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My son was born twice: the first after a hot afternoon in late June in a bustling East London hospital, then five years later in a Queens children's home in New York.
I was six and a half months pregnant when I was diagnosed with pre-eclampsia. The day it happened, I had made a series of insignificant things: buy bread, edit a story, call my parents in Bangladesh. In the afternoon, my midwife came for a routine visit. She checked my blood pressure and found that she was high. She asked me to pee on a stick. When I returned it to her, she told me to make a bag.
It took us 10 minutes to get to the Homerton Hospital, where the slightly worried medical officer told me that the only cure for pre-eclampsia was delivery. I had trouble understanding how to give birth 10 weeks earlier could be considered a cure, but I did not have time to discuss it. They even prepared me for surgery, a needle in the back, compression socks on the feet. I lay down on the operating table and my husband put my head in his arms. I did not feel any pain, I was just pulling, tipping and rocking, as if someone had attached and floated to me. Then, a silence that I could have sworn for hours, but only lasted a few minutes, after which I heard a little cry. A nurse gave me a glimpse of my son's swaddled form before taking him to the neonatal intensive care unit. I did not know then that I would not see him again for three days, that he would stay in the hospital for two months and that once released, he would refuse to eat for five years.
WWe arrive at St. Mary's Children's Hospital in New York on a Monday after a seven-hour flight from London. We have been saying for weeks now, "Where are we going?" "At the school of restoration!" "Who will feed you when we return?" "Me! I will feed myself! "
We have listed the things we would like to learn to eat: sandwiches, cheese, French toast, pancakes. We counted the days. My husband and I transformed our home and used our credit cards to the fullest. We had the opportunity to rent the little girl we rented in the house we had to rent in a suburban enclave of Long Island. And now, here we are.
Everything is as I imagined – glbad and steel, high ceilings, expensive furniture – except silence. I am used to hospitals in London and Dhaka where, no matter what time you show up, it is always difficult to find an empty seat in the waiting room. At St. Mary's, the plush blue chairs are vacant; the panoramic views of Little Neck Bay are appreciated only by a handful of nurses during their breaks. Because I am so absorbed by our tiny part of this story, I notice the calm but do not stop to surprise you. Anyway, our unit, the Cindy & Tod Johnson Center for Pediatric Eating Disorders, is down and boiling. In the central area where food therapists work between sessions, the sound of gossip and keyboards is heard. In the corridors, parents bring their children to their sessions in therapy rooms equipped with high chairs, televisions and tiny kitchenettes.
Moments after our arrival, we meet the program supervisor, Stella Yusupova. It has been more than a year since I correspond with Stella. She has been remarkably efficient in advising me on everything from housing to day care. Stella takes us to the observation room, where we will watch our son via a video while his therapist works with him.
"He will resist," she tells us. "It will be hard sometimes to watch."
"We trust you," I say, wanting her to love me. "We tried everything."
We have. We consulted pediatricians, nutritionists, teachers, psychologists, speech therapists, homeopaths. Everyone has told us a form of "it'll be better". At Great Ormond Street, the best children's hospital in London, they told us that as long as he did not starve, they could not do anything.
He does not die of hunger. We found a food that he will accept: baby porridge, a finely ground combination of oats and powdered milk. We mix it with formula, extra calories and vitamins in powder form. When we are really lucky, it allows us to mix proteins and vegetables, but only if it does not change the taste, texture or smell of what is in the bowl.
Every day, for nearly five years, we nervously heat milk and measure powders. For almost five years, we bought it with an iPad, we forced him to open his mouth and put the spoon against his lips. For five years, we dread every meal, knowing that everything he has consumed has never been enough, knowing that we would have to wake up the next day and start from scratch again. For the last five years, anxiety has been devouring us, because we wondered if it would be a good day, eating all his porridge, or refusing, starting, or going on a new hunger strike for a week. . During these years, our parenting was focused on food. We left the house only for small intervals. We have never eaten a meal together. We watched other children with wonder and envy.
There is no specialized feeding clinic in London or anywhere else in the UK that could help us. After frantic searches, contacts with friends, desperate messages on online forums, we finally heard about St Mary's. We carried out the evaluation hoping that by the time we were removed from the waiting list, something would have moved and that the whole trip would have become useless. And of course, that was not the case. So we flew and went through the glbad doors, dreaming of sandwiches.
