No, the little foot I love so dearly will definitely never turn outward again. But that won’t get in the way of Thaïs’s happiness. And it won’t stop us from loving her. When it comes down to it, that’s all she asks.
A dull thud. Thaïs has just fallen over. Again. It happens more and more often because she has trouble sitting upright now. She is on the floor in the bedroom, in the middle of a construction game that was demolished by her fall. She’s crying, and I go to help her. Gaspard is beside her, trying to sit her back up. I can see how upset he is but can’t help reprimanding him, as I do every time Thaïs hurts herself when they’re together. Once again I tell him that he must keep a closer eye on his little sister. I explain for the umpteenth time that she’s sick, she’s not as tough as he is. I take Thaïs in my arms to comfort her, and leave Gaspard on his own, crestfallen, in the middle of the room.
The sound of sobbing reaches me in the living room, so I go back into Gaspard’s bedroom. He’s on his bed, crying, with his head buried in his pillow. I’ve never seen him so desolate. It breaks my heart.
“Mommy, it’s too difficult for me having a little sister like Thaïs. Not because it’s Thaïs but because she’s sick. My friends are lucky because their sisters aren’t sick. I always have to be careful when I play with her. It’s too hard for me. I’m not her daddy, I’m not her mommy, I’m not a grown-up. I’m just a kid. Kids don’t look after other kids like that. It’s the grown-ups who do that. I don’t want to play with her anymore, because I’m too scared she’ll hurt herself and I’ll get into trouble. But it’s not my fault if she falls over, it’s because she has leukodystrophy.”
I sit down next to him; he’s knocked the breath out of me. He is so right. . . . I’d never thought of it. Or at least not like this. I have to recognize that I’ve lost all objectivity. My primary concern is Thaïs’s wellbeing; I see situations only in relation to her because I’m so worried about her. And it’s true, I project my concerns onto Gaspard by giving him responsibilities beyond his years. He’s not even five years old. . . . My behavior means he can’t be natural with Thaïs. He’s afraid he won’t be up to the job, won’t be able to stop his sister from hurting herself, and will disappoint his parents and be scolded. Of course, a brother shouldn’t be responsible for his little sister, whether or not she’s sick. I’m sorry, Gaspard. You go back to being a little boy.
He’s the one who comforts me. And finds the key: “I know what we’re going to do, mommy. When I’m with Thaïs and something goes wrong, I’ll shout ‘Problem!’ and you can come see what’s going on. And you’ll take care of Thaïs. Then I can just play with her. You know, mommy, I really like playing with my little sister—even if she is sick—because I love her with all my heart.”
6
A KICK WAKES ME WITH A START. I FEEL AS IF I’VE ONLY JUST gone to sleep. I look at my watch: four in the morning. Not just a feeling, then . . .
The pedaling session starts again, even harder. My baby definitely doesn’t feel like sleeping and has decided it wants me for company! I press my hands onto my stomach. I want my hands to communicate to this little creature bursting with energy, to communicate my love . . . and all the things I can’t tell it.
Pregnancy is often described as a timeless period. Some women have a sense of completeness, achievement, being filled with the promise of a new life. The last few months have been very grueling for us. And anticipating this baby’s arrival hasn’t allayed our fears. Far from it. On March 1, it only took a few words to annihilate the present and mortgage our future. A one-in-four chance that this baby will also be sick. . . . A one-in-four chance that the nightmare will begin again. And it will be the same for any child of ours. We could look at things positively, saying that it means only a 25 percent risk . . . but that’s 25 percent too much. Even one in a thousand is way too much for a parent.
I so envy mothers whose only concerns in those nine months are how much weight they’re gaining and what name to choose for their little cherub! I envy them, and I resent them, given that I can’t look at my stomach without shuddering in trepidation. They’re so lucky! What a luxury their heedless expectation is! Better for them to stay that way; if we all had to bear in mind every possible disease and malformation, no one would have children at all.
