietician concocts cunning recipes to make her food richer, so that e
very mouthful has significant nutritional value. We also increase the number of feeds: Azylis has five feeds spread over a twelve-hour day. They’re actually not that far apart because she drinks slowly, very slowly, appallingly slowly. Each bottle takes at least an hour. For one pathetic fluid ounce. So, from getting up to going to bed, we spend five hours shut up in Azylis’s room, cursing away behind our masks for her to speed up the pace and take bigger mouthfuls, dreaming of seeing her develop a lusty appetite. Nothing makes any difference. Not our supplications, not distractions or promises or cuddles. We’ll just have to be patient.

  Ah, patience. A virtue with which we’re inadequately endowed. Azylis’s marathon feeds are pushing us to our limits. Loïc and I dread them a little more every day. I know perfectly well that Azylis isn’t just being awkward and that her trouble swallowing is an enduring consequence of chemotherapy. Even so, I can’t force myself to be patient. I have a horrible feeling I’m wasting time as I languidly count her tiny mouthfuls.

  Thérèse comes to our aid, almost in spite of herself, because one of her key qualities is exactly that: patience. Thérèse has a radically different attitude to time.

  She’s amazed that we always seem to be chasing our tails, complaining when we have to be patient, and cursing long lines. Thérèse never feels she’s wasting her time. Whatever she does, she gives it her full attention. And she feels that every moment of her life has a value. When she gives Azylis her bottle, she doesn’t keep her eyes glued to her watch; she delights in this time spent with Azylis, not thinking about the level of the milk or the minutes ticking by.

  The same goes for when she takes Azylis to the hospital. It’s a well-known fact that in hospitals you often have to wait . . . and for a long time. I’m soon muttering, getting irritable, and pacing up and down. Thérèse, on the other hand, sees this time spent in the hospital as an opportunity to meet interesting people, experience a new environment, and slow the frantic pace of her everyday life. For her, waiting isn’t empty time; it’s a state in its own right and can itself be a source of riches. Thérèse doesn’t put her life on hold when she has to wait around, she carries on living, just at a different pace.

  I watch admiringly as she does this, and persuaded by her view and by the serenity emanating from her, I decide to imitate her. A difficult apprenticeship, this patience business. It will take me several days, weeks even, before I reverse my tendencies and see the time spent on Azylis’s feeds as special time spent with my daughter. I restrain myself to avoid thinking about all the things I could be doing instead. I try to live in the moment, calmly and gently. Taking my time.

  This new approach, this precious gift from Thérèse, will be very useful to me in many aspects of life. Particularly with Thaïs.

  As if our schedule isn’t busy enough already, a stay in the hospital comes and introduces itself right at the beginning of January, between Azylis’s weekly visits. This time not in the hospital that’s monitoring the transplant but in the one that’s dealing with the illness. It’s an important appointment: The department run by the professor who specializes in leukodystrophies has asked to see her. The time has come to compare her state of health against the figures recorded immediately after her birth.

  So Azylis is going to spend three whole days under extreme surveillance. It’s a busy timetable: blood samples, MRIs, lumbar puncture, nerve conductivity tests, auditory evoked potential. In other words, a whole bunch of tests that don’t mean much to me but should say a great deal.

  I wasn’t expecting her reaction. I knew from experience that Azylis didn’t mind being in a hospital. She’s already spent so much time there that it’s become a part of her life, and she always accepts it quite naturally. But this time it’s completely different: Azylis experiences these seventy-two hours of hospitalization like a holiday camp! She’s radiantly happy at the sight of a new room, new toys that are inevitably more interesting than her own at home, and new nurses, who may well be hidden behind masks but are only too ready to make a fuss over her. All these novelties are opportunities for delight. The tests are intrusive and painful, yet Azylis doesn’t throw a fit about them. She cries just long enough, no more, then starts smiling again and making the most of all these new things she’s discovering. And seeing her blossoming like that, I too forget what’s at stake while we’re here.

  We’re both captivated trying to put together a wooden jigsaw puzzle when the doctor comes in, closes the door behind him, and announces the news: The illness has not developed over the course of the last six months. The results still show a slowing in the central nervous system, but no more than in July. As for the peripheral nervous system, it’s intact. Against all expectations.

