My son was born twice: first on a warm evening, at the end of June in a busy east London hospital, and again five years later in a small children's care home in Queens, New York.
I was six and a half months old when I found out that I had pre-eclampsia. On the day he met, I had done a series of unsuccessful things: buying for bread, preparing a story, calling my parents in Bangladesh. In the afternoon, my midwife came over to my usual visit. She examined my blood pressure and saw that she was high, so she asked me to peep a stick. When I returned to her, she told me to pack packets.
It took us 10 minutes to go to Homerton Hospital, where the relatively small doctor told me that medicine for pre-eclampsia was a delivery. I had a problem understanding how to deliver a 10 week early baby as a cure, but I didn't get time to argue. They sent me out to work on her surgery, a needle on my back, big socks on my feet. I slack the agenda and my husband shook my head in his arms. I didn't feel pain, just pulling and hitting and hitting, as if someone had tied me down and putting me out. Then, you can silence on an hour's oath, but I have to be a few minutes, after which I heard soft call. A nurse gave me a brief insight into the fragile form of my son before he sent him away to the intensive care unit. I did not know then that I would not see him again for three days, that he would be in hospital for two months, and when he let him out he refused to eat for five years.
WHe was transferred to St Mary's Hospital for children in New York on Monday after a tour of seven hours from London. For weeks we have been repeating the following lines: “Where are we going? '' Going to school! '' Who is going to feed when we come back? '' Me! I'm going to give me food! ”
We've been recording the things we learned for eating: sandwiches, cheese, French turkey, puddings. We have counted the days. My husband and I have recycled our house and take our credit cards largely on tickets, childcare for our youngest daughter, our house we had. T rented from an underground channel from Long Island. And here we are.
Everything is just as I was thinking – glass and steel, high-pitched roofs, expensive furnishings – except the cupboard. I am used to hospitals in London and Dhaka, where it doesn't matter when you appear, it is always difficult to get into a waiting room in the waiting room. In St Mary, the blue green chairs are empty; only the panoramic views over Little Neck Bay are seen but with a small number of nurses who travel until they break. Because I have included it in the little part of this story, I notice the only silence but do not stop for being surprised. In any case, our unit, the Cindy & Tod Johnson, is for Pediatric Disease down the stairs and abuzz. The main location where food producers work between sessions, chatroulette and keyboard sounds, and in the corridors, parents take the children to their sessions in medicine rooms with high furniture, televisions and small kitchens.
Situated after we arrive, we meet Stella Yusupova, the program leader. I have been writing with Stella for more than a year now, and she has been very effective using everything from housing to day care. Stella takes us to the classroom, where we see our son through videos while his expert works with him.
“It's about to fight,” she tells us. “Sometimes it is difficult to watch.”
“We hope you do that,” I say, I want it to be like me. “We try everything. ”
We have. We have been advising GPs, nutritionists, teachers, psychologists, speech and language therapists, home owners. We have all had some idea of “it will be better”. At Great Ormond Street, the tallest children's hospital in London, they told us there was not much that they could do, as long as he was hungry.
He is not hungry. We have found one food that can accompany it: baby's porridge, a mixture of oats and milk milk. We mix it with formula, calorie development and powder vitamins. When we are lucky, it allows us to compare protein and vegetables but only if it changes the taste, texture or smell of a bowl.
Every day for the best part of five years, it is home to warm milk and heating. For most of five years we named him with an iPad, thinking about his mouth putting in, and putting the spoon in his lips. For five years we were surprised by all the dinners, saying the food he had never eaten was sufficient, that we would have to wake up the next day and start again. For five years their worry left us away, as we thought it would be a good day today, if he ate the porridge or taken away, or would a week long famine strike attack. t For these years our parent has come round food. We only left the house for a while. We had never eaten food together. We have looked at other children with surprise and wonder.
Specialist nutritional clinics in London, or anywhere in the UK, are not able to help. After searching wildly, going out to friends, sending a hard message on online forums, we were eventually told about St Mary. We went through the assessment, hoping that something would have changed and that the whole journey would be complete before going off the waiting list. And of course it wasn't, so we got that plane and we walked through those glass doors, dreaming of sandwiches.