All through March and April, I don’t open my heart for a moment. I keep it closed so as not to dwell on my pregnancy. I try not to become attached to this tiny thing. Whatever happens, I mustn’t think about the baby. Or I mustn’t think about it finally being born. And us knowing. If I don’t think about it, it won’t hurt. Love makes us vulnerable, so I’m not letting myself love my baby; this makes the situation bearable.
Each time my maternal instinct resurfaces, I bury it as deep as I can. I want to hold back my love like I hold my breath. I’m torn in two by these conflicting emotions and contradictory feelings. Loïc is very aware that I’m trying to maintain some distance between the baby and myself. He can see my distress and feels it himself. He too is struggling to picture this life that’s growing silently, even though, under normal circumstances, he’s such an attentive, hands-on father: the sort who talks to his baby in his wife’s womb, gets emotional at each scan, notices every kick, and impatiently counts down the days to the due date. We’re saddened by our situation; we wish we could be thrilled and could prepare happily for our baby’s arrival. So we reach a decision, one that may seem quite ordinary but is of paramount importance to us: We’re going to ask whether the baby is a boy or a girl. And we’re going to start calling it by its name from then on. By doing this, we hope to make this little creature more real, more a part of our lives.
“It’s a girl.” The technician pauses out of respect for our show of emotion. We’re happy. Happy and sad at the same time. It’s not easy picturing another little girl beside Thaïs. One’s arriving, the other’s leaving. . . .
We’ve chosen a name, and now we say it for the first time, in unison: Azylis. Azylis represents life, the future. And hope. In the silence of those sleepless nights when little feet drum against my stomach, I can’t help feeling it’s not just by chance that we’re expecting her at this particular juncture in our lives. Azylis is here to rebuild our confidence. I cling to this idea and the hope that it offers. I feel I can hear her small voice whispering: “I’m here. I’m alive. Everything’s fine.”
I will be induced two weeks before my due date. We were given the opportunity to choose the date and decided that Azylis should arrive on June 29. A symbolic date for Loïc and me: We will have loved each other exactly seven years to the day. For better. And for worse.
Thursday June 29, three thirty in the afternoon. A breath. A cry. A life. Azylis is here, pink and adorable, screaming and alive. All at once, and with no warning, the dams break, love floods over me. I love you, my tiny little girl! And everything is forgotten: the sword of Damocles over your head, the horrors of the illness threatening you, the nights of anguish and hours of doubts, the concerns for the future, and my fear of love. I stop holding my breath. I can’t hold my feelings back any longer. I love you!
Azylis makes time stand still in a moment of absolute happiness, as if the sun has suddenly, magically driven away the storm. There are no more signs of sorrow or rain. That is the miracle of life.
We cry hot, fat tears with the reassuring taste of emotion and joy. Yes, right now, we are truly happy.
7
I DON’T KNOW WHICH IS WORSE, BEING TOLD THE NEWS OR waiting to be told. Waiting requires disconcerting passivity: Everything is still possible, even the unthinkable. Waiting fuels doubts but doesn’t give you the energy to throw yourself into the battle, even if you know in advance you won’t win.
I watch Azylis sleeping in her Plexiglas crib, and I don’t know what I’m seeing: hope or pain; a carefree life or the illness. I try to find the answer myself: Azylis looks more like Gaspard than Thaïs, so she should be spared. But genes don’t follow that sort of logic. I take a different tack: If the nurs
e comes in before I’ve counted to ten, then Azylis isn’t sick. But genes don’t comply with superstition.
I can’t get to sleep tonight, yet again. The joy of her birth is still with me, but it’s darkening under an ominous shadow: fear.
Gaspard and Thaïs come this afternoon to meet their little sister. They both melt. Gaspard soon abandons the baby to focus completely on the Zorro costume we’ve given him to celebrate the birth. Thaïs, on the other hand, doesn’t pay any attention to her fully-equipped new stove. She has eyes only for Azylis, stroking her and endlessly repeating, “Baby, I love you, baby.” It’s very touching watching these two little girls meeting for the first time.
