Amelia was laid out on the bed; I want to write that she was ‘in’ bed, but that doesn’t sound right. Being ‘in’ bed feels voluntary as if the person had the choice to spend time there and of course, she didn’t choose her fate. She was unconscious laying on her back as if asleep. She was naked except for a large nappy which would have caused her to kick up an awful fuss. I could imagine her protests at this degradation from ‘big girl’ back to toddler. Nothing else adorned her body aside from wires and tubes like a macabre jewellery set.

Three years of hair growth reduced by 50% from the operation the night before. Her usual centre parting split her curling locks of hair and a barren stretch of stubble dotted with marker pen lines and stitches. My first remark to her was that she looked like mummy and daddy combined or like a comic book villain split down the middle. They’d shaved her head to remove half of her skull – this allowed her brain to swell without constriction. It was supposed to help her recover. Red, blue, green wires snaked out from incisions in her scalp and monitored the pressures in her still developing brain. Catheter, feeding tube, drip lines and canulas were dotted along her body for liquids and blood transfusions. My three year old daughter looked like a marionette with cut strings.

She looked like herself, though her mouth was bruised and swollen. Her bracing reaction had caused her to bite through her lips and break her teeth from their sockets. This was a small injury compared to the brain damage she’d suffered, but it was the most affecting. She was known for her smile and the crooked dimple that lingered on only one side of her face. Here, she was broken. A cracked line in a work of art ravaged by tragedy or time. Of course, there was also the breathing tube which crept from the corner of her mouth causing an odd rictus grin. This seemed her only sign of life as the tube misted up, but of course there was a machine breathing for her; pumping her lungs and keeping her going.

All those wires made their way from her bed to an Inter-Cranial Pressure Monitor, or ICP. I’ll admit I laughed when the nurse first told me this because my mind instantly conjured up a picture of the Insane Clown Posse. It’s odd what the brain will do in order to avoid the truth of a situation. This monitor sat there like an overbearing presence which took most of our focus and robbed us from precious seconds of watching her chest rise and fall. Everyone who walked into her small space would gravitate towards the ICP as if it was a barometer declaring the mood of the day. We had a danger number – 35 – and we’d all hold our breath as the figure climbed upwards.

There were good numbers like 20 and 21 which might occur as we told of mice and Gruffalos. 43 and 44 appeared when lab techs wanted to try out a new type of scan on her. They’d covered her eyelids with sticky pads and attached electrodes across her scalp. We equated the rising number with a sense of rising stress in her mind and we’d pace back and forth in the vain hope that the numbers would fall again.

The intensive care ward had a soundtrack to it that comes to me in moments of silence. Among the machines whirring or puffing air you could hear beeps and clicks, the squeak of nurses shoes and an undercurrent of anxious voices or anguished tears. In moments where we weren’t talking we all prayed and hoped that we wouldn’t be the one shedding those tears and overheard by the rest of the ward in the coming days. Various stereos alongside beds played audiobooks or music in an attempt to stimulate or rouse a sick child – a reverse lullaby.

Our own soundtrack was a myriad of voices taking turns to read picture book narratives because Amelia had been passionate about books and stories. Whoever visited, whether close relative or friend, they’d take a turn in reading a tale to her as Jack Johnson crooned his In Between Dreams album; our personal background choice. It was an album Amelia and I listened to at home or in the car. We’d sing about being Better Together or about Banana Pancakes. The latter became our familiar song which we’d sing on lazy mornings when we were the only ones awake in the house. It was my hope that her hearing those lyrics would stir something within her and at times when it was just me and her on the ward I’d sing it aloud in my awful strangle/warble, which would usually make her laugh. It was a hopeful comfort for her and us alike.

But let’s back up a bit and talk about my first reaction to seeing her like this; surrounded by children dying and adults crying…

I remember when I first walked onto the ward. Everyone’s eyes turn to you with a mournful look of welcome, as if accepting you into some morbid gang or club. Amelia was placed with a wall on one side and on the other was a two year old who had caught an illness and developed complications. [The two year old made a recovery. His parents bought Amelia a small metal angel to put under her hospital mattress. They’d bought one for their son and believed it would help. The camaraderie of disintegrating parents is a wonderfully odd thing]

At first I couldn’t look directly at her. But I couldn’t look elsewhere either, for fear that I’d meet the eyes of those other parents and relatives. I’d been waiting in a typical hospital waiting room for hours while the best brain surgeons in the UK had operated on her. I was tired and drained, being held up by adrenaline and anger. I stood at the foot of her bed and couldn’t move. My mind flashed back to earlier that day when I’d been dropped off at work and I leaned into the backseat of the car to kiss her goodbye. My mind groped for words that never came, but I was thankfully saved by my mum who walked in behind me and began talking to the nurses.

I stood there in the remnants of my working suit, which would later become my mourning suit. It was as if I’d been pulled from my reality and placed in an alien environment. Only hours before I’d been laughing and joking with customers. My comfortable world of selling beds to the public was traded for selling the idea of hope to my loved ones. The concept of my working world evaporated and was replaced with bed sore prevention and absorbing information about brain scans and X-rays delivered by grim faced doctors.

I couldn’t believe I was looking at my child. Here was a little girl who would walk into someone’s house and remove all of her clothes except her knickers and vest as if she was stamping out her authority or marking a territory. I was used to seeing her singing, dancing or chattering, but now her body was stilled. She was a constant turning cog that kept me moving but now she’d stopped and my brain couldn’t process the situation. I couldn’t grasp that my daughter, who I’d cared for, could be in such a state. It was my job to protect her and guide her, but here she was on her own.

But, you need to know how we ended up here. We need to go back further…


2 thoughts on “Remembering

  1. Reading this was a punch to the gut. It’s so sad that this happened. The way you’ve written it is so raw and heartbreaking, can’t possibly imagine how you must’ve felt and must be feeling.. xxxx


  2. Dan and Sarah, what you’ve both been through is something that we all imagine happens to everyone else – not your little girl. There are no words to describe the ravaging grief that you’ve no idea how long lasts or should last. Please don’t feel like you can never laugh or smile again, don’t feel guilty for living. Your beautiful girl would be sad to see her daddy so broken inside. Grief is a process that has no time frame, you have to go through it and feel it to heal from it. You can heal from it and you will. You have to believe that. If either of you would line to try reiki it can help greatly with the emotional healing process. I’d be happy to treat you. Sending you huge amounts of love. ❤❤


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