Two Small Footprints in Wet Sand

by Anne-Dauphine Julliand

  Ah, Thaïs’s smile! It would make the Mona Lisa pale with jealousy. An inimitable smile, a gentle combination of innocence and maturity, of joy and seriousness. A smile that’s never feigned and comes from so far away, from the depths of her beautiful soul. It sneaks into the sparkle of her eyes, under her long eyelashes and into the subtle movement of her mouth. This isn’t the sort of smile that shows her teeth—Thaïs can’t do that; her features aren’t mobile enough. No, it’s the sort that shows her heart.

  No present has ever felt so precious to us as this lovely painting. Bertrand didn’t settle for just capturing Thaïs’s face in a pretty picture: Beneath the still gleaming varnish, he’s captured forever her personality, her essence, her spirit, her life. And her smile.

  Three and three-quarter years. Today Thaïs is exactly three and three-quarter years old. She’s so young: so young we’re still counting the quarters. For her, this year that’s passed so densely and intensely should count as double. She’s so nearly four she can almost touch it. Just three more months. Or rather, a whole three months to go! Will she have the strength to get there? Her birthday feels like a mirage in the desert that gets further away the closer we get to it. The days separating us from that date are going by too slowly. But I’m hanging on because I want to celebrate this birthday with her. This one more than any other: It’s a leap year, with a precious February 29. On that day she will unquestionably be four years old.

  Thaïs has had only one normal birthday in her life: her first. We celebrated it in a happy carefree way. We didn’t know. . . . The day she turned two will always be engraved on our hearts as one of the darkest of our lives. When she was three, we made use of the situation. When someone’s born on February 29, you can decide whether you celebrate their birthday on February 28 or March 1; it seemed logical to us always to celebrate it the day after February 28. Anyway, the year she was three, we bent the rule: we celebrated it on February 28 and March 1. Two happy days instead of one. One way of finding some consolation. Seeing as she won’t live for long, we doubled up her birthday, without aging her any more quickly.

  Everything’s different this year: The calendar has a February 29. I’m clinging to that day, praying Thaïs will still be with us then.

  Several bereaved mothers have told me that their children’s birthdays are more difficult to cope with than the anniversaries of their deaths. I feel the same. Every year, memories of that day come back to me, intact. I remember the sweet elation, the boundless emotion, the promise of life hugged close to me. All the plans, the hopes, the future with that tiny newborn.

  I have painfully lucid memories of the enormous happiness I felt when Thaïs came into the world. When I found out she was a girl, I could have burst with joy. A girl, a princess . . . I’d been longing for one. While the midwife checked her over, I smiled beatifically as I pictured everything I would do with her. I saw her as a five-year-old twirling in pretty dresses, as a fifteen-year-old going to great lengths to look gorgeous, as a twenty-year-old, already a woman. I liked everything I saw. I anticipated our mother-daughter complicity. And I felt strong. Thaïs was giving me a sense of balance, of trust in life. Perhaps that trust was a little naïve, but it was so sincere. I thought that now, whatever happened, I had a daughter. Whatever happened . . .

  For a long time, I regretted that Thaïs was born on February 29. Now, I’m convinced it’s better that way. I tell myself I’ll have to relive the day she was born only once every four years. The other years I’ll take refuge in vagaries of the calendar. I’ll sidle off between February 28 and March 1, to cry, where no one can see me.

  The results have merely confirmed what we already knew. Azylis is going downhill. In two months her walking hasn’t improved, she’s never let go of her father’s finger. Every valiant attempt to launch out on her own ended in a fall. This lack of progress in itself was a bad sign. Until I saw it very clearly: Her feet now turn outwards. Not entirely in the same way as Thaïs’s, but they turn all the same. And they slow her down. And her hands shake. Not all the time, only sometimes, when she brings a spoon to her mouth or reaches out her hand. The evidence is staring me in the face: The illness is developing in Azylis.

  The truth feels even more brutal when I read it in her medical report. This month’s tests disguise nothing: Her nerve conductivity is slowing in the peripheral nervous system, and her motor faculties are deteriorating. These developments aren’t under control. Yes, that’s right, Azylis is falling back. And I’m falling apart.

  I’ve lost my strength, my voice, the light in my eyes. This situation is a cruel reenactment of eighteen months ago, when we heard the name metachromatic leukodystrophy for the first time.

  The doctor isn’t ready to admit defeat. In his view, the news is bad of course, but there’s nothing catastrophic about it. Deterioration of the peripheral nervous system was predictable because the illness was developing all through the year that it took for the transplant to have effect. It was a close-run race, perhaps an unwinnable one. But these aren’t the only results. Others are more encouraging. He begs me to focus on the positive things: Azylis’s MRI scan is still perfect; there are no detectable alterations in her brain, and all the psychomotor tests are normal. That certainly wouldn’t have been the case without the transplant. It’s had a beneficial effect on Azylis, that’s for sure. All hope is not lost: The changes in her motor functions could stabilize at a later date.