  I can’t find the words to express my happiness, just like there were no words to describe my pain. The doctor doesn’t say anything either, happy just to smile as he savors the good news.

  We are all well aware that these good results don’t guarantee Azylis’s recovery. They don’t mean things won’t change for the worse in the future, but for now they’re the best we could have hoped for. For nearly a year I’ve been forcing myself to live from day to day. So right now I won’t think about what could happen later; I’m just going to make the most of this wonderful moment. I go back to playing with my daughter.

  28

  I TAKE A DEEP BREATH, CLOSE MY EYES, CLENCH MY FISTS TO give me strength. And here I go:

  “Gaspard, I have some bad news for you. Ticola’s passed away.”

  “What does passed away mean?”

  “It means he’s . . . um . . . that he’s left us, he’s gone away.”

  “Has he run away? Where is he now? When will he come back?”

  “He won’t come back, Gaspard. He’s . . . um, well, he’s . . . dead.”

  “Ticola’s dead? Dead forever? Oh no, mommy, that’s so sad.”

  The new year’s starting with tears: Gaspard crying over his faithful companion’s death. He hasn’t seen him for several months because Ticola didn’t come back to Paris with us. Having him in the apartment was incompatible with the hygiene requirements for Azylis, so Ticola moved to Loïc’s parents’ house in Brittany. Gaspard grudgingly accepted this separation for his sister’s sake and was hoping to see Ticola again soon, when the next school holidays came along. But the change of climate from the warmth of the Mediterranean to the wet Côtes d’Armor proved fatal for the little guinea pig.

  Gaspard’s tears dry up along with his grief. He wipes his eyes with the back of his sleeve and looks at me, frowning.

  “Mommy, why didn’t you tell me straight away that Ticola was dead?”

  “But I did tell you, Gaspard, as soon as I found out.”

  “No, I mean why did you say he’d gone away? It’s weird. You knew he hadn’t gone away because he won’t be coming back. But you still said it.”

  “Yes, that’s true, but I was worried about telling you he was dead. It’s a difficult word to say, at least it is for grown-ups.”

  “We’ll I’d rather be told ‘he’s dead.’ I’m not scared of death. Everyone’s going to die. Death’s not a big deal. It’s sad, but it’s not a big deal.”

  Why is it that we, the responsible, reasonable, wise adults, have lost this wonderful simplicity? We get tongue-tied with euphemisms, things left unsaid, and taboos. Out of a sense of propriety, or just fear, we banish words like “death” from our vocabulary. The word becomes unspeakable and unbearable to hear. And yet it’s an incontrovertible truth. And Gaspard, with his natural spontaneity, reminded me of that. I wanted to spare my little boy by skirting around the words, but that distressed him. He didn’t need me to protect him; he wanted me to console him. It’s not the words themselves that hurt, it’s the way they’re said.

  Our family will soon be confronted with a death oh so very much more painful and news so much more difficult to break. Thanks to this conversation, I now know how I’ll tell Gaspard when the time comes. It will take a lot of courage on my part to use the real words
, neither cagily nor too emphatically. But I certainly owe my son that. Now I know what I’ll tell him the day Thaïs goes away . . . sorry, the day Thaïs dies.

  29

  “YOU CAN KISS HER.” THE SENTENCE RINGS OUT WITH THE same solemnity as on a wedding day. But this moment is more moving than a marriage. The doctor tells me this at the same time as giving me the results of the last blood analysis: Azylis now has an effective immune system. We can drop the masks. I wasn’t expecting news like this when I came to the hospital this morning. It’s taken me completely by surprise and overwhelmed me. Like a girl about to have her first kiss.

  A bit shakily, I take off my mask. Azylis stares at me, puzzled, then her chin suddenly starts to wobble and her eyes mist over. She stares at me intently. She doesn’t recognize me: She hasn’t seen me without a mask for more than six months. Almost her whole life. Not me nor anyone else for that matter. She doesn’t know what a mouth is, or a nose. All she knows are eyes.

  I catch her eye to reassure her, talking to her gently. The doctor reiterates his invitation.

  “Go on, kiss her.”

  “Here, now, straightaway? I’m not ready.”

  “Of course you are, come on, you can do it. She’s a bit confused, it’ll comfort her.”