Gaspard certainly went to town: A pathway of little chocolate bunnies leads us all the way to Thaïs’s bed. And there we find a display worthy of a demented henhouse. Thaïs is brooding myriad eggs, each more colorful than the last. They run all along her legs, trace the outline of her arms, nestle in the crook of her hand, and form a crown around her head. What a spectacular image! Thaïs is smiling, delighted by this invasion. Not far from her, an army of chocolate chickens is standing guard around her machines. One of them, the boldest, has come a little too close to the oxygen equipment and is starting to melt.
Gaspard is in heaven. He’s realizing, to his delight, that he alone will be able to enjoy this haul. Which doesn’t take into account Azylis, who, in a quiet corner, is tucking into a golden rabbit without going to the trouble of removing its foil wrapping. Is she getting greedy? Well, that is good news!
There’s a happy atmosphere, each of us enjoying this moment of pleasure in his or her own way. At the end of this delightful day, I appreciate the cheerful Easter bells ringing just that little bit more. And I dread the knell that will soon sound in our house.
32
“NO!” IT’S HER FIRST WORD. AFTER “DADDY,” OF COURSE, but actually before “mommy.” She could have said “sleep,” “noonoo,” “biscuit,” or something else, like other babies. But Azylis definitely isn’t like other babies.
As the days go by and she comes in contact with the world, she’s revealing her personality. And what a personality! Azylis’s character is an explosive mixture, a clever combination of determination and good nature. She knows what she wants. Always. And what she doesn’t want. And when she doesn’t want something, nothing can make her change her mind. She keeps on smiling but doesn’t give in. Ever. Which is why no one’s really surprised to hear that radical “no” coming from her. Not a shy no, a resounding one. Everyone’s aware of how firm her decisions are; the in-home care nurses have nicknamed her “Miss No-No” because she often doubles up the interjection to make absolutely sure she’s understood.
Driven by this will and her lust for life, Azylis is making her way in the world. Or rather gamboling through it. Seeing her getting on so well, there’s nothing to betray the fact that she’s faced so many trials since she was born. And yet her first ten months were more eventful than many entire lives. She seems to have come through all this without trauma. There’s only one reminder that upsets her: masks. As soon as she sees someone in a mask, she’s terrified. It seems to be her only bad memory. She shows no physical traces of the months in hospital. Her features, which were once bloated because of her medication, are back to their natural delicate proportions; her short sparse hair has grown again, the tips forming adorable, soft fair curls; her complexion has taken on a warm glow, hinting that she might be lucky and inherit her father’s tanned tone; and the hard-won pounds have given her cheeks a delicious fullness.
Azylis has found her own place in life at home, taking part in all daily events. She doesn’t miss a single visit, waiting for deliverymen and looking forward to the visits by the physical therapist and the nurses. As soon as anyone rings the doorbell, she crawls over as fast as she can. When the visitor’s been identified, she goes ahead of him or her to Thaïs’s bedroom. Once there, she reaches up her arms, asking to be put somewhere near her sister where she can see. Then she sits still, mounting the guard, to make sure everything is done in the usual order.
Azylis knows by heart what each person does with Thaïs. She watches closely, not missing a thing, and imitates them perfectly. She lifts the corner of the sheet to check that the sensor for Thaïs’s oxygenation level is attached to her big toe. With a seemingly professional eye, she inspects the cover of the gastrostomy and how the feeding tube is attached. Then she checks if the oxygen tubes are in the correct position.
At times I feel Azylis is simply mimicking, without understanding or analyzing the implications of these details, like a little girl copying her mother by spooning imaginary food into a doll’s mouth, or pretending to change its diaper. But there are times when she knows that what she’s doing will soothe Thaïs: when she squeezes her hand to stop her shaking too much; when she wipes her mouth with a bib; when she presses her cheek against Thaïs’s and buries her fingers in her hair. In these precious moments, Azylis is nothing but gentle. Then she reverts to her boundless energy and goes off to live her life. And she’s happy, always happy.