Mef I thought, in my life before, what my first memory has been thinking about, I would not have been separated from my child. I was warned about the sleep deprivation, the tiredness, the bad damage that could have caused my body, but I didn't think I was alone. One day I was buying for strollers, and the next thing that was thrown into my dark world before me, where my child was not alone. My belly was wiped out, my body separated from each other and still the child that was pulling me was not from the inside of my arms.
At first, the catheter was awake to my hospital bed. Then that was my blood pressure. They can't go down. My husband closed out of the delivery room to the childcare unit today (NICU). For several hours a day he cared for kangaroo, holding our son against his bare breasts. Later I would see pictures of both of them, my son's face and his little hands touching his father. Those first few precious days would be tightened to each other, a secret secret that I would always stand.
On the third day, following a hot argument with a midwife, I was granted permission to travel to a NICU in a wheelchair that would not be accessed exclusively. I was taken back through the hospital version into a room full of devices, clipping, humbling and humbling. When I was finally over on it, a plastic drum was shifting to us. A hip covered in half his body, the remaining bare but on a thin sheet of flying over his skin, the lantern was inserted inside the last few weeks of pregnancy t . I was seeing something I couldn't see; it was all thought that he would meet his body but away from my sight.
I had to make milk. Currently the child was on IV plant, but harness was soon needed. At first I had to undo the bones with my hands. I had congestion and pressure. The thick yellow tickets came out – more like a phlegm rather than milk – I had to catch them on the top of a burn. For days I did not do enough, and formulated it on a formula, that it was not suffering. They would guess every Wednesday and Sunday afternoon: a decision. Night after night, I had a knee on the side of my hospital bed and I managed myself with my work, claiming with my body to work with me.
A thin plastic tube poured into his nose and then go down through the vein and into his stomach. To feed it, they poured small amounts of milk into the tube and allowed gravity to draw in the body. Before each meal they would pick out the aspirate in their stomach. Empty stomach was an excellent thing. A stomach full of milk from the last animal meant that it was not feeding properly. If milk came out, there was a risk of infectious infection entering nervous necrotitis.
For two weeks, while the doctors were working to bring down my blood pressure, I lived on my maternity ward. On the other side of the thin curtains that he shared, I heard the sound of the women at home immediately after they had given birth. I heard their children lamenting. I got blood helmets in the shower drain. I heard their families joined together and I saw the blue and pink balloons plucking in the roof. In the morning, the nurses put out grain boxes and a jug of milk on threes and I met the women and babies I had heard all night, the women speeding on slippery feet, keeping them the abdomens part. Who knew their secret secret wounds? My own injury had gone through it. In addition to anti -pertensives, diuretics, morphine, I have been given a course of antibiotics. After a day or two, the mothers and babies went home, and newcomers came. I spent hours with my child's sleep- ing, often just looking at the plasticis and looking at raising and falling talons.
As far as I can remember, I am afraid I would never have children. I wasn't at all to be in crisis, just that I was convinced I couldn't. I didn't understand until I was long after that I got this fright from my own mother, who had been pregnant with me when she was 21 and now married. struggles with inactivity for more than ten years. Recently on a trip to Paris, walking on the Rue Du Commerce, I asked my mother how he wanted to make a halfway through the world when my father was born t his first work with the DA. I thought she might be bothered about French people, maybe I even told me an old story about how they dealt with their dogs – like kings – but instead of that. she told me that she was very sad all the time, for as the years went on, she had to face her daughter. There may not be more children. I think of it now, pushing my striped red and white stroller through a park in Paris, a cold wind rubbing tears.
In the end, I wasn't scared. There were many unpredictions, senior dentists with heart beat, a trip to the hospital to the last time of pregnancy and waited for physically away. A doctor told me there was enough of what is known as “natural natural cells”, akin to a joke (he didn't); the next time I got heavy, he put me on heavy doses of steroid. For 12 weeks, their hair fell out and I was in an enduring depression condition, until finally, around the three-month mark, I began to feel better, and the riots of things that went wrong started. through. I accepted that, after all, I had found an undesirable pregnancy – even a kind of moral belief, some karmic volume – and that I could now be a member other ladies traveling through glass.