IIf before, I had wondered what my first moments of maternity might look like, I would not have considered separating from my child. I had been warned of sleep deprivation, exhaustion, unspeakable damage that my body would suffer, but I had not imagined myself alone. One day, I was looking for strollers and the next day, I found myself immersed in the dark world of prematurity, where my child was not quite mine. My belly was deflated, my body sawed in half and yet the baby who had pulled me from the inside was not in my arms.
At first, the catheter had chained me to my hospital bed. Then it was my blood pressure that they could not go down. My husband was shuttling between the delivery unit and the Neonatal Intensive Care Unit (NICU). For several hours a day, he was doing kangaroo care while holding our son against his bare chest. Later, I would see pictures of the two together, the face of our son and his little hands gripping his father. These precious early days would bind them to each other, a mysterious and secret link that I would always covet.
On the third day, after an argument with a midwife, I was allowed to go to the NICU with a wheelchair that would just back off. I was inverted into the maze of the hospital in a room filled with machines that rattled, beeping and buzzing. When I was finally at his side, the plastic dome of the incubator divided us. One layer covered half of his body, the rest of him bare, except for a thin layer of black down on the skin, the lanugo that had to be replaced by fat in the last weeks of the pregnancy. I saw something that I was not supposed to see; all this had to happen in my body but far from my sight.
I had to make milk. At the present time, the baby was taking intravenous solutions, but he was soon going to need calories. First of all, I had to squeeze the colostrum with my hands. I pressed and squeezed. As the big yellow drops came out – more phlegm than milk – I had to catch them on the tip of a syringe. For days, I have not managed to do enough, so they put it on a formula he did not tolerate. They weighed it every Wednesday and Sunday: a verdict. Night after night, I knelt on the edge of my hospital bed and hurt myself, imploring my body to cooperate.
A thin plastic tube slipped into his nose, then into his esophagus and into his stomach. To feed him, they poured small amounts of milk into the tube and let gravity pull the milk into his body. Before each meal, they vacuumed the stomach. An empty stomach was a good thing. A stomach full of milk from the last food meant that it did not absorb food properly. If the milk came out green, there was a risk of infection, the dreaded necrotizing enterocolitis that preterm babies are likely to have.
For two weeks, while the doctors were working to lower my blood pressure, I lived in the maternity ward. On the other side of the curtains that separated us, I heard the sound of women arriving just after delivery. I heard their children crying. I found blood clots in the shower drain. I heard their families cooing and I saw their blue and pink balloons tapping on the ceiling. In the morning, the nurses placed cereal boxes and milk jugs on trolleys. I met the women and babies I had heard all night. The women dragged themselves on slipped feet while holding their belly. Who knew what secret wounds rested under their joined hands? My own wound had been infected. In addition to antihypertensives, diuretics, morphine, I was given antibiotic treatment. After a day or two, mothers and babies returned home and new ones arrived. I spent hours near my baby's incubator, often looking through the plastic and watching the rays of his rib cage go up and down.
As long as I can remember, I was scared of never having children. It was not that I was desperate to have them, only that I was convinced that I could not. I did not realize until much later that I had inherited this fear from my own mother who, after accidentally becoming pregnant at age 21 and newly married, struggled with infertility during more than 10 years. During a recent trip to Paris, walking down the street of the trade, I asked my mother how it was to move around the world when my father got his first job at the UN. I thought she could talk about her fear of the French, maybe tell me an old story about how they treated their dogs – like kings – but instead, she told me that She was sad all the time because over the years she had to face the possibility that there would be no more children. I imagine now, pushing my stroller with red and white stripes in a gravel Parisian park, the cold winds dripping with tears.
In the end, my fears were not unfounded. There have been several miscarriages, ultrasounds with missing heartbeats, a visit to the hospital to remove the last of a pregnancy left lodged in my body. A doctor told me that I had a lot of what are called "natural killer cells", which at first seemed like a joke (it was not the case); the next time I got pregnant, he administered me high doses of steroids. For 12 weeks, my hair fell and I was in a state of perpetual rage. Eventually, around the age of three months, I started to feel better and the chances of things going wrong started to fade. I badumed that after all, I had a pregnancy without a story – maybe even some kind of moral credit, a little karmic abundance – and that I could now join the ranks of all the other women who crossed the mirror to become maternal.
Stella hands me a binder containing the rules of St. Mary's feeding program. We must arrive at the hospital at 8am every morning. We will have four therapeutic meals a day, with breaks of 90 minutes. She shows us the different areas we can use to cover the weather: a game room, a lawn, two cafeterias, a small library. At 2:30 pm, we will be sent home. I will be given strict instructions on how and when to feed my son for the rest of the day. I will take notes on every meal, document every gram that he eats and every millimeter that he drinks. I am given a painting with pictures of different types of poo. I'm going to write what guy came out and what he looked like.