  It’s all the same to me because I don’t believe in it anymore. Azylis will never get better, at least not completely. In a few weeks, a few months at the outside, she’ll lose the ability to walk, then to stand, then to sit, then to speak, then everything else, since no one can stop this godforsaken illness.

  I don’t feel rebellious or angry. Just terribly weak, hugely discouraged, and profoundly weary. And, of course, I can still hear them, those words, still the same ones, the ever present “if you knew.” But that’s just it: I don’t know. And I’m tired of all this uncertainty.

  Whatever the night is like, the sun comes up. It will take time for me to climb back up the hill and find renewed hope, but I’ll get there. With Loïc. One step at a time.

  When we read the results of those tests yesterday, we weren’t hearing for the first time that Azylis was ill; we’ve known that since her birth. Since then we’ve battled on and never backed down. And, tiny and fragile as she was, she fought hard too. Without giving up. A struggle she’s undertaken in her own way, with no other weapons than her love of life, her boundless energy, her sunny nature . . . and her trust. She too can tell that her situation is getting more complicated. She’s well aware that her body no longer obeys her in quite the same way, but she’s still not faltering. This morning, like yesterday, she picked up her weapons and set out once more to conquer life, taking us along with her.

  Darling little Azylis, I have no idea what your life will be like. I don’t know whether you’ll go down the same road as Thaïs, or join Gaspard on his, or whether you’ll map one out just for you. But we’ll be on that road with you, every day. And if you can’t walk, we’ll carry you to make sure you get further along the way.

  Darling little Azylis, we believe in you, we have faith in you. We won’t abandon you. Not today or ever. In this war we’re waging but over which we have no control, the greatest support we can offer you is our love. Our unconditional love.

  Yes, my darling little Azylis, it’s you that I love, not your abilities and aptitudes. It’s you, for who you are. Not for what you do.

  For your whole life, my darling little Azylis.

  41

  ONE NIGHT. IF THERE HAD TO BE JUST ONE NIGHT, IT WOULD be this one—this cold, dark December night. It starts like every other, with my trying to find elusive sleep, struggling with turbulent dreams. And yet this night was to change my life. Forever.

  Three o’clock in the morning. A time when all certainties waver, snared in the suddenly hostile depths of a darkness grown too black. The previous day seems far aw
ay. The next dawn is still hesitating to break. I’m not asleep, despite my heavy eyelids. My mind goes over and over things; my heart rate quickens. I have to go to her. As I do on so many nights.

  I get up softly and walk through the sleeping apartment, annoyed with the old wooden floor for creaking underfoot. I don’t want to wake anyone, don’t want any witnesses to my nocturnal escapade. I go into Thaïs’s bedroom but don’t turn on the light; I don’t need it. The machines purr to a soothing rhythm. Her oxygen level appears as a luminous red dot. Thaïs is lying on her bed, motionless as usual, her head turned toward the door and her eyes closed. She’s sleeping peacefully. I draw up a chair to sit beside her, and take her warm chubby hand. Shrouded in silence, I gaze at her. Not moving or talking, I just stay there, and the night draws itself out gently.

  As they grow used to the dark, my eyes make out the room: the machines and sensors, the cuddly toys and dolls, the embroidered sheet, the children’s drawings pinned to the wall. I’m filled with emotion as I look around Thaïs’s world. When my eyes come to rest on her, they meet hers. I thought she was asleep, but her eyes are staring up at me, wide open. Their sudden intensity is uncomfortable. Thaïs can’t see now, and all at once this blind stare of hers cuts right through me, delving its way right to my heart.

  It takes courage on my part to hold her gaze—and surrender to it. Time stands still. I can’t even be sure my heart’s still beating. Nothing exists now except for those ebony eyes. There in the depths of a winter’s night—my attention pinned on my daughter’s eyes, her hand held tightly in mine—our hearts and minds and souls are in communion, and I understand. At last.

  It feels like a blinding explosion. Without moving or speaking, Thaïs reveals a secret, the most beautiful and longed for secret: Love. With a capital letter.

  One day, in a hospital consulting room, I promised my sick little girl that I would pass on to her everything I knew about this emotion that makes the world go round. I’ve made a point of doing that for eighteen months. And all that time, too absorbed by the sheer scale of the task, I didn’t see, I didn’t grasp that she was the one teaching me about love. In all those months spent by her side, I didn’t realize because actually, when I come to think of it, I don’t know much about love, real love.

