A beautiful creature sent to this earth to show me love id never known before. A gift from god to show me what life is all about. Love. Here my gift was laid in a tiny cot covered in tubes, holes and a thin red line etched into her, evidence that she wasn’t whole. She was broken. Sent to me to fix her. Glued together. She lay in a cot, like a fragile porcelain doll. Not to be touched. Display only, was her notice. I longed to pick that delicate dainty doll up but the instruments keeping her alive whispered to me to not touch. A child longing to play with a loved toy, a starved dog taunted with food, a mother kept from every bond sharing moment with a newborn. No feeding bottles. No nestling her into me. No showing her off to the world. She was my most precious collectible, my fine china, sat in its display cabinet. To look at but not touch. Fragile.
The tubes kept her alive. A machine provided air in and out of her lungs. The tube covering her mouth was stuck on tight with what can only be described as a Hannibal lector mouth guard. Her lips were cracked. Her mouth as dry as the desert and her hair clung to her head unwashed and untouched. She lay like a stone statue, frozen in time. A little sleeping beauty who wouldn’t respond to her true loves first kiss. The morphine kept her pain free but brought sedation. Brought endless days of me seeing her motionless. Never ending days sat in a chair next to her bed, countless bad news and prayers.
She wouldn’t come off the ventilator. The nurses tried to lower the amount of air pumped into her but she couldn’t cope. Every day we had a plan, a plan that never worked out. Everyday I found the strength leaving me and every night I found myself collapsing onto my bed defeated. Morning would come and id walk across the road to the intensive care unit praying id see her awake and breathing on her own. No such thing came. We were given a room in a house over the road from Clarendon Wing at Leeds General infirmary. The Sick Children’s Trust believe families of seriously ill children should be able to stay together, minutes away from their child’s bed during treatment. It was thanks to them we were able to stay so close to our daughter during her darkest days. Eckersley House was our home from home. Just opposite the entrance to the hospital, it had rooms for parents going through the same nightmares. Every day id rush over the road, past the people going in to visit loved ones, expectant mothers, newborn’s carried out in their little car seats with their parents carrying balloons and presents. Every night id walk back over the road away from my daughter on intensive care. I use to hate walking past those expectant mothers, with their nighties on, slippers on, bump poking out, a cig perched in between the womans fingers. Oh how I despised them. Id curse them when id see them a few days later, armed with their healthy child and the huge smiles plastered all over their faces. I hated them for their happiness. Their total lack of awareness of all the illness in the air. The children confined to days, months living in that hospital.
I had never ate a raw egg throughout pregnancy, nevermind smoking 20 a day. I never did a thing wrong. Yet here these women were awarded with a healthy child. Looking back now, I know it could have happened to anyone. Just one of those unlucky few. But was I unlucky? I will never be able to answer that question. I am so happy, grateful and so very thankful I have my daughter but at the same time I always long for her to be healthy. I am told that will never go away, mourning the loss of a healthy child. Like the death of a loved one, that feeling will never ever go. In time however I am told it becomes easier. It certainly didn’t feel bearable as it is now back then.
We stayed like that paused on the television screen for weeks. No change. The repeated trips to and from the hospital morning and night. The canteen food. The chair sitting. Watching other families come and go. Seeing families break down at bad news. The beeping of the machines. The prison that confined us to the nightmare that never stopped. People on social media went about their own lives, the people in Leeds walking to and from work, the drunks staggering across the street, the laughter of children from outside the walls. Life was going on for everyone out of this hell. Family came and went. Consultants swapped over. This is how it went on and on. When one day we were told our littlefoot was coping with the decreased amount of air from the ventilator. Slowly after weeks the amount of air being artificially given to her came to a halt and our daughter could breath on her own. Out came the tube. Off came the horrible Hannibal mask and then came the cuddles.
The first day I held her after weeks of her sitting in that display cabinet was one of the best days of my life. They sat me in the chair next to her bed, very carefully a nurse handed her to me. Without the mass of tubes I could see her beautiful face. It was like being handed my baby for the first time all over again. I held her in my arms, too scared to move in case I tugged on the wires snaking around her. This tiny, battle scared, piece of treasure needed keeping safe. Away from the cruel life that had already tortured her. The love I felt, I couldn’t put into words. My whole world, cradled into my arms, ready to shatter at any moment.