I like routine. A year ago, I would never have guessed I would say that. Until now I’ve always dreaded being in a repetitive pattern. I sniffed out the least signs of one and fought them instantly for fear they might become entrenched. I made a point of creating a lack of rhythm in our lives. It’s so often been said that routine is the sworn enemy of a relationship. I don’t think that anymore. I now appreciate our humdrum daily life: It’s proof that everything’s going well. Let’s make the most of it. It’s a fragile balance, a precarious period of calm. For now, there’s no major setback or life-threatening fear to shatter the peace. So we’re savoring this drama-free, trouble-free blessing.
The key aspects of our schedule are well established. Thérèse is infallible, which is a good thing because over a period of six months she’s become indispensable. The in-home care arrangements are perfectly set up. The nurses, four of them in particular, have every detail of what Thaïs needs at their fingertips. The oxygen tanks, feeding pouches, and other medical equipment are regularly restocked. The willing help offered by friends and family is still going strong, frequently giving us a break when someone watches over Thaïs for us. The physical therapist comes every day to help improve Thaïs’s breathing; and, for some time now, Azylis has also been entitled to her own session at home twice a week, to help her catch up with regard to the slight delay in her motor skills accumulated during her months in isolation.
The results of Azylis’s latest trimonthly checks continue to be encouraging. As her brother so rightly says, she’s still getting good grades! There is a drop in her nerve conductivity, but it’s so slight that there are no grounds for concern. Well, I hope . . .
Gaspard carries on in his own sweet way, without a care. We can’t get over how well balanced he is. He’s happy at school, at home, at rugby, in life. He’s never short of praise for his sisters who, in his eyes, are the prettiest girls in the world . . . and the only ones worthy of any interest, come to that.
Thaïs is staying on an even keel. Her days are all very much alike, sometimes disturbed by a spike in temperature, abnormal breathing, or an irregular heartbeat. But the crisis passes of its own accord every time, and life goes back to normal.
Loïc is fulfilled in his work; he’s even forging ahead and nurturing new ambitions. That’s a positive sign of newfound hope in the future. As for me, I’m gradually succeeding in establishing a balance at home, with a snippet of peace and hope.
Yes, routine’s a good thing.
33
THERE ARE SOME INTUITIONS THAT DON’T FAIL. A MOTHER’S are infallible when her child is slipping away. I don’t have to wait for the nurse’s diagnosis to grasp how extremely serious the situation is. I don’t need the frantic vital signs alarms to realize how imminent the end is. On this sunny Pentecost Sunday, Thaïs is living her final moments.
The previous day, so easy and lighthearted, suddenly seems far away. Yesterday, Thaïs woke with a cool complexion, breathing peacefully. Everything looked so promising that we dared do something: We played truant for a few hours for a very special occasion. Gaspard, Loïc, and I put on our smartest clothes and headed off to celebrate Gaspard’s godfather’s wedding—without the girls. And with no regrets or concerns; our daughters were in safe hands at home with their grandparents who were pleased to have this time alone with them.
The day went wonderfully well. We weren’t very far from home, ready to come back at the first warning, and of course we called for updates two or three times, perhaps more. The answer on the other end of the line was always the same, a reassuring “nothing to r
eport, everything’s fine, make the most of it.”
Opportunities like that are few and far between, and all the more valued for that. So the three of us did the party justice late into the night. We slept in a hotel, prolonging our escapade into the following morning, long enough for Gaspard to taste every flavor of conserve at the gargantuan breakfast. We were home before noon, delighted by our celebratory break. And delighted to be reunited with our beloved girls.
The degree of emotion in our reunion implied it had been a long separation. We kissed Thaïs and Azylis as if we hadn’t seen them for ages. Yes, sometimes twenty-four hours can be an eternity. . . . Azylis greeted us with a recital of spirited cries. Thaïs’s enthusiasm wasn’t as noisy as her sister’s but still appreciable. We did the right thing going away, everything was fine in our absence. And we did the right thing not lingering too long before coming home, because shortly after we returned, the storm hit with no warning rumble or roar of thunder.