SI supply a piece of paper which contains the rules and regulations of St Mary's life. We have to go to hospital at 8am every morning. We'll have four cures for us every day, with a 90 minute break between the two places. She shows the different areas we can use to cover the time: playroom, outdoor grassland, two cafeterias, a small library. At 2.30pm we will be sent home. I get strict guidance on how and when to feed my son for the rest of the day. I'll give notes of all the foods I eat, record all the grams it eats and every millimeter it drinks. I am getting a card of images of different poo. I will write down the type that came out and what it was like.
Stella will welcome our pharmacist Kisha Anderson. Kisha is tall with long, dark shoes and a deep, soft voice. I love her right away. She immediately includes three things that are going to change our son's life. First, the maroon spoon. It appears that the silicone spoons we used are sitting too deep and narrow; the maroon spoon is very thin, encouraging it to open widely and allow the food to get into its mouth easily. Then Kisha puts a foam on the spoon, making it easier for him to keep it. And then she spends time. All foods last for 20 minutes.
We use an applied analysis of the type of treatment they use to eat our son, and this includes an order of rules setting out with positive reinforcement. Kisha shows him a series of toys, and wants him to choose. An iPad or a toy train? iPad. iPad or toy car? iPad. IPad number or action? iPad. She writes notes. The athlete is the iPad, the official cap.
Kisha gives him the chance to look at 10 seconds of the iPad, and then she said “my turn” and he will take it away. She casts the top of the marble spoon in a tub of yoghurt and slowly lays it in his mouth. It is puckers, but does not use it. Immediately, she gives him the iPad again. It takes 10 seconds of Despicable Me 3, laughing at a banana. Again it takes the tip of the spoon into the yoghurt. “Open your mouth,” she said to him. I have said these words a thousand times. He shares his bills and shows quickly what she's a yoghurt. Again, the iPad. She writes notes. Third time, he refuses. “I don't like yoghurt,” he says. “Take your bite,” she said. He is shaking his head. “Take your bite,” she recites.
On the sixth or seventh journey, my son will open his mouth and the pink yoghurt will disappear. Kisha beams. 'Wow!' She let it go, 'I am horrified! 'So she let it fall off from the throne. After ten seconds of iPad, he does it again. And again. It imports more and more spoons into the yoghurt loft. At first he can just get the very tip of the spoon into his mouth – the practice that all food was served – but Kisha wants him to open his mouth and clean the spoon. He won't be with his iPad until he does. It goes almost.
In the bedroom, my husband and I look at each other and shake my head. This is the first time that it has eaten anything that is not oatmeal, that's not beige, the first time it has given a spoon to anything. Kisha is very enthusiastic about every time he takes food. It is impassive when it refuses. “Take your bite,” she recites. When he lights his arms, she says “quiet hands”. It is not disappointing, there is no anger without tiredness. “Take your bite,” she said. It bites it. He gets his spoon.
That is the same day. We send home in panic, unbelief.
Tthe nurses on the maternity ward were well aware that I wanted a room. “Give me out of the ward,” I said. “I can't listen to the children anymore.” Finally, they can look. In the warm heat of the night or the first pink pink of first light, I was thankful that I was able to behave behind a closed door.
NICU at level 3 at Homerton, is one of the best in the UK. They spend the poorest and smallest babies in two wards at the back of the unit. Once it started to take control, our son was moved to a smaller room of independence. But still, there were strict rules to follow. I was not allowed to bring it in and out of the big cauldron. I was not allowed to give a nurse, even if he opened, and closed his mouth as a fish. Every time I went near it, I had to wash my hands and bring them down with a cleaner. As well as my spouse and me, no one was allowed to speak to him. When people came to visit, most of them would go through the room window he shared with the other seven babies. There were nurses who were right and kind, and of the nurses who were nice from the work, but I had to give them up too, because when I was not there, they did every mother.
When my husband had to return to work, friends came to keep me doing a company. I asked them to give them a cake. My friend Bee came with little chocolate muffins. “Poo cupcakes!” She said. “You don't have to shout. “I didn't let my wound be wounded because I sat all the day at the back behind the high heights. I carried out a number of painless drugs. In the hospital grounds, I sometimes stopped on the summer square and showed photos to the photographer. There he was two-thirds of his clothes. The tube of the nose. Entering his ankle. It was so small, tired and so appealing, it was hard to believe it would be like those other children in the maternity ward.