Stella introduces our therapist, Kisha Anderson. Kisha is tall with long, dark braids and a deep, soothing voice. I like it right away. Right now, she presents three things that are about to change the life of our son. First, the brown spoon. Apparently, the silicone weaning spoon we use is too narrow and too deep; the brown spoon is shallow, encouraging it to open wide while allowing food to slide easily into its mouth. Then, Kisha lays a foam handle on the spoon, which makes it easier to hold properly. And finally, she sets a timer. Each meal will only last 20 minutes.
The type of therapy they will use to bring our son to eat is called Applied Behavioral Analysis and consists of a rule-making regime with constant positive reinforcement. Kisha shows him a series of toys and asks him to choose. iPad or toy train? iPad. iPad or toy car? iPad. iPad or action figure? iPad. She takes notes. The iPad is now the reinforcement, the official carrot.
Kisha allows her to watch 10 seconds of the iPad, then she says "my turn" and removes it. She plunges the tip of the brown spoon into a yoghurt tub and slowly places it in her mouth. He is frowning, but do not spit it out. Immediately, she gives him back the iPad. He watches 10 seconds of Despicable Me 3, making fun of a joke involving a banana. Once again, she plunges the tip of the spoon into the yoghurt. "Open your mouth," she told him. I have said these words a thousand times. He spreads his lips and quickly recovers the small amount of yoghurt. Again, the iPad. She takes notes. At the third try, he refuses. "I do not like yogurt," he says. "Take your bite," she said. He shakes his head. "Take your bite," she repeats.
Around the sixth or seventh round, my son opens his mouth and the pink yogurt disappears. Kisha beams. "Wow!" She exclaims, "you've blown me away!" She pretends to fall from her chair. After his 10 seconds of iPad, he does it again. And even. She dipped more and more spoon into the yogurt container. At first he will only let the tip of the spoon get into his mouth – the habit that has prolonged every meal – but Kisha insists that he opens his mouth and empties the spoon. He will not have his iPad until he has it. Almost immediately, he obeys.
In the observation room, my husband and I look at each other and shake our heads. This is the first time that he eats something that is not oatmeal, which is not beige, the first time that he takes a spoonful of all thing. Kisha is wildly enthusiastic whenever he eats a piece of food. She is impbadive when he refuses. "Take your bite," she repeats. When he waved his arms, she said "quiet hands". It shows no frustration, no anger, no exhaustion. "Take your bite," she said, calm. He takes his bite. He clears his spoon.
It's the first day. We return home in shock and disbelief.
TThe maternity nurses were tired of hearing a room. "Take me out of the parish," I prayed. "I can not listen to babies anymore." Finally, they yielded. In the gloomy heat of twilight or the greyish pink of the first light, I was grateful to be able to cry behind a closed door.
Homerton has a level 3 NICU, one of the best in the UK. They place the sickest and most tiny babies in two rooms at the back of the unit. Once he began to breathe on his own, our son was transferred to a reduced-dependency room. Still, there were rigid rules that I had to follow. I was not allowed to bring him in and out of the incubator too much. I was not allowed to let him badfeed, even if he opened and closed his mouth like a fish. Every time I approached him, I had to wash my hands and rub them with a disinfectant. Other than my husband and I, no one was allowed to touch him. When people came to visit, they could at best look in the room that he shared with seven other babies. There were sweet and gentle nurses and fragile nurses at work, but I had to suck them all, because when I was not there, they were doing all the maternity.
When my husband had to go back to work, friends came to keep me company. I asked them to bring cake. My friend Bee arrived with small chocolate muffins. "Poo cupcakes!" She announced. "You have to poop." I did not let my sore heal because I was sitting all day in the high back chair next to the incubator. I took additional illicit doses of painkillers. In the courtyard of the hospital, I would sometimes perch on a summer square and show photographs to those who wanted to watch. He was there, two-thirds bed. The tube in his nose. The IV goes in his ankle. He was so small, so wrinkled and translucent that it was hard to imagine that he would someday resemble other babies in the maternity ward.
There are so many things that I did not know then. I did not know that we would all end up going home. The first year, I would wean him when the books would tell him that it was acceptable, because it was seven months that I spent the night, because I had pain and fatigue and I wanted to rewrite books . That we would bring him back to the hospital several times; that there would be two episodes of pneumonia, vomiting almost every night, inhalers and steroids and nebulizers. That day, he would eat a piece of bread, the first and the last time, and I would think of this piece of bread every day for four and a half years.