It’s all over. Thaïs’s heart is slowing with every beat. Her breathing is slipping into endless-seeming periods of apnea. We hang onto the silences between her breaths. Every inhalation could be the last. There’s nothing more the nurse can say. She shakes her head to mean she’s powerless, and tiptoes out, her heart in shreds, to respect the intimacy of this goodbye.
As the color drains from my adored daughter’s face, all sense of calm is lost to me, all faith abandons me. I’ve prepared for this fateful moment, but I’m not ready. How could anyone be? My mind baulks and rebels and revolts.
No, not this. Anything but this.
Stay a bit longer, my princess, my Thaïs, my lovely! I can’t let you go. I haven’t the courage to go with you, and I haven’t the strength to live without you. I’m clinging to your arm, your neck, your limp body to hold you back. Just a bit longer. A little bit.
Don’t leave me. Not now. Not so soon. I want to keep you. Forever. To look after you, watch over you, cherish you, and love you. I never tire of you, your silences so full of meaning, your childlike smell, your soft, soft skin, your honey-colored hair, your half-open hands; all the little things, the sounds, the noises, the movements that are you. And that I love.
I beg of you, my little one. Hold on, fight. I’m nothing without you. You’re my sunlight, my horizon, my gentleness, my strength, and my weakness. You’re my rock and my rock bottom. My love.
Stay a bit longer, just for today. And tomorrow. And the next day.
Did she hear me? Was she aware of the desperate supplications from every heartbroken inch of me? I’ll never know. Either way, Thaïs’s soul has retraced its steps somewhere between heaven and earth and slipped back into the wearied body it was breaking away from.
Against all expectations, Thaïs is gradually coming back to life. One beat after another, one breath after another, she’s climbing slowly, hesitantly back up the path, balancing on a fine tightrope. I don’t slacken my grip or stop my supplications. Quite the opposite: As hope drives the ashy gray from her cheeks, I redouble my pleas.
It will be several trying hours before we conclude that Thaïs is out of danger. The nurse and doctor who arrive at this point heave a sigh of relief along with us. They know that the alarm was all too real. But the secrets of life and death are often beyond man and his extensive knowledge. No one, no doctor, however competent, no professional, however informed, no parent, however vigilant, no one can predict the day or the time. And perhaps it’s better that way . . .
The ordeal of this imminent death, of this immeasurable suffering and the abyssal pain in the pit of my stomach could have destroyed me; but it will only make me stronger. And free me from a burden: No more good resolutions of heroism, stoicism, and bravura! I’ve stopped preparing for Thaïs’s goodbye. It’s a waste of time; I know that now. And that’s not what counts: It doesn’t matter how I react the day she leaves us. I’ll be there as I truly am, just a mommy with all her suffering, all her fears, all her tears, all her weaknesses, but also all her love.
Loïc will be there too, I know that. He’ll never be a deserter, despite the trials, like this afternoon’s. When a heart is contorted with pain, a desolate loneliness sets in because it’s impossible to imagine anyone else suffering as much—even the person crying alongside you. When Thaïs was dying, Loïc and I were aware of a divergence, each isolated in our own pain. He was the father unable to protect his child, I the mother unable to hold onto her daughter’s life. A simple crack cleaved between us, a crack that could have become an impassable crevasse if we hadn’t guarded against it. It takes more than huddling against each other to stay close. You have to find the strength, in the very heart of suffering, to dry the other’s tears. To turn to that person and understand how he or she is experiencing the pain. We identified this disastrous fissure and repaired it—by loving each other, talking to each other, and listening to each other. By sharing each other’s pain.