There are lots of people that I didn't know then. I didn't know that we would all go home. In the first year, I would have escaped it when the books said it was good enough, because it had been seven months from the people who were traveling out, because I was sick and tired and I was sick. write books again. We took him back to hospital several times; that there would be two pneumonia bombs, every night almost excited, the immigrants and the eyes and the people who eat. Then he would look at a piece of bread, the first time and the last time that would do that, and I thought for that piece of piece every day, for a period of four and a half years.
In the second year, I started a novel, and the novel would say about a child who was missing. In the third year, I would be looking for a trauma organist. He asked me to go back to that time in hospital when I entered the working room, and I told him to move my story. back and forth. After 10 sessions, I'd tell him I was feeling better, and that we wouldn't meet again. The next developer, Jill, would be a surprise. After a year of weekly sessions, I would tell her about the misconceptions, and suggested, sensibly that the lack of other babies may be very stressful for those who have survived. Maybe you should do something with the refusal to eat?
In the fourth year, I would give birth to a small child. A good Sri Lankan doctor would provide her with a member of caesarean – too small, too small, but importantly, not so early, small as small. After my delivery, my bed would be rolled into NICU and the child would be pressed over my breast. She would look into my eyes and we would recognize each other and a little bit of me would do it altogether.
And I didn't know, in the first days of his life, that my son would not have gone into the world but with a heart enough that his refusal would eat us, sometimes when I asked him, ' Are you hungry, baby? "He answered," Mum, always hungry, "and I broke all parts of me open again.
I didn't know this. I was with him all the time and I didn't reach him. I arrived at night and found that they had made the tape that made the birch tower to stand with his cheeks. One day he was decorated with bears, the next thing that was with butterflies. The blanket he was wearing was different. Someone in gloves had been lifted out, he changed his frame. Someone else in me. Our staff would need to communicate with the nurse, everything that has been overlap, the devices keep secret until it was put in the front t my breasts were pushed back into the watchmen who took birth in his life. Often when I was keeping it, he cried, lamenting, thin, useless. I was hurting it, putting the needle up, standing against the tube of the nose. Soon, I asked them to return to the brooch, and then I stood there in my open shirt without use.
In my hours of advice to get rid of my son's early birth disaster, it is not the time I return to it again and again when it is drawn from my body – I don't remember – but, as I went away, I left it in the NICU when I finally came out from hospital. Despite my complaints, I had to go home when my child stayed behind. My husband was packing the bag and I named the taxi. I was standing in front of the girlfriend and my legs were positioned with the floor linoleum as I thought about how soft my bed would be, so warm, that I would live in rooms that wash laundry rather than bleach. I was abandoning it to the vibration equipment, the IV that always caused his leg to be finely pleaded. I had been at night, I saw the way they sometimes used to let the babies cry for long. The effective nurses, their favorite jobs, but had to show their love. So many small babies: it was impossible to keep them all.
ESt Mary's Church, where the rareest deaths show themselves, our son is irregular. They mention it as “fully informed”; there is no medical issue or learning problem that this may have caused uptake of food. He had never been on a tracheostomy, or a GI tube. He is not experienced. The two months in the NICU are unique in its history. All other children who go through the unit in the six-week period we are experiencing have made a sort of medical or mediation problem that brought food easily or impossible.
He speaks, sings, laughs and jokes through his sessions with Kisha. “I'm going to do this Cheerio out of sight,” he says. He made him put it in his mouth and then threw it on the floor very quickly. The Kisha phrase does not change. “Take your bite,” she said, in a monotone unfamiliar and comfortable. In the first week, it samples yoghurt, smoked eggs, and oatmeal, all of which are mixed to take easy action.
