Two Small Footprints in Wet Sand

by Anne-Dauphine Julliand

  Loïc turns toward me and gives me a wave. Seeing my ravaged expression, he comes over. He knows what I’m going through; he’s feeling it too. “Be brave. We’ve made the right decision. We can’t all stay in the apartment all summer, going around in circles. We need to make family plans and see them through. I’m sure that’s what Thaïs wants for us. And for her. She wants us to stay properly alive. So let’s make the most of this vacation. Let’s live it to the full, with no regrets or remorse.”

  Someone once said life was a succession of separations—from birth right through to death. Some of the separations are physical, others psychological. Some temporary, others definitive. Some insignificant, others radical. Some gentle, others violent. Some a distancing, others an emancipation. Some a tearing away, some a tearing apart.

  Learning to cope with life invariably involves mastering our autonomy. Who finds it more difficult to accept, children or their parents? It’s agony being away from Thaïs, even for a short time. I’ve succeeded in releasing my hold a little by switching off the baby monitor one night and then the next. It’s still painful. So flying across part of the Mediterranean without my princess is beyond my abilities as a mother.

  How wonderful, I mean how wonderful to have come here! Sardinia soon dries my tears. You don’t cry in paradise. This bewitching place is a complete change of scenery. The house is stunning, cool and white, nestled amid flowering vegetation, with views over a sea so blue it rivals the immaculate sky. Everything here is an invitation to a dolce vita.

  The atmosphere is warm and relaxed. Gaspard has been reunited with his great friend Max, and they don’t lose sight of each other for a moment. Azylis is reveling in the joys of a social life, playing the role of the princess before a court of children at her beck and call. She’s never short of volunteers to pick her up, play with her, and feed her. In a word, she’s in heaven. And we can really, truly catch our breath. These friends are worth their weight in gold, she is, he is, and their exuberant tribe. They spoil us and pamper us, surrounding us with treats and kindness.

  This vacation is a blessing. I have to admit our batteries were nearly on empty. We wouldn’t have held out long without this salutary interlude. We were starting to run out of energy, torpedoed by the lack of sleep and the constant tension. Here, freed of the constraints of daily logistics, we’re recharging our batteries. And we’re really sleeping, deep restorative sleep. With no jolting awake, no untimely disturbances, and no nightly fears. We arrived exhausted and stressed, about to touch bottom. At the end of this Italian week, we head home relaxed, rested, lighthearted, and tanned.

  The news from Paris is good. The relay is holding out and the sentries taking over from each other without a hitch. Thaïs is doing well; she’s being mollycoddled, spoiled, and fussed over by her guardian angels. Parents, sisters, cousins, they’ve taken it in turns to spend two days with Thaïs, two days to enjoy her. They clearly wouldn’t exchange this time for anything in the world, and Thaïs herself is appreciative and doing well. In fact, it’s amazing: There wasn’t a hint of concern in the whole seven days we were away, which never happens in normal circumstances.

  Yes, it really was a good idea to dare to go away, an idea that leads to others: We’re now planning a possible week in Brittany toward the end of August. It’s a good sign if we’re starting to make plans, even small ones. We’re freeing ourselves from our vision of life lived from one day to the next, and venturing a little further into the future. It does us so much good.

  And so does coming home to Thaïs.

  35

  PLENTY HAS HAPPENED WHILE WE’VE BEEN AWAY . . . THE nurses and our parents have hatched a real revolution.

  We quickly get wind of the fact that something’s going on. The day after we come home, the nurse starts asking us about our trip to Sardinia, about the benefits of having a change of scenery, and whether we’d like to do it again. My mom’s smile speaks volumes.

  They have it all planned. The only thing missing is our agreement. If we like, the in-home care team have arranged with my parents for us to spend the whole of August in my parents’ house to the south of Châteauroux. And when I say us, I mean all five of us. This time Thaïs will be coming too. What a wonderful surprise! Unhoped for. Never in our wildest dreams would we have pictured going away with Thaïs. Sometimes reality outstrips dreams. . . . Thank goodness!