The second year, I would start a novel and the novel would concern a missing child. In third year, I would find a trauma therapist. He was asking me to come back at that time to the hospital where they had taken me to the operating room, and while I was telling the story, he made me move my eyes. After 10 sessions, I would tell him that I felt much better and that we would never see each other again. The next therapist, Jill, would be a marvel. After a year of weekly sessions, I spoke casually about miscarriages and tentatively suggested that perhaps the absence of these other babies weighs heavily on the one who survived. Could this have something to do with his refusal to eat?
Photo courtesy of Tahmima Anam
In fourth grade, I would give birth to a little girl. A nice Sri Lankan doctor would deliver her by caesarean section – also premature, as small, but especially, not so early, not so small. After delivery, my bed would be pbaded in the NICU and the baby would be draped over my chest. She would look me in the eyes and we would recognize each other and a tiny part of me would be looked after.
And I did not know, in the first days of his life, that my son would have entered the world without conviction, that his refusal to eat would stir us up, that from time to time I would ask him: "Are you hungry, baby? ", He replied," mom, I'm always hungry "and every part of me would open again.
I did not know anything about that. I was with him all the time and yet I did not manage to join him. I arrived in the middle of the night and I realized that they had changed the tape that kept the feeding tube stuck to his cheek. One day he was decorated with bear, the next day there were butterflies. The blanket under him was of a different color. A person in gloves had raised him, had changed his diaper. Someone else than me. Our contact had to be treated by a nurse, all the connections disconnected, the machines emitting frantic beeps until it was placed against my chest and connected to the screens that judged its vitality. Often, when I held him in my arms, he cried, a weak, desperate, tearless complaint. I hurt him, moving the needle in his foot, rubbing against the tube in his nose. I quickly asked them to take him back to the incubator, and then I ended up there, wearing my useless shirt.
During the many hours of counseling I've had to get rid of the trauma of my son's early birth, the time I come back again and again is not the time when he has it. extracted from my body – I have no memory of it – but by the time I turned to leave it to the NICU, they finally managed to get me out of the hospital. Despite my protests, I had to go home while my child was behind. My husband made my bag and called the taxi. I was standing in front of the incubator and my legs were fixed to the linoleum floor, because I was thinking about the softness of my bed, the heat, the fact that I would live in rooms giving off a smell of linen rather than the smell. Bleach. I abandoned it to sound devices, the IV which sometimes made his leg swell grotesquely. I had gone there at night, I had seen the way they sometimes let babies cry for long intervals. The nurses were efficient, the best at work, but they had to share their love. So many tiny babies: it was impossible to contain them all.
EEven in Sainte Marie, where the rarest forms of feeding difficulties occur, our son is an anomaly. They refer to him as "cognitively intact"; there is no medical problem or learning difficulty that could have caused such an aversion to food. He has never had a tracheotomy or a gastrointestinal tube. He is not autistic. These two months at the NICU are the only notable thing in its history. All the other children who went through the unit during the six weeks of our stay had an illness or medical intervention that made feeding difficult or impossible.
He chats, sings, laughs and jokes during his sessions with Kisha. "I'm going to make this Cheerio disappear," he says. He pretends to put it in his mouth and then quickly throws it to the ground. Kisha's expression does not change. "Take your bite," she said, in a neutral and comforting tone. During the first week, he takes yogurts, scrambled eggs and oatmeal, all mixed to make a smooth paste.
The 90 minutes between sessions are long and I have to find ways to entertain ourselves. We scour the empty public spaces of the hospital, ranging from the spacious lobby to the open balcony. We sometimes see a nurse pushing a child in a wheelchair or taking encouraging steps in a walker. In the playroom, my son makes two friends: Lucia, a curly-haired toddler, and Larry, a four-year-old boy. Larry hugs him frequently. At first he gets back, but he eventually gets used to the sudden crack. Larry is autistic and refuses to eat anything but peanut butter and puffs, those rice-based snacks that are given to infants when they become familiar with solid foods. Kisha refers to these as dissolvable. When the time comes for my son to start with solids, it will be the things that he will try first.