Thaïs looks so big next to her sister. I look closely at her and feel quite worried: I left her barely twenty-four hours ago, and yet she seems to have changed. I notice how badly she shakes. Her head wobbles slightly. When she talks, the words jostle and collide in her mouth. She can’t hold herself upright anymore but hunches her back. She’s quite pale too. The illness is making its stealthy progress. My heart constricts in anguish.
I don’t want to leave her again, ever. I’m afraid of not making the most of being with her, afraid I’ll regret the time spent away from her. This wrenching feeling is truly trying and not something we can gauge adequately. It’s everywhere: I want to spend more time with Gaspard, without neglecting Thaïs; I’d like to have quiet times with Loïc without feeling I’m abandoning my daughter. I need to split myself in two, in three, even in four to live my time with each of them to the fullest. I want everything to be possible. What a wonderful utopia . . . the only safety net to save me from despair is still and always will be to live in the moment. Nothing more. Carpe diem? Not entirely. . . . There’s nothing very carefree about our lives now.
Thaïs is getting frustrated. Her hair keeps falling over her eyes, and she can’t push it back properly. The headband she’s so devoted to must have fallen off somewhere between the car and the sidewalk. Gaspard is starting to climb up the walls in this confined space. Azylis is stirring; she’s hungry. It’s time to say goodbye. With a heavy heart, I kiss Gaspard and Thaïs, wishing them a good trip: Loïc is going to drive to Brittany and back, dropping them off with his parents. It feels like the other side of the world. We will join them in a few days, which feels like an eternity because I know what those days have in store for us: news that will send our lives toppling one of two ways. Definitively. For now I watch Loïc and the children walking away. Thaïs is leaving, and I miss her already.
8
SILENCE. A SILENCE THAT ROARS AND SWELLS AND BURSTS. A deafening silence. Worse than the shrillest scream. A silence as terrifying as the blackest void. It lasts a few brief seconds. A single breath. But a breath that takes everything away with it—all our hopes and all our joy.
The verdict is given: Azylis has the condition too. A window snaps shut on our dreams.
Tell me it’s not true, that we’re not sitting here in the consultant’s office, looking like a pair of broken puppets. Tell me that! No. Sadly, no. The time for tears isn’t over. Not at all, the ordeal is now twice as fierce. And our bodies are so worn, our hearts so tired, our minds so empty. The future, which we had pictured as something comforting and soft as an expanse of cotton, has turned into a field of thistles where everything prickles and tears. An endless field of thistles.
I’m shaking because Loïc is not showing any reaction. He’s sitting on the sofa, staring blankly, his face ashen. Silent and distant.
When we were given the results, he just squeezed my hand a little harder. While my mind nosedived into an abyss of pain, Loïc was like a robot, talking to the doctors about what would happen next. As we left the consultation, he took Azylis’s Moses basket without a word to my sister, who had been waiting in the corridor, and without a glance at his daughter. He didn’t utter a single sound on the way home. A trip that seemed to go on forever.
Now he’s sitting here, right next to me, but he seems so far away. And, for the first time, I’m really frightened. Up till now, we’ve always responded in unison. The way we thought about things was often different, but what we thought was the same. We experienced things together. We made our decisions jointly, although sometimes after a certain amount of discussion, but we have always been united. Loïc and I drew our strength from each other and knew that if we drifted apart, we should fear the worst. Which is why, right now, I wish he would howl and rant and rage. Anything, as long as he would react and say something. Then I’ll stop shaking.
It’s hovering there, gleaming, in the corner of his eye. And when it rolls down his cheek, it’s like a fissure running through the wall that stood between us. A tear. A balm. A salvation. Loïc is snapping. We’re saved. Our tears mingle together. Yes, we’re crying over our future, but we won’t go under, because we’re together. Everything else seems far away now. Loïc’s heart is next to mine. Right next to it.
It’s night. The silence is suffocating, counterbalancing the turmoil inside me. I wake feeling stifled, with an imaginary vise tightening over my heart and head. A powerful painful sound rises up in my throat. A cry: “How? How are we going to cope? How can we get over a cataclysm like this? How can we live with all this suffering?”
