Two Small Footprints in Wet Sand: The Uplifting True Story of a Mother's Brave Quest to Save Her Daughter
208
Two Small Footprints in Wet Sand: The Uplifting True Story of a Mother's Brave Quest to Save Her Daughter
208eBook
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Overview
A true tale told by a mother, it’s the story of a little girl, of family, friends, and the medical community united to define life by its beauty rather than its length. On the day Thaïs turns two, her mother, the author Anne-Dauphine Julliand, learns that her child has an untreatable genetic disease, the rarest of the rare, a silent disorder that will slowly paralyze her daughter’s nervous system and kill her. Metachromatic leukodystrophy—MLD—is the diagnosis. There is no cure.
While the disease may be grim, neither this book nor the people in it are. Grace, dignity, and most of all love mark the lives of all those involved in the care of Thaïs. Julliand does not play down the pain of her child or of her family, or the exhaustion, discouragement, or burden each of them carries. She promises her daughter a full life—not a life like other children have—but a happy life, a life of love. Thaïs’s family and the medical staff around her fight to provide comfort and efficient care, to conserve her dignity, to give her love, to “add life to days when we cannot add days to life.”
Skyhorse Publishing, along with our Arcade, Good Books, Sports Publishing, and Yucca imprints, is proud to publish a broad range of biographies, autobiographies, and memoirs. Our list includes biographies on well-known historical figures like Benjamin Franklin, Nelson Mandela, and Alexander Graham Bell, as well as villains from history, such as Heinrich Himmler, John Wayne Gacy, and O. J. Simpson. We have also published survivor stories of World War II, memoirs about overcoming adversity, first-hand tales of adventure, and much more. While not every title we publish becomes a New York Times bestseller or a national bestseller, we are committed to books on subjects that are sometimes overlooked and to authors whose work might not otherwise find a home.
Product Details
| ISBN-13: | 9781628724837 |
|---|---|
| Publisher: | Arcade |
| Publication date: | 02/10/2015 |
| Sold by: | SIMON & SCHUSTER |
| Format: | eBook |
| Pages: | 208 |
| File size: | 1 MB |
About the Author
Adriana Hunter is the translator of works by Catherine Millet, Genevieve Jurgensen, Amelie Nothomb, Viviane Moore, and Louis Sanders.
Read an Excerpt
Two Small Footprints in Wet Sand
The Uplifting True Story of a Mother's Brave Quest to Save her Daughter
By Anne-Dauphine Julliand, Adriana Hunter
Skyhorse Publishing
Copyright © 2011 Éditions Les Arènes ParisAll rights reserved.
ISBN: 978-1-62872-483-7
CHAPTER 1
That's when I feel the words resonate in me. They reach my heart and mind, infiltrating all of me: "If you knew ..."
Wednesday, March 1. An ordinary day, the end of a long, slow Paris winter. The waiting room, where we've been for twenty minutes already, is shoehorned between doorways to the neurology department at a children's hospital. We can see everyone going past from there. Every time a door opens, I stop breathing. I keep hoping — but also dreading — that I'll see the neurologist's face appear, and I'll know, at last. Since her call yesterday, time seems to be going on forever.
"We know what your daughter is suffering from. Come at three o'clock tomorrow, so we can explain it to you. Come with your husband, of course."
Since then we've been waiting.
Loïc is here, right next to me, pale, strained. He stands up, walks away, comes back, sits down, picks up a newspaper, puts it down again. He takes my hand and squeezes it with all his strength. My other hand strokes my rounded stomach — a gesture that's meant to be soothing for the little life that has been growing inside me for the last five months. An instinctive, protective gesture.
That's when I hear it. "If you knew ..." The phrase imprints itself deep in the heart of me. I'll never forget it. And I'll certainly never forget the way it made me feel: It was loaded with the suffering and confident calm of someone who knows — someone who knows everything. It single-handedly summarized the ordeal that would begin to shape our day-to-day lives in a few minutes' time.
The doctor arrives at last. She says hello, apologizes for being late and takes us into a small, isolated room at the end of a corridor. Two people follow us, one of them a specialist in metabolic disorders whom we have already met.
When we are introduced to the third person, my heart constricts: She's a psychologist. And then, with no warning, I'm overwhelmed by tears before I even know. Because all at once I've got it. "If you knew ..."