The 90 minutes or so between the long sessions is a must for me, and I have to find ways to entertain us. We circulate empty public places in hospital, going from the big lobby to the open balcony. Sometimes we can see a nurse pushing a baby in a wheelchair or encouraging steps in a pedestrian. In the playroom, my son makes two friends: Lucia, a fair little child, and Larry, a four-year-old boy. Larry often meets him; it starts to escape, but at last he gets used to the tidy times. Larry is very unworking and refuses to eat anything except peanut butter and puffins, these rushes give to a baby when they first start on a hard meal. Kisha mentions these as dissolvables. When the time comes for my son to start on a solid, this is what he would try for the first time.
Of the many children we meet in the six weeks there are only one in whole sentences. Lucia is not one, though she is very knowledgeable and enjoyable and likes to dream of the church bells. Her father is a minister, and her mother, Meghan, affects me as something of a saint. She tells me, in a way that's just out, that Lucia's disease called Noonan syndrome, which affects everything from growing to bone. The reason for the reconstruction of the petite frame of Lucia is Noonan, even her reconstruction. They are here because Lucia has refused to take food from anyone except Meghan. Three years now, Meghan has been alone for his daughter for a few hours. Our three families come together between sessions; Meghan is full of stories all the time, and it appears that Play Larry of Play-Doh has a striking unlimited version of her bag, and in our time together we do a bit of a tribe.
Slowly, my boy and I create a routine. The receptionist, Elaine, welcomes us in the morning. We're going down the stairs and we have a pee. He learns to wash his hands in a sink which is swamped by wave on his arm. I leave it in the medical room and then I go through to the bedroom. I put on the headphones. I'll be writing notes. The session lasts 20 minutes and then I am trying to commend it. We will wait again. “It's a pee on the top of your pee,” he says. Running around the playground. Making stories about the koi in the fish pit. Another session. Headphones, notes. Kisha tries to stop the iPad, leaving more and more time between awards. Lunch: we debate whether you are going to the cafeteria back or the cafeteria back. We put money into the vending machine and Butter Nutter comes out.
Bidh na banaltraman ann an scrubs a ’tòiseachadh ag aithneachadh sinn, a’ dùsgadh nuair a thig sinn seachad. Ann an àm nuair a chì mi teaghlach, an leanabh ann an cathair-cuibhle, pàrantan a ’gluasad tro na lòin aca. Tha boireannach Àisianach ann a bhios a ’cumail a mac fhàsmhor na h-armachd gach feasgar, lìon de thiùbaichean air a shiabadh tarsainn a chuirp mar a bhios i a’ tarraing às an torso aige. Pee a-rithist. Bidh Lucia a ’dùsgadh bho a h-oidhche san fheasgar agus bidh sinn a’ dèanamh beagan cluiche le stòr reòta reòthte. Seisean mu dheireadh: tha e sgìth, tha e ag iarraidh a dhol dhachaigh. Mu dheireadh, bidh sinn air ar tilgeil a-steach don fhùirneis an fheasgair, latha eile crìochnaichte, calaraidhean air an tomhas agus air an ithe, biadh ùr, glè bheag de mhìorbhailean beathachaidh, a ’ruith a-steach do chorp mo mhic.
Tbidh am bus 236 a ’dol bho Finsbury Park gu Homerton ann an taobh an ear Lunnainn. Air na làithean san Iuchar agus san Lùnastal den bhliadhna sin, thog e mi air a shlighe agus chuir e mi a-steach air beulaibh an aonaid mhàthaireil. Bha e na shamhradh de fhuaim teas agus bha mi air a ’bhus sin madainn gach latha, a’ giùlan fuarachadh bainne bha mi air a phumpadh tron oidhche. Nuair a ràinig mi, dh ’rinn mi sganadh sa bhad air a’ chairt-innse a chuir liosta de bheathachadh mo mhic, na h-atharrachaidhean a rinn e leis a ’chlò, a’ mheilearan ann an stamag. Cha robh e tinn, ach bha e a ’fàs gu math slaodach. Air a bhreith aig dìreach beagan air kilo, bha aige ri 1.7kg a ruighinn mus fhaodadh iad a leigeil ma sgaoil. Thug an 700g sin dà mhìos de chuairtean-bus, a ’dol dhachaigh san fheasgar seachad air London Fields, fàileadh barbecues agus dol fodha na grèine agus bha daoine air an dòigh leis na h-oidhcheannan blàth, blàth.