Loïc takes me in his arms. He reminds me of an image that our loyal friend Father François used while preparing us for marriage. Loïc recalls his words: “Imagining a whole lifetime together is beyond our abilities. It’s like trying to picture all the food we’re going to consume in our lives. It makes you feel nauseous before you even start. Yes, it’s enough to make you lose your appetite for the rest of your life. But if we settle for eating just what we want or need each day, without thinking about the next day’s meals or the day after that, it feels imaginable. And yet, at the end of our lives, we really will have eaten that great mountain of food.” I manage a smile hearing these words. They ring true. That’s it: A whole life is made up of a succession of days.
The oft-repeated idea—sufficient unto the day is the evil thereof—has new resonance in the light of this reasoning. It offers me a safety valve. In order to survive, I will do things in stages. My view won’t stretch over all the years to come, for fear of losing my mind. It will go only so far as the evening that closes each bustling day—each day with its difficulties but also its joys, however slight. Yes, we will live one day at a time. No more.
“Did you hear what I said? It’s weird: I didn’t ask why but how.”
“Yes, you’re right, it’s strange. I haven’t been wondering that either. But we could very legitimately ask why.”
I think that in our innermost depths we know that this “why” could drive us crazy for the simple reason that there is no answer. We know the medical reasons, the wretched combination of bad genes. That’s a valid explanation, but it’s not an answer. Why this illness and this suffering? And why us? Why two children affected in our trio when the genetics imply a risk of one in four? But genetics don’t let the laws of mathematics get in their way. They take their toll as they see fit. We have subconsciously faced the fact that we have no way of answering this “why,” so we instinctively focus our attention on the next question: How?
From there we can start outlining solutions. And carry on living.
9
A BONE MARROW TRANSPLANT, THAT’S WHAT COULD SAVE Azylis. My ignorance of anatomy means I can’t actually locate this much-discussed bone marrow. I identify it as the spinal cord but soon learn the facts by heart: Bone marrow is where blood cells are made; it produces white blood cells, red blood cells, and platelets. It is found inside bones, hence its name. A transplant involves replacing this marrow with some from a donor. New, healthy marrow that produces properly functioning blood cells. In Azylis’s case, the transplant would mean she could make the enzyme she’s missing, the famous arylsulfatase A, the cause of all our torment.
The professor mentioned this possible treatment during our first meeting last April. He anticipated using it on our then-unborn baby
if the baby proved to have the condition, but not for Thaïs. It was already too late for Thaïs. Experience has shown that, with the infantile form of metachromatic leukodystrophy, there’s no point in a transplant if it’s given after the first symptoms have appeared. On the other hand, the earlier it is given, the better the chances of success. Today a handful of children with the condition have already benefited from bone marrow transplants. It appears to improve their lives, although not one of them is truly cured. But they were all older than Azylis at the time of treatment. Only by a few months, but a few months that could make all the difference. The diagnosis has never been made so soon after birth as it has with Azylis. Which is why there is so much room for hope.
The transplant needs to be made as swiftly as possible. Time is of the essence. The problem is almost mathematical. The transplant produces its full effect in the twelve to eighteen months following the actual treatment, and the first symptoms of infantile metachromatic leukodystrophy appear between the ages of one and two. We need to tackle the illness immediately and preempt it. We’re in a terrible race against time.
There isn’t a day to lose. The transplant doesn’t happen just by clicking your fingers. Before the transplant, the patient’s own bone marrow has to be destroyed using chemotherapy. This lasts, on average, a good week. Long enough to wipe out all the sick person’s cells. Then the new marrow is injected into the patient. So much for the process itself; before we get to that we have to overcome a major barrier: finding bone marrow compatible with Azylis’s.
Looking for a donor takes time, and time is infinitely precious to our daughter. The doctors immediately abandon the idea of a bone marrow transplant proper, thinking instead in terms of transplanting stem cells, which have the same properties as bone marrow cells. For us there are several advantages to stem cells: When a child is born, a sample of these cells is taken, frozen, and inventoried in dedicated tissue banks, so it is easily located and readily available.
Two Small Footprints in Wet Sand Page 3
