It may seem ridiculous, but I feel shy. I’ve dreamed of this so often over the last six months. I take her in my arms, and when my lips touch her soft cheeks, my heart is unleashed. I’m like a bulimic giving in to a binge: I can’t stop myself now, I consume her with kisses.
Azylis calms under this avalanche of kisses. With gentle little movements, she strokes my cheeks and mouth as if they were fragile, otherworldly. Then, laughing, she grabs my nose, my lips, my chin, kneading and pulling and twisting. She’s no longer frightened, as if suddenly remembering all the kisses we gave her when she was a newborn. There’s nothing better than a kiss to tell someone you love him or her. And to know you’re loved.
I come out of the hospital to call Loïc and let him know about this event. The moment he picks up, I yell into the phone, “I’ve kissed her, I’ve kissed her!” Passersby stare at me, partly amused, partly taken aback. If they knew . . . Oh no, I won’t be forgetting that kiss anytime soon.
It’s the butterfly effect. How one small event can trigger major consequences. Azylis’s now normal immunity will have repercussions throughout our family life. It dawns on me as we head back home: The quarantine is over, Azylis can leave her bedroom, she’s free to come and go as she pleases in the apartment.
She has so much to discover. And not a minute to lose. I open the door, drop my bag and coat on the floor in the hallway, and take my daughter on a guided tour of the premises. She’s fascinated by this world that’s finally being revealed to her, scrutinizing every texture, every color, every item. She doesn’t know where to look; she wants to see everything, grasp everything, touch everything, as if catching up on the months of isolation and frustration behind her always closed door. Or as if she wants to store up a maximum of sensations before finding she’s shut away in her room again. She doesn’t yet know that that time has passed, that she now has her whole life to enjoy this. Her whole life.
The new discoveries don’t end there, not by a long way. I’ve kept the best for last. I slow down as I reach Thaïs’s room. Excited by so many new experiences, Azylis is squirming in my arms. I pause in the doorway, take a deep breath, and go in.
Azylis stops wriggling, stares at her sister lying in bed, and flicks a look of surprise at Thérèse sitting beside her. I come right over to Thaïs; her heart rate suddenly accelerates, and she opens her eyes wide; she can feel that her little sister is there. With a slow, infinitely gentle gesture, she half opens her hand. Azylis leans forward, frowning and serious. She seems to be delving through her mind, trying to find a particular memory. All of a sudden, she takes her big sister’s hand and doesn’t let go. Thaïs and Azylis recognize each other.
I leave them like that, hand in hand, their faces turned toward each other, in Thérèse’s safe care. Gaspard needs picking up from school and doesn’t yet know the good news. On the way home, I tell him there’s a wonderful surprise waiting for him at home.
“A new guinea pig?”
“No, even better.”
“I can’t think of anything better. If it’s not a guinea pig, I don’t think it can be that great.”
When he sees Azylis settled in Thérèse’s arms next to Thaïs, he wails: “Be careful, you forgot your masks! And Azylis isn’t even in her room! What’s going on? This is all wrong. What a disaster!”
But there’s no disaster here. Quite the opposite. I explain that everything’s fine and Azylis no longer needs to be kept apart from everything.
“Are you sure?” he asks, perplexed. “Absolutely sure?”
“Absolutely sure,” I tell him.
Then Gaspard gives a triumphant yell, lunges at Azylis, and hugs her in his arms, crying with happiness. I realize just how much he’s missed her . . .
Loïc finds us all like that, cooing around Azylis. He smothers his daughter in kisses, all the kisses that have been suppressed for months. What a lot of intrusions into her personal space that’s been so carefully preserved until now! But Azylis isn’t complaining, she’s savoring every kiss. And she laughs with delight when her velvety cheek rubs against the rasp of her father’s.
From then on, daily life becomes much more straightforward, for everyone. We all have a sense of newfound freedom, and we make the most of it, often gathering in Thaïs’s room, just for the pleasure of being together.
Gaspard, Thaïs, and Azylis get to know each other. Over the course of these visits, the two sisters develop a wonderful complicity. Gaspard is very taken with Azylis, spending most of his time with her, and always reminding her she mustn’t get upset if he leaves her because he’ll be right back.