From then on things became a little better. Her morphine gradually decreased, meaning I got to see into those eyes. Having not seen her awake in so long, those eyes hypnotised me with their beauty. Huge pools, that reflected the pain she had endured. I got to cuddle and hold her as much as I wanted. The smell of her skin, the feel of her hands in mine, watching her little chest going up and down on its own. This was my first opportunity to bond with my daughter in what felt like forever. We were taken to a Neurology Ward in LGI to their High dependency unit until Littlefoot was totally off all pain drugs. The neurology ward was to be our home for months. Every child on this ward had something not quite right with their brain. I met other parents who had been there months upon months. I met children confined to their bed, having seizures every few minutes. I saw so many children with different neuro conditions. Some could talk, walk… some lay motionless in bed, in their own beautiful quiet world.
Until now I had never really seen anyone brain-damaged. You see on television all the time stories of cancer patients, alzheimers… Never had I watched my daughter’s life on-screen. I wasn’t used to seeing so much pain and hurt. Id never seen parents crying round a hospital bed, children screaming out in pain, nurses trying their hardest to deal with so many patients and so little resources. When you have a baby, you never get told that instead of this fantastic new life you imagined, you could get ushered through a back door. Pushed so far away from everything you prepared yourself for and into a nightmare. A nightmare you couldn’t wake from no matter how hard you wished, how hard the tears fall and how much you shut yourself away from reality. One day a boy roughly in his teenage years got wheeled onto the ward, strapped into a wheelchair. I watched as the boy made loud screeching sounds that echoed around the anti bacterial smelling corridors. I watched as his head lent to one side, not moving. His limp, lifeless body slumped into a chair that encased him. Imprisoning him. His eyes rolled back into his head, the noise so loud coming from his lips that didn’t quiver. They didn’t move. Like a stone statue. Frozen in time. I didn’t know if I should look, would his family feel I was judging? Giving them pity? I glanced away quickly, not sure of how to act. Later a nurse came in and started chatting to the boy’s mother and I overheard laughter coming from the nurse. I looked over, curious to know what caused the sound of laughter, you so rarely heard in this place. The boys mum told me her son had a thing for the ladies, nurses in fact. I learnt the boy could communicate to people using his eyes. His mum asked her son if he thought I was beautiful and it was then that I went over and saw closely the boys beautiful smile. A smile that could take your breath away. There the statue sat, for everyone to admire. For now I could see the love that emitted from him. It lingered in the air, clutching at you, clawing you to him. His smile, I will never forget. His eyes blinked twice and his mother laughed as she told me I wasn’t his type. I wasn’t a nurse. I began to wonder what my daughter would be like in the future. Would she be able to talk? Could I get her to communicate by some other means like this boy had learnt?
Evie was sent for an in-depth scan of her brain called an angiogram, whilst we found our feet on this new ward. The consultants explained they wanted to look further into our daughters brain to try to find answers as to why she was brain-damaged. She was to be put to sleep so they could perform the scan which would roughly take just under an hour. A special dye would be inserted into her, that would show up her brain vessels so they could get a better picture of what they were dealing with. Yet again I signed the papers for the anesthetic. I walked down to the MRI department and said goodbye to her whilst they inserted the anesthetic into her catheter.
Then came the waiting game. It was like waiting for a long drawn out football match. The results took what seemed like forever. A few days later the neurologists came to tell us things we never dreamed of. My daughter has something no one has ever seen. Scans have been sent to Great Ormond Street, shared with neurologists everywhere and her scans have baffled them all. You see a brain is like a plug, wired up correctly to make your body function. If not wired correctly the brain doesn’t work and it can affect the whole body. In your brain you have millions of vessels that carry oxygen to different parts that help you see, talk, remember, move …. like a plant needs water and sunlight to grow, a brain uses its roots to absorb oxygen so it can develop. Littlefoots roots werent absorbing the oxygen it so badly needed. The plug wasn’t wired correctly resulting in..strokes.
The vessels in my daughter brain hadn’t been made correctly when she was inside me. I hadn’t made her whole. Her vessels were weak, flimsy, missing, dying. Every single day from this news ive always blamed myself. No one can tell me why this happened. Why her brain wasn’t made correctly inside of me and because of this I blame myself, my body. I think back to seeing newborns on television, them screaming, crying, wriggling their little arms and legs. I think back to the time my daughter was born and remember her just laying there motionless. She hardly ever moved, the only movement she would do is arch her back , which we later found out could have been seizures. She hardly ever cried. Hardly ever moved. After the heart news, I had thought it was just down to the hole in her heart taking up all her energy. How wrong I was.