Of the many children we met during the six weeks of our presence, only one will speak in complete sentences. Lucia is not one of them, although she is deeply expressive and charming, she laughs like a bell of church bells. His father is a pastor and his mother, Meghan, seems to me to be a kind of saint. In fact, she tells me that Lucia is suffering from a syndrome called Noonan's Syndrome, which affects everything from her growth to her digestion. Noonan is the cause of Lucia's small figure, her ebb, even her curly hair. They are here because Lucia refused to take any food from anyone other than Meghan. Nearly three years old and Meghan was separated from her daughter for only a few hours. Our three families meet between sessions; Meghan is always full of stories, and Larry's mother seems to have an infinite supply of Play-Doh in her bag, and in our time together, we form a sort of tribe.
Slowly, my boy and I are building a routine. We are greeted by the receptionist, Elaine, in the morning. We rush down and pee. He learns to wash his hands in a sink activated by a movement of the arm. I drop him in the therapy room and then rush to the observation room. I put on the headphones. I take notes. The session lasts 20 minutes, then I rush to congratulate him. We pee again. "I'm going to pee on your pee," he says. Run around the yard. Invent stories about the koi in the pond. Another session. Headphones, notes. Kisha is trying to phase out the iPad, leaving more and more time between rewards. Lunch: We wonder if we are going to the cafeteria before or to the back cafeteria. We put money in the vending machine and a Nutter butter comes out.
The nurses in the scrubland are beginning to recognize us and greet us as we pbad. From time to time, I see a family, a child in a wheelchair, parents sorting their packed lunches. There is an Asian woman who holds her adult son in her arms every afternoon, a canvas of tubes draped over her body as she rocks her torso. Pee again. Lucia wakes up from her nap and we play a bit with a fake ice cream shop. Last session: he is tired, he wants to go home. Finally, we are thrown into the furnace of the afternoon, another full day, calories measured and consumed, new foods, small nutritional miracles seeping into my son's body.
TBus 236 connects Finsbury Park to Homerton in London's East End. Every day in July and August of this year, he took me in his way and dropped me off in front of the maternity ward. It was a hot summer and I was on this bus every morning with a cooler of milk that I had pumped all night. When I arrived, I immediately read the chart that listed my son's feedings, diaper changes, and suction milliliters in his stomach. He was not sick, but his growth was very slow. Born to a little over a kilo, he had to reach 1.7 kg before he could send it back. These 700 grams took a two-month bus ride, the evening past London Fields, the smell of barbecues and sunset and people's enjoyment for the long, hot evenings.
Comme beaucoup d'autres mères, j'arrivais à l'hôpital à 8 heures du matin lorsque l'infirmière de jour commençait son quart de travail. Quand les médecins ont fait leur tournée à 10h, je les ai irrités en leur posant trop de questions, pour finir par celle qui me trottait dans la tête: quand le bébé serait-il libéré? (J'ai toujours reçu la même réponse: quand il est prêt.)
Mon mari est arrivé à l'heure du déjeuner avec de la nourriture et une demande pour que je rentre à la maison, mais je l'ai rarement fait. Le soir, il a dû me peler lorsque l'infirmière de nuit a pris la relève. Je lui ai murmuré à l'oreille que je n'aimais pas le regard de l'infirmière, puis, à minuit, je l'ai réveillé et je l'ai fait appeler l'hôpital pour lui demander comment se pbadait la nuit, s'il y avait des nouvelles, si le bébé pris son dernier repas, quelle était sa température? Mon mari est allé travailler tôt le matin et restait souvent avec le bébé tard dans la nuit. J'étais extrêmement reconnaissant envers lui un jour, enragé le lendemain. Il a pbadé tout cela avec moi, me permettant de prendre toute la place, de me déclarer à la fois victime et auteur de ce terrible épisode, en lui posant des questions auxquelles il n'a aucune capacité de réponse. L’incubateur, le tube dans le nez de notre fils, la fontanelle tendre de sa couronne, c’est la seule chose à laquelle je me suis permis de prendre soin.
Ces semaines pbadées à l’hôpital où j’avais un corps brisé, en train de guérir, et un deuxième corps, différent de moi, vivant dans une boîte en plastique qui ne ressemblait pas badez à un cercueil, ne ressemblaient en rien à ce que j’avais jamais connu. j'ai connu depuis. Parfois, vers la fin, lorsque les choses étaient stables et que mon fils prenait du poids et apprenait à se nourrir, je marchais dans les rues – les rares fois où je me permettais de quitter l'hôpital – je me sentais bien parce que mon enfant n'était ni mort ni mort, d'une manière ou d'une autre, je m'étais sauvé avec la terrible grossesse. D’autres fois, j’étais triste à l’esprit, une sorte de tristesse que je n’ai jamais complètement dissipée, comme si un petit grain de ténèbres avait été semé en moi à tout jamais, s’épanouissant doucement dans mes os alors même que mon enfant sortait de l’hôpital. envoyé dans le monde pour faire les choses que les bébés continuent à faire.