There isn't any thunder, and yet everything's roaring. The sentences reach me pared down to the essential points. "Your little girl ... rare genetic disorder ... metachromatic leukodystrophy ... degenerative effect ... very limited life expectancy ..."
No.
My brain refuses to understand, my mind rebels. They're not talking about my Thaïs. It's not true. I'm not here. It's not possible. I huddle against Loïc, my rampart.
While everything is scrambled inside my head, my mouth timidly formulates the words, "And for the baby we're expecting?"
"There's a one in four chance the baby will also be affected. A twenty-five percent chance ..."
The lightning bolt strikes. A terrifying black hole opens up under our feet. The future is reduced to nothing. Even so, in that terrible moment, our instinct for survival takes over for a few short but decisive seconds. No, we don't want an antenatal diagnosis. We want this baby. It represents life! A tiny glimmer of light on our grim black horizon.
The conversation continues, but without us. We no longer have the strength. We're somewhere else, nowhere. Now we have to get up and leave the room. It may not seem much, and yet it's one of the most difficult things to do. Because that move hurls us back into the present, into our lives where nothing will ever be the same again. It's symbolic: We have to pick ourselves up after the impact and carry on with our lives. A first step. A small step, but a step all the same.
We say good-bye outside the hospital, distraught, broken, shattered. Loïc is going back to work. Nothing had led us to anticipate a cataclysm like this.
I go home on autopilot. She's there, I've hardly stepped through the door before I see her, Thaïs. ... She's standing in the hallway with her great big smile, her pink cheeks, her cheeky expression, and her blond hair. There she is, happy, glowing, mischievous, confident. And today, Wednesday, March 1, is her birthday. She's two years old.
Thaïs is like any other little girl. Or at least she was until an hour ago. Until today the only distinctive thing about her was her birth date: February 29. A day that comes around just once every four years. With birthdays only in leap years. Loïc loves the fact. He announces happily that his daughter won't get old so quickly. There it is, her one peculiarity. That and a distinctive way of walking that's adorable but slightly hesitant. I noticed it at the end of the summer. I like looking at baby footprints in wet sand, and there, on a warm beach in Brittany, I realized that Thaïs walked in an unusual way. Her big toes turn outwards. She can walk, though, that's what matters. She might have some vague problem with flat feet, at the very most.
To set our minds at rest, we went to see an orthopedist in the fall. He didn't find anything wrong and advised us to wait a year to see whether things would straighten out by themselves. But a year is a long time for parents. And two opinions are better than one. We made an appointment at a children's hospital. They came to the exact same conclusion.
"There isn't any problem, at least not an orthopedic one," the doctor said. "But you should arrange to see a neurologist all the same. He might have an explanation."
We weren't worried; we knew there wasn't anything seriously wrong with Thaïs. It was clear to see.
October was drawing to a close. Our lives were brimming with insolent happiness. After Gaspard, who would soon be four, and Thaïs, we were expecting a third child in mid-July. By then, we would have moved into a bigger apartment. We were both fulfilled by our work, and we love each other. In other words, life was smiling on us ... if it hadn't been for Thaïs's little foot which insisted on turning outwards as she walked....
The neurologist couldn't see us before the end of the year. We were in no hurry, even though the caregiver and the principal at Thaïs's day care center think they've noticed tiny shaking movements in her hands. ... and thought she didn't smile so much anymore. That was true, but we didn't find it alarming. Thaïs must have been aware of the still-invisible baby, she was feeling put out and unsettled by it. That must be the explanation. But it didn't stop her developing like every other little girl her age, singing, laughing, talking, playing, and marveling at the world.
When we met the neurologist, she confirmed all these facts, but went on to prescribe a series of tests. At the start of the new year, the MRI scan proved perfectly normal. Good news? No, not really, the doctors thought, because they still had to explain that gait problem. The diagnosis was looking gloomier. Thaïs underwent more tests, slightly more painful ones: blood samples, lumbar puncture, skin biopsy. We heard talk of metabolic disorders without really knowing what that meant and without any precise answers. For now.
Then Loïc and I were called in for blood tests. We went along meekly and confidently, light years away from suspecting what lay in store.