  “Don’t you worry about anything,” the nurse reassures us. “Everything’s ready. All the arrangements have been made: The equipment rental company has already been told, the family doctor has agreed to take responsibility for monitoring her care, and there’s a palliative care team ready to take over from us.”

  Our departure is scheduled for August 1. All we have to do is pack our bags and count the days. But a grain of sand slips into the cogs of this plan, threatening to compromise the whole thing. The Medicaid system has refused to cover Thaïs’s transport by ambulance from our apartment to my parents’ house; they see this as a nonessential trip. Their understanding of the situation is open to discussion, but this isn’t the place. So what can we do? We have to move Thaïs by ambulance; no other means of transport would be conceivable. When the ambulance company tells us how much the trip would cost, we start despairing: The number has four figures in a row with no decimal point. There’s nothing surprising about that; it covers the mileage cost, fees for a driver and a nurse, the medical equipment, etc. Our family budget can’t take on this sort of expense. Yet can we let a financing problem threaten our wonderful plan? We have to find a way to put together the money. A solution comes to save us at the last minute, a solution hiding behind three generous letters: EAL.

  EAL, the European Association against Leukodystrophies, a source of comfort and solace in our lives. The EAL offers support to families like us affected by myelin-related illnesses. Put another way, the association specializes in high-altitude expeditions: It helps us climb our daily Everests.

  We first contacted them very soon after Thaïs’s illness was diagnosed. It was a tentative first contact; we simply wanted to establish a connection and make ourselves known to them but didn’t dare open the door wide. It was a difficult step for us to take; we didn’t want to come face to face with other affected people, other suffering parents. We were afraid of what they might reveal and that the appalling reality of the illness would smack us full in the face. We thought we should spare ourselves that but quickly realized we should share experiences. Who better than other parents in the same position to understand our ordeal?

  Amongst ourselves, the families in the EAL, there’s a combination of propriety, respect, shared experience, and sincerity. Amongst ourselves we have no room for euphemism, we use the real words with no fear of shocking each other or being misunderstood. Amongst ourselves we’re free to laugh, make jokes, and cry. Amongst ourselves there’s never an awkward look or an inappropriate question. Amongst ourselves compassion assumes its full meaning and solidarity its full force. Amongst ourselves we make up one big family. A battered, amputated family, but a close-knit, united one. A wonderful family.

  The EAL doesn’t stop at forging links between families; in addition to moral support, it offers practical help. Finding that someone has an illness like leukodystrophy generates a multitude of often complicated and always tedious administrative processes. The EAL is on hand for this sort of thing too; its employees and volunteers are familiar with the administrative labyrinth; they anticipate requests, fill in forms, and steer applications. The association is also aware of the financial difficulties families may face, and it doesn’t settle for easing their daily life but aims to improve it—by helping a family go away for a vacation with their little girl, for example. Their last vacation together.

  Ten past eight. They’re on time, a little early even. A good thing too because we’ve worn down our reserves waiting. We’ve been ready since dawn, excited and stressed by the day’s big event: Today we’re all going on vacation.

  We open the door to
two familiar faces: This ambulance team has already taken Thaïs and Azylis to the hospital several times. I recognize the driver who took Thaïs in an emergency when she was in terrible pain. And that’s reassuring. I’m convinced they’ll take the greatest care of my pretty princess.

  It’s a tricky moment: We need to transfer Thaïs into the ambulance, but she can’t bear being moved; every movement is torture. The ambulance men have anticipated this problem and brought a mold which can be emptied of air to adopt the exact outline of Thaïs’s body and hold her firm. Loïc watches the maneuver anxiously, compulsively repeating the words, “Gently, be careful with her, gently.” Thaïs flinches and grimaces, only relaxing once she’s secured in the mold. Every move the ambulance men make is controlled, and they walk very slowly out to the vehicle. Equally carefully, they lay Thaïs down onto a specially adapted stretcher. It looks like the hardest part is over. We can go.