Looking at old photographs you can tell roughly the age, the old crinkled black and white photos, yellowing at the corners. Looking at my daughters brain scan they could tell roughly the age of the damage. These strokes had happened before she was even born and after birth. How? How could a baby have a stroke inside someone? I was being told things I didn’t even think was possible. Why hadn’t I realised? Why hadn’t the midwife or any of the medical profession picked up on this? The truth is even with all the fantastic care we have had from the NHS we have also had errors. How no one picked up that our daughter was severely brain-damaged when she was born, I shall never know, why the midwives never picked up on scans that her brain wasn’t formed correctly will remain unanswered. Could the strokes after birth been prevented if they had known of her brain? So many questions, so little answers.
The neurologists showed us a picture that resembled a puff of white smoke that was our LittleFoots brain vessels. Wisps of smoke, blowing out into tiny, thin lines that dispersed across the image, scattered about here and there. Those wisps of smoke carried vital resources around the brain. Then they showed us a different image, one that was so structured, railway tracks ran all over the little country, letting trains filled with carriages filled with supplies to the different cities. That was the healthy version. Ours looked like tiny dirt tracks scattered about villages, some not even providing access. The difference was shocking. We were told that our daughters little dirt tracks had started to fall into disrepair. Her vessels were dying. The reason why she was brain-damaged. For some reason the vessels were slowing deteriorating and blocking entrances to parts of the brain which was causing them to die. It was then we were told that this condition was life threatening and if the vessels kept on dying then it would also be life limiting.
I though i had overcome the worst news possible when i found out that our daughter may never run in her first sports day race or sing in the school choir. To be told our daughters brain was starved of oxygen, her brain vessels dying and that if it carried on it could mean a shortened life span hit me hard, knocking the breath out of me. I was supposed to watch my daughter grow. I was supposed to learn her all about life, wait for her coming home from school, throwing her backpack down, telling me all about a boy she had started to like in her class, bringing a boyfriend home for the first time, dropping her off at the cinema with friends, watching her graduate. See her find her own path in this world, watch her become anything she wished to be. Watch her walk down the aisle. Have children. Giving me grandchildren that i would cherish dearly. Then as i lay taking my final breath id know she’d be safe. Id know that my life had meaning. Had a purpose. For it was to watch her grow and unknowingly give me every reason to live.
Now i lay in bed dreaming of my daughter’s death. I wake up sometimes in the night crying, feeling the wet tears upon my cheeks, the nightmares feel so real that i wake screaming. The nightmares seem to creep slowly like smoke from a fire downstairs, withering under doors, snaking their way into my head. The ash. So hot. So close. Making it hard to breathe. The smell of smoke clings to me, refusing to go away and then i wake. The image of my daughter laying in a coffin. A tiny box , a tomb under ground detaining her body. So far away from me. A body i cannot touch, hold, kiss. Instead words on a tombstone declaring to everyone that Evie-Lilly lays here. Flowers baring the words Daughter, sat upon a grave, their beauty overshadowed by the sadness. Instead of my daughter watching me grow old, my future was to bury her. Knowing that one day i could walk into her bedroom to wake her up and find her laying there as stiff as a board and as cold as ice.
The consultants talked about an operation to her brain they could do when she was older that could prolong her life. Give us more time with her. More time to cuddle her and show her how much we love her every second of the day until that looming darkness draws nearer. For now she was much to young to under go such big surgery and wouldn’t survive the procedure. All that could be done, was to get her feeding, get her stable, send us to Pinderfields and from there set up our new life. Community nursing team for children with life limiting conditions, set us up with physiotherapy programmes, occupational health, visual impairment nurses, throat specialists, regular heart scans, brain scans to judge how quickly it was deteriorating, specialised teachers trained in global developmental delay…. millions of different professionals. Then came the suggestion of ringing Martin House children’s Hospice for respite care and support.
How had i gone from giving birth to talking about children’s Hospices? A hospice. I imagined a cold, hospital looking building, with its smell of disinfectant mixed with decay. The sounds of children in agony. A morgue. The coldness. The silence. I didn’t want any of that life. I didnt want this future that had been thrust upon us. I wanted to go home. I wanted to show her off to the world. I wanted to take her out in a pram and let the sunlight warm her pale, grey skin. I wanted her to get out of this place, take in fresh air, walk and keep on walking away from this life and into the life i had planned for us. I looked at her in her little hospital cot that i had decorated with teddies, blankets, a cot mobile and toys from home. Toys she couldn’t play with. Teddies she couldnt see. Get well soon cards and balloons from friends and family littered her bed space and i thought GET WELL SOON?! She will never get well! I hated the cards. I hated the balloons that bobbed on the breeze. I hated the sound of laughter outside the walls. I hated everyone with a healthy child. I hated them for their happiness. The jealousy consumed every inch of me. I cursed and i seethed when i saw people complain of having the flu or their child acting up. How i hated the world and everyone in it. How can people complain about such pathetic little things? How could people moan about their rubbish life? I couldnt stand looking at other children. I couldnt watch them talk to their parents, run, laugh …. live.