And yet, in a few days' time, our lives would be turned upside down.
CHAPTER 2"Metachromatic leukodystrophy ..." What a barbaric name! Unpronounceable and unacceptable. Just like the illness it defines. Words that don't belong with my princess. There she is standing in the hallway, clapping and asking for her cake with its candles. My heart bursts. It's an unbearable sight. My daughter, who's so full of life, can't die. Not so soon. Not now. I hold in my tears for a few moments, long enough to give her a hug and settle her in front of her favorite cartoon. I close the door. She smiles at me.
My mom is waiting for me in the living room. I break down completely.
"It's worse than anything we imagined. Thaïs has something really serious. She's going to die. She's going to die."
Mom's crying. And she never cries.
I can't tell her more than that because I don't remember anything else. Before we left the hospital, the doctor, with some foresight, slipped into my hand a piece of paper with the name of the condition, "meta-chro-ma-tic leu-ko-dys-tro-phy." I separate out the syllables in an attempt to give them some sort of shape. To make the reality more concrete.
I have to start again three times before I can type the name into a search engine without any mistakes. I hit Enter. But I back down when it comes to clicking the links on the screen. I'm too frightened of finding the horror hiding behind them.
A message tells me I have an email. It's from Loïc. He's been braver than me. He's looked through sites on the condition and is sending me a toned down summary. Oh, I do love him! It is through his words that I assimilate what metachromatic leukodystrophy is. A nightmare. A combination of bad genes from Loïc and me. We are both healthy carriers of a genetic anomaly. And we both transmitted the defective gene to Thaïs. Her cells can't produce a specific enzyme, arylsulfatase A, which is responsible for processing a group of lipids, the sulfatides. Without this enzyme, these lipids accumulate in the cells and progressively destroy the myelin sheath, which surrounds nerve fibers and facilitates the transmission of nerve impulses. The condition is silent at first and then appears out of the blue. From that point on, it gradually paralyses the entire nervous system, starting with motor functions, speech, eyesight ... until it affects a vital function. The patient dies two to five years after the first effects are felt. There is currently no known treatment. Thaïs has the children's form of the condition, the most serious. She has no hope of recovery.
No hope. I can't breathe. "Two to five years after the illness started." But when did it start? Today? Last summer on the beach? Earlier still? When? I picture a huge egg timer with the sand streaming through it at top speed.
I reread the email, blinded by tears. I dissect each stage of the illness, right through to the end. I read that soon my baby, who's only just two, won't be able to walk, talk, see, hear, move, or understand. What will she have left then? "If you knew ..."
The phone never stops ringing. Daddy, my sisters, my in-laws, a few friends. I announce this cataclysm to each of them, repeating what I've managed to take on board. Each time, there's a cry of anguish, disbelief, and pain.
The bell rings in the neighboring school. Mom sets off courageously to pick up Gaspard. Thaïs's cartoon is coming to an end. A key turns in the lock; Loïc is home. In a few minutes, we'll all be together as we were at breakfast this morning. Like a normal family. Except ...
We will have to share this news with the children. Gaspard comes in at full pelt, as usual. He describes in detail his hoop-rolling race in the schoolyard and, between two mouthfuls of his snack, announces triumphantly that he won again. What a contrast! For Loïc and me time has been left suspended since this afternoon, but life carries on at a hundred miles an hour for our little man.
I hug Gaspard, pulling him close to me. Loïc sits Thaïs on his knees. He speaks first and finds the right words:
"Today we found out why Thaïs walks the way she does. She has an illness that makes it difficult for her to move around. And to do other things too."
"I've know for a long time," Gaspard interrupts him. "I've known since I was little that Thaïs was ill. And I also know she'll soon be old."
We sit there speechless. To Gaspard, being old means dying. He's only ever seen old people "go." How can he understand?
"Is it my fault? Or daddy's? Or mommy's? And what about me, am I sick too? And you? And the little baby?"
He asks all these questions as if he had them ready beforehand.
Thaïs smiles a dazzling smile. She slips off Loïc's knee, takes three steps, falls over, and picks herself up, laughing. As if she were saying: "Now you know too. You get it." She already knows. She already knows so much more than we do.