  I climb into the front, next to the driver, while his colleague takes up his position beside Thaïs, connects up the machines, and monitors her vital signs. Loïc leads the way with Gaspard and Azylis in a car filled to the gunwales. I can’t wait for this journey to end and for today to be over. In the back, Thaïs is moaning a muted complaint. Her eyes are wide open, swiveling in every direction. She’s distressed to be leaving her room and the world she knows. Attentive as a chivalrous knight, the ambulance man holds her hand, gently strokes her hair, and hums her a lullaby. Thaïs eventually falls asleep.

  The miles go by, and the journey carries on calmly; we’re getting close to our destination, and I let myself snooze. When the ambulance slams to a halt with a screech of brakes, the driver curses. Two cars ahead of us, a vehicle has left the road, somersaulting several times and crashing to a standstill on the shoulder. Our driver parks up immediately, and his colleague leaps out of the ambulance. In a few quick strides, he’s at the scene of the accident and appraising the situation: The woman at the wheel is in a very bad way. He calls to the driver to bring him the oxygen bottles brought for Thaïs. Keeping his cool, the driver picks up the bottles and an emergency aid bag and runs out to join him.

  I move into the back to sit next to Thaïs. She’s woken up and doesn’t seem to know where she is; I can see the panic in her eyes. I’m terrified too, focusing on her dilated pupils to avoid looking outside. Several painfully long minutes trickle by. I hear the emergency services arrive, lights flashing and sirens blaring. One of our ambulance men goes to meet the emergency team. He describes the situation in precise professional terms and quickly lists the care he’s administered. Crucial care: a tourniquet on the woman’s severed arm, oxygen, artificial respiration, keeping on talking to her. Things that save a life. Moments later, our ambulance men come back, shocked and exhausted. One of the paramedics follows them.

  “Thank you for what you did,” he says, “and congratulations for keeping your cool. If it weren’t for you, we’d have arrived too late.”

  “We just did what we had to do, you know. It’s just lucky we happened to be here at that exact moment with the right equipment. I think, in a way, we need to thank the little girl in this ambulance. If it weren’t for her, we would never have been here.”

  The thrum of an air ambulance smothers the paramedic’s reply. Doctors and backup teams are milling around the casualty. We’re no longer needed, and we should leave to spare Thaïs the discomfort of an overly long journey. We carry on along the road without a word. Something has changed in the space of a few minutes, something that unites us in silence: a life saved because we were in the right place at the right time.

  36

  LES VALLETS, THE PERFECT FAMILY HOME. MY PARENTS’ HOME, my childhood home. With its big, boisterous happy mealtimes, its brightly colored shambles of a rumpus room, its fridge brimming with food, its blazing fires in the hearth, its cozy eiderdowns on beds that are always made up, its blackberry picking trips for making jelly, its tanning sessions beside the pool, its outings in the cart with Berthe the donkey hitched up, its tree houses, its surrounding meadows free of any habitation, its warm welcome all year round. Les Vallets, the house I love and that we all call the “happy house.”

  My parents are waiting impatiently for us on the doorstep. A swarm of children is looking out for us at the end of the drive; when they see the ambulance, they run toward the house, screeching, “They’re here, they’re here, they’re coming!” The ambulance sets off along the shady drive, I catch a glimpse of the house through the leaves, and I cry with tension and relief and joy.

  My parents have transformed a downstairs room into a bedroom for Thaïs—a beautiful well-lit room, which is both quiet and central, so she doesn’t feel left out of family life. All the medical equipment is there and already operational, laid out in exactly the same way as in Paris for Thaïs to get her bearings. The oxygen machine to the left of the bed, the one for feeding to the right, next to the little table where we keep her medication. Every detail in place. We settle Thaïs on her bed with infinite care, and she doesn’t even grimace this time, barely opening an eye and going straight back to sleep. It has to be said it’s been a pretty emotional day. Everyone tiptoes out of her room, and I close the door and give an involuntary sigh. Phew, we did it. She’s here and we’re here, for a month.