From here, more in love than ever, we need to take another step. Thinking we’d lost Thaïs forever sheds new light on our future. We saw her life deserting us; we’re now going to savor every moment with her as a reprieve, a blessing, a priceless gift. I have to admit that, until now, as night fell every evening, I couldn’t help but think, We have one less day left with her. Now, as it grows dark, I want to be able to say, “Today we had one more day with her.” It’s just a question of perspective, but it changes everything. We’re going to make the most of Thaïs. Right up to the last moment. Then we’ll have the whole rest of our lives to come to terms with her absence.
34
THE FLAME WAVERS, DIPS, HESITATES, THEN GOES OUT WITH a small plume of black smoke. Her face full of concentration, Azylis has just blown out her first candle, all on her own like a big girl. A pretty pink candle standing upright in the middle of a huge cake. Azylis is triumphant as we clap and cheer around her. Her smile glows with happiness and pride. Ours too. One year. She’s already one year old.
You could summarize the first year of her life like this: a week of chemotherapy, a stem cell transplant, two blood groups, three months in a sterile bubble, four hospitalizations (per month), five different hospitals, six months in isolation, fifteen paltry little pounds, nine physical therapy sessions (per month), ten minutes to swallow each mouthful, eleven MRI scans, a succession of scans and lumbar punctures, twelve months of ordeal . . .
Or like this instead: one smile, two big mischievous eyes, three little teeth, four limbs crawling at top speed, fifteen good pounds, eight seconds standing without support, nine months at home with us, ten agile fingers, eleven hours of peaceful sleep (per night), twelve months of happiness.
Happy birthday, my beautiful Azylis!
The last days of June bring the school year to an end. Gaspard puts away his satchel and tidies away his books, pens, and pencils. He sighs with satisfaction, “Holidays at last!” I don’t have the same feeling of relief. The advent of these two summer months has me perplexed: What are Gaspard and Azylis going to do with all this time? We also need a change of scenery, but we haven’t made any plans so far. I should have taken care of it sooner, but I’ve kept putting it off for want of a satisfactory solution and the necessary courage. Thaïs’s condition chains us to Paris. I could send Gaspard and Azylis to stay with their grandparents, but I don’t really want to be separated from them. So how are we going to get out into the fresh air?
A plan is emerging, a slightly crazy one. Some very good friends have invited us to spend a week in Sardinia in July. The invitation’s tempting but strikes me as far from achievable, particularly as Thérèse will be on vacation at the time. Who will watch over Thaïs? No, it’s really not imaginable. Loïc doesn’t see it like that and announces that nothing’s impossible. He’s not inherently wrong; it would be possible but difficult to set up. Firstly, from a practical point of view, we’d have to find volunteers to stay with Thaïs while we’re away. We put out some feelers with friends and family, and our enquiries meet with unexpected success. Every person we mention it to gi
ves a positive response, though not without imposing certain conditions: They want an exhaustive list of instructions for Thaïs’s treatments, routines, and requirements. Loïc offers to take responsibility for the training program. With all his characteristic professionalism, he draws up precise instructions, written like a user’s manual, complete with tables and a daily “route map.”
With the practical aspects arranged, there is still one outstanding detail, and it’s not a minor one: convincing each other. Of course we’re sure of the benefits this trip will have, but it’s so painful leaving Thaïs . . . the pain is psychological and physical. Like an amputation.
What were we thinking, what were we thinking going away like this, such a long way away? Without her! How thoughtless!
Gaspard is at the far end of the departures lounge with his nose pressed against the huge window, jigging with excitement: “Mommy, look at that plane there. It’s huge! Look, mommy, look!” I don’t get up from my molded plastic chair. I’m bogged down in misery, my stomach in knots. It’s torture for me being away from Thaïs, knowing she’s back there, in her room, sleeping on her bed, so beautiful, and not being with her. It’s my duty to be by her side, not basking in the Italian sun. I have no right to go off like this and abandon her. What if she dies while we’re away? Oh my God, what were we thinking?
Maybe it’s not too late to cancel, turn around, and go home to her, quickly. I glance over at the window where Gaspard and Azylis are watching the choreography of planes. They look so happy. . . .
Two Small Footprints in Wet Sand Page 12