  How does she know? How is it possible? Thaïs has been deprived of everything. She can’t move, can’t talk, can’t hear, can’t sing, can’t laugh, and can’t see. She can’t even cry. But she loves. That’s all she does, with all her strength. Through her wounds and infirmities and failings.

  Thaïs’s love doesn’t impose itself, it exposes itself, reveals itself. She appears to us as she is, fragile and vulnerable, with no shell or armor or shields. With no fear. Of course someone looking from a distance can scoff at, scorn, or spurn this fragile state. But all who come nearer, who lean in close and try to follow her journey, they like me will see that this vulnerability elicits only one response: love.

  Almost two years ago, hearing the extent of the damage this illness would cause, I asked myself something, “What will she have left?” Love. She will be left with love. The love we receive. And the love we give too.

  Yes, love has the unique ability to reverse the current, to change weakness into strength. Deprived of her senses and physically dependent, Thaïs can’t really do anything without outside assistance. She could ask a lot, and yet all she expects from us is what we willingly give her. Nothing more.

  We generally think that a painful, diminished life is hard to accept, and that’s probably true if you don’t have love. What’s unbearable is the absence of love. When you love and are loved in return, you can cope with everything. Even pain. Even suffering. Suffering . . . we know so much about it, this unwelcome companion to our lives, and we’ve experienced it in all its guises. All except one perhaps: the one that nudges people toward despair, that annihilates the best of feelings. Yes, I realize tonight that I’ve never suffered because of Thaïs. Never. I’ve suffered with her a great deal, far too much, all the time. But always together.

  This evening I’ll venture to say it: Thaïs’s life is a treasure, a concentrate of love that she generously diffuses around her. How many people have come to visit her, out of solidarity or compassion or affection, it doesn’t really matter why, and then left bowled over, turned upside down. But not bowled over in the sense of confronting a brutal shock, not destroyed, not traumatized. No, bowled over because they saw something else, beyond the pain and physical weakness. They glimpsed a far more contagious illness. . . .

  I remember one of the night nurses in Marseille. I didn’t hear her come into Thaïs’s room, and she stayed there a while, busying around my daughter, but didn’t go straight back out afterwards. She sat down on the end of my bed and confided in a husky voice: “What’s going on here? There’s something special in this room. I don’t know what it is, but it’s unique. You’re up against the worst, and yet you feel good. There’s such a sense of gentleness, happiness even. Sorry if what I’m saying upsets you, but I can’t keep it to myself.” At the time I didn’t grasp what she meant. Now, it’s all become clear.

  Without looking away from her penetrating stare, I move closer still to Thaïs, until my face brushes against hers, and gazing into her eyes, I whisper: “Thank you, Thaïs. For everything. For who you are. Everything you are. And for everything you give. You make us so happy. Really happy. I love you, my princess.”

  Deep in the heart of me, the voice fades away and leaves me alone. My mind has stopped ringing with that never ending “If you knew . . .” My heart explodes with a cry, “I know!”

  42

  A SIGH. JUST ONE. LONG AND DEEP. IT REVERBERATES powerfully through the silence of this night before Christmas.

  Leaning close in beside our daughter, Loïc and I hold our breath to gather in hers. The last. Thaïs has just died.

  Good-bye now, my little Thaïs.

  ACKNOWLEDGEMENTS

  To my parents and parents-in-law, thank you for the time, energy, and love that you’ve given us without counting the cost.

  To Thérèse, thank you for your joyfulness, your soothing presence, your reassuring reliability, and all the wonderful things you brought to our family.

  To the frontline troops: Zabeth, Caro, Solène, Béné, Louis-Étienne, Malex, Marie-Pascale, Arlette, and Anne-Marie; to the invincible: Constance, Antoine, Sophie, Damien, Nico, and Bertrand; thank you for never giving up.

  To the members of the in-home care team: Delphine, Bénédicte, Laure, Delphine, and Édith G.; to the palliative care nurses: Odile and Chantal; to the doctors, Patrick A. and Caroline S. along with their team, particularly Christine, Florence, Adèle, and Marie-Claude B., an astute psychologist; to the physical therapist Jérôme G.; to the UPIX team; thank you for your skill, for being there with us and having faith in us.

  To EAL, thank you for helping us climb our mountains.

  To Chantal, Laurence, and their family, thank you for your generosity and for such a warm welcome.

  To my sisters, Marie-Edmée and Amicie, thank you for being there, in the bad times but also in the good.

  To Father François, thank you for showing us—so often—that we shouldn’t lose sight of what really matters.

  To Christian, thank you for pushing me to go that step further.

  Lastly, to Loïc, thank you—for everything.

  And thank you to all those who have supported us by being there and keeping us in their thoughts or prayers. And still do.

 

 

 
div>