Azylis makes rapid progress now that she has contact with other people. She even starts taking more interest in her bottles as she sees us eating too. Loïc and I are glad to turn this corner, even though our reflexes have a hard time getting adjusted. There’s no telling how many times we go over to Azylis without a mask and have a horrible feeling we’ve forgotten something important.
There’s a spring-like warmth hovering in the air. A tentative sun seeps through fluffy clouds, and it’s enough for us to forget the winter. This impression of spring gives me the courage to step outside with Azylis in her stroller, without any protection. Today is her first official outing.
She opens her eyes wide in amazement, contorts herself to watch passing cars, follows passersby with her gaze. She avidly devours all these new experiences and tilts her head toward the sun’s warm rays. A light breeze takes her breath away. She inhales deeply, trying to catch her breath, and her little nostrils quiver. She’s just met the wind.
Walking behind her, proud as Artaban, I steer the stroller, my face flushed with pleasure. This walk in the fresh air invigorates me, mind and body. I had to wait eight months to have this small pleasure again. Eight long months, almost a whole pregnancy. As if a new life were beginning today for Azylis, and for us. An ordinary life, the one we were hoping for.
People on the street hurry along, heads tucked between their shoulders, eyes pinned on the sidewalk. I’m surprised by this speed; I don’t have the same urgency. I take slow, steady steps, savoring every moment of this outing. These are magic, floating moments, inflated with elation.
I walk along the middle of the sidewalk like a conqueror. A few passersby grumble, cursing as they step aside, bump into me, or overtake me. It doesn’t get to me; their recriminations ricochet off my bubble of happiness. I’m taking my little girl out for a walk, and that’s the only thing that matters. The world can stop revolving, it’s all the same to me. Once around the block is enough of a pleasure for me. I feel like any other mother pushing her stroller, but with one important difference: I’m conscious of the incredible good fortune this constitutes, the simple act of taking your child out, quite normally, head held high.
30
CAPILUVE. IT’S A STRANGE WORD, AND AN UNUSUAL PRACTICE. It’s straight out of medical jargon and describes the technique for hair-washing when someone is bedridden. Since Thaïs has had to keep to her bed, we’ve learned the art of capiluve. Several times a week, with the nurses’ help, we undertake this painstaking ritual . . . to Thaïs’s absolute delight, because if there’s one form of care she likes better than any other, it’s definitely this. It’s such a delicate, gentle process.
Thaïs starts smiling when she hears us preparing the basins, bringing in pitchers of warm water, and laying out towels, brushes, the hair dryer, and hair slides. She quivers with impatience as we position her across the bed, her head held firmly between the nurse’s hands. She sighs with pleasure when the water flows over her hair, and purrs beatifically when agile fingers make the shampoo lather with their regular massaging. She delights in the feeling of the brush gliding over her hair and the dryer wafting her pretty curls. She ends up falling asleep peacefully, relaxed and elegant in her braids or bunches.
I love Thaïs’s ability to capture every happy moment. She has an innate capacity for detecting and extracting nuggets of pleasure right at the heart of her pain. This means that
most of her treatments are sources of happiness because all she remembers of them are the benefits. Like when we massage her to avoid bedsores. Thérèse is an expert at this; she can spend hours anointing that paralyzed little body.
Each of us makes a special effort with all of her treatments. They’re becoming increasingly numerous and frequent, so there’s hardly a break between administering her medication, changing her, washing her, massaging her, and boosting her oxygenation. We turn these necessities into pleasures: a hand on her cheek during an oxygenation session, stroking her arm while her blood pressure is checked, a stream of sweet nothings while changing her. Thaïs can sense all the love and tenderness in these gestures. Precious little pockets of happiness nestling where we least expect them.
Hearing. It was all she had left, a frail link maintaining a semblance of normal communication. It’s over. . . . When the tray laden with utensils and drugs clattered to the floor, Thaïs wasn’t startled. She didn’t even blink, but Gaspard and Thérèse ran to see what the racket was. She can’t hear anymore.