Coltach ri mòran de na màthraichean eile, bhithinn a ’tighinn dhan ospadal aig 8m nuair a thoisich a’ bhanaltram latha a gluasad. Nuair a rinn na dotairean na cuairtean aca aig 10m, chuir mi dragh orra le bhith a ’faighneachd cus cheistean, a’ tighinn gu crìch an-còmhnaidh leis an aon rud a dh ’fhalbh às mo chuimhne: cuin a bhiodh an leanabh air a leigeil mu sgaoil? (Bha mi an-còmhnaidh a ’faighinn an aon fhreagairt: nuair a tha e deiseil.)
Ràinig am fear agam aig àm-lòin le biadh agus chaidh iarraidh orm a dhol dhachaigh, ach is ann ainneamh a rinn mi, agus anns na feasgaran b'fheudar dhomh mo thilgeil air falbh nuair a ghabh a ’bhanaltram oidhche thairis. Chuir mi na chluais anns a ’chluais nach robh mi a’ còrdadh ri coimhead na banaltraim, agus an uairsin, aig meadhan-oidhche, dhùisg mi e agus thug e air an ospadal faighneachd ciamar a bha an oidhche a ’dol, an robh naidheachd sam bith ann, an robh am pàiste ann agus thug e leis am biadh mu dheireadh aige, dè an teòthachd a bh 'aige? Chaidh an duine agam a dh'obair tràth sa mhadainn agus glè thric dh'fhuirich e còmhla ris an leanabh anmoch air an oidhche. Bha mi air leth taingeil dha aon latha, chuir e iongnadh orm an ath latha. Lean seo gu h-iomlan, a ’toirt cead dhomh a bhith a’ gabhail a-steach an àite gu lèir, gus innse dhomh fhèin an neach-fulaing agus an neach a rinn an tachartas uabhasach seo, a ’faighneachd dha ceistean nach eil comas aige freagairt. An guir, an tiùb ann an sròn a ’mhic againn, am fontanelle fialaidh a’ chrùn – b ’iad seo na h-aon nithean a leig mi leam fhìn a bhith faiceallach.
Bha na seachdainean sin san ospadal far an robh corp agam a bha briste ach a ’slànachadh, agus dara corp, eile nach robh gu tur eadar-dhealaichte bhuamsa, a bha a’ fuireach ann am bogsa plastaig a bha a ’coimhead nach robh gu leòr coltach ri ciste – bha mi coltach ri càil a bh’ agam riamh no fios a bhith againn bhon uair sin. Uaireannan, faisg air a ’chrìoch nuair a bha cùisean seasmhach agus mo mhac a’ faighinn cuideam agus ag ionnsachadh a bhith ag ithe, bhithinn a ’coiseachd air na sràidean – na h-amannan ainneamh a thug mi cead dhomh fhèin an t-ospadal fhàgail – a’ faireachdainn àrd seach nach robh mo phàiste marbh agus nach do chaochail e, oir air dòigh air choireigin bha mi air falbh le bhith uamhasach aig torrachas. Aig amannan eile bha mi brònach ri mo dhroch smior, seòrsa de thruas nach eil mi riamh air a shreap, mar gum biodh gràinne beag de dhorchadas air mo chuir orm a-riamh, a ’blàth gu socair na mo chnàmhan eadhon mar a chaidh mo leanabh a shaoradh bhon ospadal agus a ’dol a-mach don t-saoghal airson na rudan a tha pàistean a’ dol air adhart a dhèanamh.
Agus nuair a dh ’fhalbh sinn mu dheireadh thall a’ dol dhachaigh, dà mhìos an dèidh sin, chaill mi an t-ospadal, na h-innealan gleusaidh a dh'innis dhomh airson a bhith cinnteach gun robh e a ’tarraing anail, na banaltraman a tharraing loidhne eadar leigheas agus màthair. Chaill mi an seòmar dorcha far an do dh'innis mi bainne, an cabadaich leis na màthraichean eile le sligean eile, toileachas lìonadh botail an dèidh botal le manna. Cha mhòr nach do chaill mi na h-àireamhan a thug cunntas air an adhartas a rinn mi, agus mar sin m 'e. Cha deach aithris a h-uile càil às deidh sin – na mìosan agus na bliadhnaichean nuair a bha mi an-còmhnaidh a ’faighinn air mo phàiste ithe, seach gun deach a chraiceann bho pinc gu porcelain gu fior ghlasach, thachair seo uile gun sgafallachd an ospadail ospadail sin; Chan e, chaidh a chuir air falach air cùl ballaichean na dachaigh againn far an robh aon chorp a ’fuaigheal e fhèin fhad’ sa bha an tè eile a ’strì gus an solas a lorg.