  The bags that need unpacking can wait. Barely half an hour after we arrive, two nurses come knocking at the door laden with equipment. They introduce themselves, smiling warmly: Chantal and Odile. They’ve come to meet their new little patient because they’re going to be taking care of Thaïs while we’re here.

  “Exactly like the in-home care team in Paris,” Chantal tells us, “well, almost exactly.”

  They are part of a palliative care team. I should be pleased to see them, but my throat constricts as I watch them unloading the equipment into a corner of the room and going over to Thaïs together.

  Palliative care . . . the expression makes me shudder. It has the same sad ring to it as a swan’s song, because it so flagrantly implies that death is looming. I know Thaïs is going to die soon, but this reality is painful; and I’m balking at the thought of letting a palliative care team look after her. The nurses are familiar with this reticence from parents, so they explain what they do, taking their time, using words such as “gentle,” “comfort,” “pleasure,” and “well-being.” At no point do they define their charge in terms of the illness; they don’t talk about a “patient” but a “person.” Their attitude can be summarized in one sentence, “Adding life to the days when you can’t add days to the life . . .” That’s the definition of palliative care, isn’t it? It’s my theme. So let’s get on with it!

  Chantal was right to point out that there’s a difference between what they do and what the in-home care team do. She and Odile know how to stray from the beaten track of conventional medicine in order to make Thaïs’s life easier. Their experience is enriched by a myriad techniques, massages, and empirical knacks. They use creams, essential oils, and ointments to give their little patient relief, with one directive: to limit the amount of medication given and simplify intervention as far as possible because treatments are more efficient the easier they are to administer. On the other hand, they’re quick to use extreme measures when circumstances require—like in mid-August when Thaïs’s neuropathic pain reaches a new level. With the doctor’s authorization, the two nurses set up the morphine pump that the in-home care team haven’t wanted to use want to use for fear that it would prove too complex or too much of a responsibility for us. Chantal and Odile don’t shy away from it; they know from experience that at this stage the only way to relieve Thaïs’s pain is to give her morphine continuously. They also know that we can handle the equipment because we’re working toward the same goal.

  Thérèse comes to join us at Les Vallets, is greeted with all these changes, and immediately adopts this innovative approach to Thaïs’s care. She has no trouble getting used to it; it’s how she’s been doing things anyway, instinctively, for nearly a year.

/>   Later, when we go home to Paris, we share these wonderful experiences with the in-home care nurses. They extend their care plans to include practices we learned from the palliative care team. Of course they apply them to Thaïs, but not to her alone. Plenty of sick children are still benefiting from them now.

  It’s fascinating. Wherever Thaïs is, children are drawn to her. In Paris, Gaspard’s friends always visit her when they come to our apartment, completely naturally. We just have to take the time to explain things to them before they see her. Even so, one of them did admit as he went into the room that it gave him goose bumps . . . and there’s nothing strange about that. But once by her side, not one child backs away or is put off by how she looks. Far from it, they behave remarkably normally. They’re not embarrassed to inspect all the medical equipment, asking how the feeding machine works and wanting to know about the illness. They stroke her, talk to her, and play with her. Lots of them tell her she’s lucky not to be at school. Childhood innocence is a wonderful thing. . . .

  Thaïs has become a mascot at Les Vallets. Young and old, her cousins are happy to be spending a vacation with her and getting to know her better, and they never miss an opportunity to prove this. We haven’t established any rules or imposed any limitations on visitors. We’ve told them that Thaïs’s door is always open to them, except during her treatments. That’s the only restriction, and they respect it, without fail. So, when she’s not being tended to, the other children see her to their heart’s content. In the morning before charging at the breakfast table, they each go to say hello to Thaïs; and in the evening, they always drop in to say goodnight. Throughout the day, they come and pay her regular little visits.