Yet again, I discover this deterioration almost by accident. Until then, she’d given no sign that would have allowed me to guess any sooner. As with every other time, it comes as a blow to me. But perhaps not such a brutal one as its predecessors, because I now have such confidence in Thaïs and her incredible ability to adapt. I’ve seen it before, when darkness invaded her sight without casting shadows on her heart. Today’s silence doesn’t surprise her any more than that darkness did. She’s not frightened of being cut off from the world; she isn’t now, and she never will be. She’s already on to the next stage, abandoning standard means of communication and appropriating other more subtle methods.
Our five senses are a luxury, and we’re all too unaware of the fact. We have to lose the use of our senses in order to appreciate their true value and to realize their limits. In fact, mastering hearing, sight, a sense of smell, taste, and touch is at once a form of riches and of poverty. Riches because the senses complement each other perfectly, allowing us properly to perceive the world around us. Poverty because when we have the benefit of all our senses, we make do with them alone. Every exchange is made through these natural, instinctive, and restrictive channels. We can’t imagine it any other way. But surely that’s all there is: We have ears to hear, eyes to see, a mouth to speak, a nose to smell, and skin to feel? I don’t think so. That doesn’t take full account of human nature and our visceral need to communicate, share, and understand.
As a child, I read Helen Keller’s moving story; I really admired the degree of understanding and communication achieved by this young girl who was deaf, blind, and mute. Deaf, blind, and mute, a state now familiar to Thaïs. Except that, to complicate the situation still further, my daughter is almost completely paralyzed. But still, in her case as in Helen Keller’s, her will redoubles her abilities. Nothing stops her. When her senses no longer respond, Thaïs finds an unhoped for means of reestablishing connections: She makes the most of the slightest movement, the tiniest sound; she uses the density of her skin, the warmth of her body, the weight of her hands, the beat of an eyelid. She transforms all of these into signs of life, and proves with every moment that she really is here and understands everything that’s going on. Thaïs is prepared to share what she’s experiencing with us, but on one condition: We have to make the effort to meet her halfway, to receive her messages and decipher her codes. She needs us to listen out, not for her voice but for her whole being. And that’s the secret: as an alternative to the luxury of the five senses, Thaïs offers us the riches of empathy. She’s inviting us to develop our ability to sense other people’s feelings.
I don’t believe in spiritualism or telepathy. I believe in a dialogue between souls, from one heart to another, in communication through love. No, Thaïs can’t see anymore, but she’s looking; she can’t hear anymore, but she’s listening; she can’t speak anymore, but she’s talking. And she doesn’t need her senses to do it.
31
EVERYTHING’S SO QUIET. TOO QUIET EVEN. I STICK MY EAR to the baby monitor. Not a sound . . . I jump out of bed, catching the bedside light at the very last minute as it topples perilously, and run to Thaïs’s bedroom. I go over to her, feverish with concern, and crane to hear her breathing. I rest my hand on her chest. Her heart’s beating peacefully. Her breathing is regular. She’s just sleeping. Phew!
I stay a few minutes longer, watching her, then go back to bed. Loïc chunters, annoyed at being woken yet again. I look at the phosphorescent display on the alarm clock: It’s four thirty. This is the third time I’ve been up tonight to check that Thaïs is all right, and sadly it won’t be the last.
This scene is played out every night. However hard I try to reason with myself, I can’t calm my fears. Since Thaïs has been back at home, since her days have been numbered, I have only one terror: that she’ll die all alone, without a sound. That she’ll need me and I won’t know it. That she’ll ask for my help and I won’t hear her. So I’ve restricted my activities in order to devote almost all my time to her. I balk at leaving the room and walking away from her. I want to be there when the time comes. Of course, if there’s an abrupt change in her heart or respiration rate, the alarms on the machines would alert me, day or night. But I don’t trust them. They could happen to malfunction just as Thaïs is dying. Which is why I’ve set up the baby monitor connecting me to her when I’m not in the room.