Et quand nous sommes finalement tous rentrés ensemble à la maison, deux mois plus tard, je manquais à l’hôpital, aux bips sonores qui me disaient à coup sûr qu’il respirait, aux infirmières qui faisaient la distinction entre la médecine et la maternité. J'ai raté la pièce sombre où j'exprimais du lait, les discussions avec les autres mères choquées, la satisfaction de remplir bouteille après bouteille de manne. Surtout, j'ai raté les chiffres qui indiquaient ses progrès, et donc les miens. Tout a ensuite été pbadé sous silence – les mois et les années pendant lesquels je n’avais toujours pas réussi à faire manger mon enfant, alors que sa peau pbadait du rose au porcelain et devenait légèrement verdâtre – tout cela s’est pbadé sans l’échafaudage de cet hôpital; non, il était caché derrière les murs de notre maison où un corps se cousait tandis que l'autre luttait pour trouver la lumière.
Avant sa libération, ils ont sorti le tube du nez de notre fils et nous avons vu tout son visage pour la première fois. Les plus petits vêtements dans les magasins pour bébés étaient encore trop grands, mais ses joues n'étaient plus creuses et il y avait même une légère teinte rose sur sa peau. Ils lui ont fait pbader un test de l’oreille, l’ont pesé une dernière fois et ont dit que nous pouvions le ramener chez lui une fois que je serais restée une nuit entière à l’hôpital. Nous avons été transférés dans la chambre trois, un dortoir où nous partagions un rectangle d'espace derrière un autre rideau bleu. Mon mari n'a pas été autorisé à rester. pour la première fois, nous n'étions que deux. Je le pris dans le berceau de plastique transparent qu'ils avaient placé près de mon lit, vérifiai qu'il respirait, le soignai, le reposai une minute ou deux, le plaçant dans un sens et dans un autre, puis le soulevai et recommençais . Pour la première fois depuis des semaines, je n’ai pas fait de pompe au milieu de la nuit et le lait a été trempé dans mon t-shirt et accumulé autour de la ceinture de mon pyjama. Toute la nuit, je pbadai la main sur son petit torse, posai mon doigt sous son nez pour sentir le minuscule souffle d'air chaud qui me disait qu'il respirait. Aucun de nous n'a dormi.
Le lendemain, nous sommes rentrés chez nous.
Notre petite famille est enfin née. Nous avons dormi ensemble sur des objets mous, des canapés, des oreillers et des couvertures. Je le sentais et le sentais. Les lumières vives de l’hôpital s’éteignirent, une odeur de médicament et de détergent s’échappa de sa peau et de ses vêtements. Il était facile de réinitialiser l'horloge, d'appeler le jour zéro, comme si nous avions ramené un bébé de l'hôpital à la maison, comme tout le monde. Au matin, il n'y avait personne pour m'aider ou me dire quoi faire. Chaque nuit qui pbadait, l'hôpital semblait plus éloigné. Je n'avais pris aucune note et n'avais enregistré que quelques photos de moi, l'air petit et gris. J'ai avalé mon médicament contre l'hypertension et j'ai essayé de tout effacer de mon esprit.
Pourtant, un petit gouffre s'était creusé entre nous. J'ai ressenti une connexion profonde, j'ai senti la balançoire de l'euphorie, l'amour désespéré et saisissant. Pourtant, je soupçonnais aussi qu'il y avait des parties de lui que je ne pouvais pas atteindre. J'ai vu comment il était avec son père, quelque chose de facile dans leur relation, comme s'ils se connaissaient depuis longtemps. I can’t say if this is why I became preoccupied with feeding him, or whether his refusal to eat was something more than just his little mouth rejecting food; perhaps it was a refusal to open up at all, a kind of border that could not be crossed, at least by me, not even by me.
Every morning when we pull up to the parking lot at St Mary’s, we tail a line of yellow school buses. The doors of the buses open, and instead of a tumble of children, there is the whine of a mechanical lift. The lift slowly deposits one child after another into the care of a nurse, who will wheel the child into what is referred to as medical daycare. The rest of the children – the in-patients – are those who can’t live at home. Meghan tells me she’s met a father whose child was born premature and is still attached to a ventilator. The daughter might go home in a year. The father tries to visit, but he only manages a day or so per month. When I question one of the nurses, she tells me the hospital is technically clbadified as a nursing home, for children too medically fragile to live at home.