I thought about home. The cot her dad had built, the mountain of clothes in her wardrobe that hung untouched. The toys that would never be played with, the door swing she’d not be able to sit upright in, the pram gathering dust. The pages of books that my daughter wouldn’t be able to see, the films i had ready for us to snuggle up together to watch … useless. The bottles and formula that would never be used. Id never feed her like other mums. Id never wake to find her sitting up in her cot. Never watch her crawl, reaching for her toys. All that mountain of stuff laid unused at home. A waste of money. A waste of my time. Just Stuff.
I didn’t want to face any of the constant reminders my child wasnt healthy. I suddenly didnt want all the things i had longed for. Get rid of it all. The first few days of knowing about my daughters brain disease were the toughest of my entire life. Even now i go through moments, every few months in which the jealousy overwhelms me. I could be sitting in a cafe, watching children eat. Walking round a park and seeing children running about, swinging, climbing. I walk past, pushing a wheelchair with my daughter who cannot sit on a swing let alone climb. I carry on, the sounds of children’s laughter becoming more muffled. I carry on alone, pushing my daughter who cannot talk to me or communicate at all. Silent. Holding back tears. Alone. Children’s parties are the worst. I remember the very first party we got invited to, how scared i was going, seeing the children in the play area playing. My daughter sat on my knee unable to take part, left out. Trying my hardest to find something in the play area to get involved with. Nothing. Back to the seat. Back to trying to blot out everything that was going on around me. Then came the tea party time. Then came no space at the table for my daughter. No chair we could sit on to feel included. No eating of the food. Sat in a corner on a spare seat. Left out. Back to the car. Back home. Walking up them stairs to the bathroom to silently cry so no one could hear. No one could hear me loose my strength. Then id come downstairs, put on that big happy smile, “Well we tried, we couldn’t of done more. Least we’ve been”. That brave, confident, strong mother who tries so hard to get my daughter included. The mother who keeps her head held high when people stare at my daughter screaming. The mother who holds her tounge when people treat us differently. The mother that waits till she’s away from people to let her tears fall, the mother sat on the bathroom floor cradling her knees, sobbing for eternity.
You carry on. You have to. Every knock back, bad news, i portray myself as some amazing mother who has it all sussed out. Daughter has a heart operation. Its ok now we have fixed her heart. Daughter has severe brain damage. Its ok we’ll constantly work at her to give her the best life possible. Daughter has countless needles filled with blood and fluid taken from her and numerous times she is left on a theatre bed. It’s ok they need the blood to try find out if this is genetic. It’s ok they need to do this operation otherwise my daughter will die. A mother who has had to restrain her daughter, her arms flailing around, whilst doctors try insert catheters. A mother who trys to hold back tears every single time she has to hold her daughter down whilst she fights, the doctors covering her struggling face with an anesthetic mask. Hearing her cry become hoarse. Her screams becoming muffled, all the while singing to her lullabies to try to settle her. Seeing her eyes look at you like you have caused her so much pain. Mummy why are you letting them prod and poke me? Mummy why are you letting them slice me open. Sssssh its ok Littlefoot, Mummy is here. Is that supposed to comfort her?
For i am the mother that let people hurt my daughter. I am the one who has to see and do the most horrible of things for the well-being of my child. I have to leave her on an operation table and walk away. I have to watch the consultants put cameras down her nose, tubes down the back of her throat, watch her choking unable to breath. For i am the mother who always tries her hardest to get my daughter to experience things healthy children can, i am the mother who then goes home and cries her heart out alone after not being able to get involved. The women who hides her tears so no one knows just how upset i am. The women who burys it deep down so she can be strong. I supposed i am strong. I suppose i am an amazing mother to a poorly girl who relays on me for everything. I’m so strong that i didn’t give up when many others would.
We had learnt then that our life would never be what we wanted it to be. Her life wouldnt be like other children’s. We slowly started accepting her fate. We would wait until she was older to perform the operation to prolong her life. We would try get her feeding. But why was that so hard to do?
To be continued ……