The transmitter sits right next to her, a few centimeters from her mouth; the receiver is never far from me, going with me into the kitchen, the bathroom, or the living room. I only leave it when Loïc or Thérèse are at her bedside. Before I go to bed, I set the volume on maximum so I can hear her breathing. It soothes me and lulls me but also prevents me from giving in to a really deep sleep: I sleep with one eye and one ear open, with my senses still on the alert. The least sound or the least silence is suspect and wakes me. My anxiety builds up with each passing day.
As part of the in-home care team, a pediatrician who specializes in pain relief regularly comes to see Thaïs to evaluate her condition and her needs. This morning she notices the rings under my eyes, how pale and jumpy I am, and guesses that I’m worrying about something. I tell her what’s causing my broken nights and admit that I’m keeping up an uninterrupted vigil. I feel tremendous trust in this woman, for her professional abilities but also as a person. We talk a lot, often about medical issues, sometimes about more personal things. Today she grasps my distress at a glance.
So, standing there beside Thaïs’s bed, she describes her experiences as a doctor tending to children with cancer. Her voice is gentle, full of tact, respect, and propriety. She tells me about a little girl coming toward the end of her life, whose mother watched over her night and day, and who decided to die in the brief interlude when her mother popped out to buy a sandwich. She carries on with other similar examples. I look away: I’m beginning to see the moral of the story. And I don’t want to hear it.
“Let your daughter choose.” No, I can’t do that. No, I don’t agree. It’s obvious to me that Thaïs wants me by her side at the crucial moment. How could that possibly not be the case? She’s too little to go through this alone. And yet, deep, deep down, I can tell I’m on the wrong tack. I’m putting myself in her position, transposing my own fears. Thaïs may not be afraid of dying; she accepts events in her life so openly. She’s already proved this to us so many times: She wants us to go on living and not put our lives on hold because of her. My constant presence is inappropriate; I’m being overbearing.
What if she wanted to be left alone? She can’t tell us that; and even if she could, she wouldn’t dare. No child would dare tell his or her parents that—it’s too harsh . . . and yet it’s true. I know this but can’t accept it. I want to graft myself onto Thaïs because if she dies when I’m not with her, I’ll regret it for the rest of my life. I’ll feel guilty for slacking in my vigil at that particular moment. I consider it my duty as a mother to be there. And yet . .
. I can’t ignore the soft little voice whispering to my heart, “Let her live her way.”
Yes, the doctor’s right, one hundred percent right. I can’t control everything, master everything. My little girl wants to be able to choose. I give in; this isn’t an abandonment or a lack of love. Quite the opposite, it’s one of the most remarkable ways I can prove my love.
My decision is made, although it pains me. I’m going to loosen my grip, a little, and try to go back to as normal a life as possible. It’s the only way to move forward. Of course I’ll still take care of Thaïs and watch over her, but not excessively. I hope I’ll be able to. I’m shaking at the thought.
Good resolutions shouldn’t be kept waiting; encouraged by the doctor, I unplug the baby monitor and stow it in the bottom of a drawer. Right at the bottom. Far, far away. That evening, I go to say goodnight to Thaïs calmly. I check her alarms several times and linger a while by her side, delaying the moment when I leave her alone. Eventually, I come out of her room but don’t close the door. Once I’m in bed, I cock my ear and assess the silence. The only thing disturbing it is my stifled sobbing.
Everything’s quiet. Too quiet? No, everything’s normal. I can sleep in peace. More or less. Several times I have to battle with myself to stay in bed; I so desperately want to go and check that everything’s okay. But I resist the urge. Day breaks at last. I stretch triumphantly. I did it!
We’re walking on eggshells, or almost. When we go into Thaïs’s bedroom this morning, we have to watch where we put our feet: The Easter Bunny snuck in here in the night. Easter is a major celebration in our family, rather more so this year than the last, in fact. Gaspard wanted to do the traditional egg-hunt outside, in the nearest park. We reminded him that Thaïs wouldn’t be able to come with us if we went out, so he asked me if we could all be together in the living room like at Christmas time. We had to explain that it would be tricky for Thaïs, it would be better to arrange the festivities around her in her bedroom. He let us convince him out of concern for his sister, and because we promised him that, as a trade-off, he would get to hide some of the eggs, a privilege traditionally reserved for his father.
Two Small Footprints in Wet Sand Page 11