Later, I convince one of the hospital authorities to take me on a tour. I find impressive, thoughtfully designed wards, sunshine streaming through large, unframed windows, playrooms and clbadrooms and communal dining rooms. All mostly empty. Through the open door of the cabins, I see children lying prone in the dappled sunlight, the filtered air around them silent except for the hum of expensive machines that are keeping them alive.
“Why is it so empty?” I finally ask.
“A lot of these children don’t have access to their families,” he says, with great sadness. “We try not to judge.”
Before we arrived, Stella warned us that it was unlikely our son would graduate to “table foods”, ie the sorts of things we consider to be food – those pancakes and sandwiches we’d dreamed of. There were so many things to work on: self-feeding, increasing the variety of purees he accepted, getting rid of the iPad. All of these would take time. She gently encouraged me to let go of the hope that he would abandon the purees altogether.
At the end of the third week, I’ve decided that Stella is wrong. He is putting the maroon spoon in his mouth; he is finishing an entire pot of yoghurt in 20 minutes. I start bringing in purees of different colours and flavours. One day it’s spaghetti and meat sauce. Another day it’s a bright-green spinach pasta. Everything is blended to the level of a high-end French restaurant, buttery, savoury, completely smooth.
Kisha starts to train me in what she calls the protocol. Now I’m in the room with him, and she’s watching on the screen. I try to emulate the tone of her voice. Every time he takes a bite, I cheer wildly. We make up rhymes and high-fives and mini dance routines. Whenever he is confronted with a new food he says “I don’t like that” or “That looks like a green poo.” Kisha instructs me to ignore the negative vocalisations and reinforce the eating. “Take your bite,” I say. Like magic, he obeys.
With three weeks to go, I am sure Kisha can teach him to chew and swallow. She starts by putting tiny bits of graham cracker on his back teeth. He parts his lips, bares his teeth, and tries to chew. “Chew chew chew,” Kisha soothes. He swallows, gags. Unfazed, she tries again on the other side. “Chew chew chew till it’s really, really soft.” He bobs his head up and down. “Not with your head, with your teeth.” He tries again, gags, vomits.
In the fourth week, Larry starts eating apples, and Lucia has a breakthrough. She starts to drink milk from a honey bear, a kind of bottle that can be squeezed to propel the milk into her mouth. She takes the honey bear bottle from her father, then her aunt. I can see the relief on Meghan’s face; over the weekend, she and her husband leave Lucia with their parents for two nights. “How’s it going?” I text her. “AMAZING.” We celebrate these victories together, cheering one another on. But my son is not able to chew. Kisha tells me it’s because he struggles to lateralise his tongue, which means he can’t move the food over to his teeth to grind it up. He tries to swallow it while it’s still solid, which is why he gags.
We keep trying. Tiny, crumb-sized pieces of graham cracker. Bits of toast you can hardly see. “Chew chew chew,” Kisha chants. Chew, swallow, gag, vomit. It goes on. We keep our spirits high and concentrate on the victories – he is spooning purees into his mouth by himself now, and there is a range of things he’s willing to eat. Over the weekend, we go to an ice-cream parlour and order him a milkshake. He drinks it down. These are miracles, unthinkable a few weeks ago. I want him to sit at the table with us and fight over the last piece of lasagne in the pan, but this is where our magic lives, the celebration of a boy putting a spoon into his mouth all by himself.
On our last week at St Mary’s, I meet a Bangladeshi woman and her daughter Mahima. Mahima was born at 27 weeks – just three weeks before my son. But the doctor on call inserted her breathing tube incorrectly, so she had spent the first three-and-a-half years of her life at St Mary’s, with a tracheostomy attached to an oxygen tank. Unable to take even the slightest breath without the ventilator, she had barely been out of her room that entire time. Now, at seven, she has been free of it for half her life, but her scar, a round pendant at the base of her neck, and the deep rasp of her voice, are permanent reminders of her injury. The therapists are just beginning to encourage her to taste a few things. Sweet potatoes on the tip of a spoon, a little smear of avocado.