We wish we never had to wake up, staying asleep forever, to avoid confronting the truth. How tempting! I envy Sleeping Beauty. ... It's been a difficult night, broken, tortured. Wide-eyed but grimly dark. The few short hours of sleep did allow me to forget, though. A bit. For a while. The previous day's images hammer inside my head: the doctors, their announcement, the emptiness. The nightmare becomes reality once more.
In the midst of the chaos in my mind, one glimmer of happiness — a sweet respite — magically hovering over the storm: Thaïs beaming as she blew out her two candles and giggling as she opened her presents. Gaspard singing "Happy Birthday" to his little sister at the top of his lungs. A standard family scene. But on that particular day, this moment of grace opened a window and let in the light.
Gaspard and Thaïs quickly went back to normal after we announced the bad news. Once over the initial emotion, they could think of only one thing: celebrating Thaïs's second birthday. Children have that ability to bounce back after tears. Because they don't project themselves into the future, they live fully in the present.
Gaspard and Thaïs's attitude reminds me of a lovely anecdote about people who are asked what they would do if they were told this was their last day. All the adults come up with great schemes, plan gargantuan meals, try to realize as many dreams as possible as quickly as they can. A little boy setting up his electric train set is asked the same question.
"If you knew you were going to die this evening, what sort of special thing would you do today?"
"Nothing, I'd carry on playing."
So, on this painful morning, when I'm not fully awake, still snuggled under my comforter, already succumbing to tears, I glimpse the solution: I will try to live in the present, informed by the past but never taking refuge in it, colored by the future but not projecting myself into it. In other words, do what children do. It's not just a rule to live by, it's a question of survival.
Loïc stretches beside me, then his features sag and his eyes redden. The reality has come back to him too. Brutally. I tell him what I've been thinking; he nods in silence and holds me in his arms as if sealing a pact. We will be united in this ordeal. It's our life. And we're going to live it.
CHAPTER 3A week already. One hundred sixty-eight hours. TEN thousand eighty minutes. And as many minor victories. The battle begins again every morning when I wake and the thought needles through me: Thaïs is sick. And every day I cling to the simple actions of day-to-day life as if to a lifebelt. To stop myself going under. Wake Gaspard and Thaïs, without crying; give them breakfast and force myself to eat something; take Thaïs to her nanny and leave her there, without crying. Go to work. And actually work.
Every morning I'm tempted to abandon everything. Spend the whole day with Thaïs, clutching her close, covering her in kisses, and telling her I love her. What a wonderful schedule! But it isn't a life. It's a dream I'm keeping for later. For "up there." No, here, I have to carry on. For Loïc, for Gaspard, for our unborn baby. And for Thaïs, of course.
She's still the same little girl, engaging, unruly, cheerful, mischievous. And willful, very willful. So much the better. She'll be needing plenty of strength of character and fighting spirit to tackle the illness. She's not lacking in either at the moment. She never falls without picking herself up. She's not done amazing us yet.
In the space of a few days, we notice clear signs of her illness. Her hands shake. They already shook a little before, but we had chosen to ignore that. Now she has trouble putting the lid back on a felt-tip or bringing her spoon to her mouth. I want to help her. I even anticipate her every difficulty by doing things for her. She's infuriated. "No, Thaïs do it!" She wants to do everything, all on her own. I give in. On that and other things. I agree to all her wishes, comply with her every whim. I want her to get the most out of her life, with no constraints. I want her to be thoroughly happy. But the exact opposite is happening. I feel helpless. I don't know what to do to satisfy her now.
"Don't change anything," Loïc advises. "She can't understand why yesterday you would scold her if she did something wrong but today, without any explanation, you let her do it. She must think we've lost interest in what she does. Telling her about the illness hasn't actually changed anything for her, you know. In her little two- year-old's head there's no before and after March 1; life goes on like before. So we have to behave the same. We won't give up on her upbringing; we'll adapt it to the situation. It's important to keep a framework for her to be balanced and fulfilled. Thaïs is lost without the parameters we set."
(Continues...)
Excerpted from Two Small Footprints in Wet Sand by Anne-Dauphine Julliand, Adriana Hunter. Copyright © 2011 Éditions Les Arènes Paris. Excerpted by permission of Skyhorse Publishing.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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