Mus deach a sgaoileadh, thug iad a-mach an tiùb à sròn a ’mhic againn agus chunnaic sinn a h-uile duine airson a’ chiad uair. Bha an t-aodach as lugha a bh ’ann am bùthan nam pàistean ro mhòr, ach cha robh a ghruaidhean a-nis na bhoglach, agus bha fiù tartan pinc beag air a chraiceann. Thug iad deuchainn cluais dha, bha e air a chothromachadh aon turas mu dheireadh, agus thuirt e gum faodadh sinn a thoirt dhachaigh aon uair is gun do chuir mi oidhche slàn còmhla ris san ospadal. Bha sinn air ar gluasad gu seòmar a trì, seòmar-cadail far an roinneadh sinn ceart-cheàrnach fànais air cùlaibh cùrtair gorm eile. Cha robh cead aig an duine agam fuireach; airson a ’chiad turas, cha robh ann ach an dithis againn. Thog mi e bhon chrios plastaig soilleir a chuir iad a-steach leis an leabaidh agam, thug iad sùil air gu robh e a ’tarraing a-mach, chuir e fhèin sìos e air ais airson mionaid no dhà, chuir e air dòigh e agus fear eile, agus thog e a-rithist e agus thòisich e a-rithist. . Airson a ’chiad turas ann an seachdainnean cha robh mi a’ phumpadh ann am meadhan na h-oidhche, agus bha am bainne ag ithe tro mo lèine-T agus a ’ceangal timcheall meur-lann mo dhèideagan. Fad na h-oidhche dh ’fhèadaich mi mo làmh thairis air a bhroilleach bheag, chuir mi mo mheur fodha fo a shròin gus a bhith a’ faireachdainn na teas beag blàth a bha ag innse dhomh gun robh e a ’tarraing anail. Chaidil duine againn.
An ath latha, chaidh sinn dhachaigh.
Rugadh an teaghlach beag againn mu dheireadh. Bha sinn a ’cadal ri chèile air nithean bog, suaicheantais agus cluasagan agus plaideachan. Chuir mi uabhas air agus chuir mi uabhas air. Dh ’fhalbh solais sholais os cionn an ospadail, agus dh'fhàg fàileadh cungaidh-leigheis agus stuth-glanaidh a chraiceann agus a chuid aodaich. Bha e furasta an gleoc ath-shuidheachadh, gus a ghairm an latha neoni, mar gum biodh sinn air leanabh a thoirt dhachaigh bhon ospadal mar a h-uile duine eile. Sa mhadainn cha robh duine ann airson mo chuideachadh no innse dhomh dè bu chòir dhomh a dhèanamh. A h-uile h-oidhche a chaidh seachad, bha an t-ospadal nas fhaide air falbh. Cha robh mi air notaichean sam bith a ghabhail, a bhith a ’clàradh rud sam bith ach beagan dhealbhan dhomh fhèin a’ coimhead beag agus glas. Shluig mi mo chungaidh bruthadh-fala agus dh'fheuch mi a h-uile rud a thoirt air falbh bhuam.
Ach bha geata beag air a thighinn suas eadar sinne. Bha mi a ’faireachdainn gu robh ceangal domhainn agam, bha mi a’ faireachdainn gu robh e meallta de Euphoria, na rudan a bha ro mhòr airson greim fhaighinn air a ’ghràdh. Ach bha mi cuideachd fo amharas gu robh pàirtean dheth nach b ’urrainn dhomh a ruigsinn. Chunnaic mi an dòigh anns an robh e còmhla ri athair, rudeigin furasta mun cheangal aca, mar gum biodh fios air a bhith aca o chionn fhada. 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 classified 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 classrooms 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.
Ohn 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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