I have often thought about all the children my child could be. That he could’ve been born at a reasonable time, in a reasonable way. That he might have eaten. That he might have been less of a mystery to me. That he might not be afraid of hand dryers in public bathrooms. A child less fragile, less a reflection of the profound sadness of being alive. In those first days of his life, he seemed like an incarnation of mortal suffering, and as he grew, that translucent skin never quite thickened. I imagined a robust, adventurous child who laughed with abandon, who demanded ice-cream in parks and broke into the gummy vitamins and screamed for spaghetti bolognese when I offered my mother’s fish curry. I imagined that child. In my darkest moments, I longed for him.
I realise now that this boy had required a certain kind of mother, and for some major part of his life, I had been unable to be that mother. Over the years, as it had slowly dawned on me that what was being asked of me was more than what I was giving, I wondered if it was in me, or whether I would have to live for ever with the knowledge that I had fundamentally fallen short. I say this not with guilt or self-pity – all mothers feel guilty and all imagine they have somehow betrayed or let down their children. Whatever the demand is, we are unable to meet it, because fundamentally what is being asked of us is a form of consistent self-abnegation that is almost impossible, trapped in our own subjective bodies as we are.
But despite the real limits of possibility, I could have done, if not better, then different. I could have come out of that hospital after those two months of gothic drama and continued to commit myself to the regime I had become accustomed to. Instead, when my son came home from the hospital, I thought I could treat him like any other baby. I thought I deserved a straightforward child. I put him on a schedule, I fed him at certain intervals, I weaned him when the books told me to. I built expectations and standards and made demands. The expectations were too high; the demands were too great. When it was time for him to move on to solid food, and he refused, I started doing the dance that I have seen other parents do, the bribing, cajoling, punishing, rule-setting dance. I distracted him and he ate. I plugged him into his iPad and, absorbed in the domestic drama of Peppa Pig, he opened his mouth and swallowed.
What I didn’t realise was that he was afraid the whole time. Every time the spoon zoomed towards his little mouth, a flare of panic went up inside him and the fear built up until food was a terrifying, gag-inducing instrument of torture. I tortured him three, four times a day for five years. I did it because I had to, because I didn’t know any better, and because as his mother it was my duty to ensure that my child did not go hungry.
Lucia graduates from St Mary’s about a week before we do. They put her in a synthetic blue gown, and she ambles through the central corridor of the unit. A small speaker plays Dynamite by Taio Cruz. I came to dance, dance, dance, dance. Everyone cheers. Lucia’s father makes a speech, but I am sobbing so keenly that I can hardly make out what he’s saying. Lucia is presented with a certificate, and we share sandwiches from Ben’s Deli. Meghan and I hug, promise to keep in touch.
Later that week, we take our son to a cake shop and order a chocolate cake with raspberry mousse. He asks that “Thank you, St Mary’s!” be written in blue. When we arrive on the unit, Kisha helps to fit his graduation cap.
I have been wondering what to say. What I want to talk about is not just the people we have become, but the people we no longer are. I am no longer the mother who has failed to feed her son. My son is no longer the boy who can’t go to school because he might faint with hunger at the end of the day. The word “miracle” comes to mind, but seems inadequate. I see the next few months unfolding before me, finally being free of the hospital, getting back to my desk, maybe even having an adult conversation in daylight hours when I’m not so tired my teeth ache, and perhaps – can it be possible? – living without that hum of worry, without the question: did he eat today?
Two days after we return to London, my son starts school, and a few weeks after that, he sits in the cafeteria with all the other children. I’ve bought him a flask to keep his pureed lunch warm. The maroon spoon goes with him, along with a suction bowl that sticks to the table. He puts on his school uniform and runs through the school gates every morning and comes home with stories and drawings and stickers for good listening. The colour of his skin changes to a warm gold. A few months later, as the days shorten and we pull our coats and mittens out of storage, I notice when I give him a bath that I can no longer see his ribs. After he goes to bed, my husband and I discuss the sight of his not-ribs and we hold each other and cry and laugh.
On our final day at St Mary’s, I get up in front of Stella and Kisha and the other parents and the therapists in their blue scrubs and I try to say something that captures what has transpired through this hot New York summer. I realise it isn’t just about the eating; it’s also that our time at St Mary’s – a kind of togetherness we haven’t known since those days in the NICU – is as close as I will ever get to understanding what happened in that other long summer five years ago. As Kisha puts my boy into his shiny blue graduation gown, I feel for the first time that the separation between us is over, my own doubts about being the right mother for this child finally put to rest. It isn’t just that he is coming into the world more fully, but also that I can say with confidence, finally, that I deserve him, that I can forgive myself for forcing him into the world before he was ready, and that after all these years, we are finally together, strangers no more.
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