NEVERLAND

Our mother had always referred to her as our angel, but in passing from our world to the next, she looked anything but heavenly.

Her head was huge on her skeletal body, eyes rolling. Her wrists bent at that telltale angle without their splints to keep them straight. The dark hair which was once a luscious inky mane against the green enamel of our bathtub when we were little. Now brittle and greying as a result of her medications.

Shamefully, I had not seen my sister in years. As I stood at the foot of her bed, rigid with fear and unable to swallow, I noticed this other, final indignity. Her robe had come apart, showing a flash of thick pubic hair. It could not have seemed more inconsistent with the rest of her. Wendy was fading away before us, it was literally her final hour. But this hair, like stubborn weeds, a dark thatch to remind me that she was a woman and not a rag doll. Despite my best efforts to forget her while she lived, I will never forget how she died.

Children are always afraid of things that they do not understand, and parents both create this fear and save them from it by keeping secrets. I did not at all understand what had happened to my sister at the time, and I only do now through my mother’s accounts. We were so young that the timeline of events swim before me when I try to pack myself back inside my smaller self. I do not remember her traumatic birth, do not remember if I visited her little plastic terrarium in those early months. Yet the photographs of my father’s wedding band around her tiny premature wrist are seared into me. As is the story I overheard of my mother haemorrhaging in our kitchen.

“There was blood lapping the walls, like a wave.” She’d said quietly to a friend.

When I was older, Mum told me the doctor had fisted her uterus brutally to dislodge debris. He had also ignored her wishes not to resuscitate the baby. I have no idea how my mother, at the time several years younger than I am now, survived all that terror.

They’d named her Wendy, for Peter Pan. She had not been expected to live. Being born 12 weeks premature in the mid-eighties was very precarious indeed. But two years later, there she was in the local paper. A chubby cheeked toddler next to the photograph of her fetal self, wearing Dad’s ring as a bracelet. Perhaps readers were able to smile as they read the article. It would have sounded like a very happy ending if that had been the conclusion. Young couple with two little girls grow into a normal happy family. What actually happened is that Wendy was later diagnosed with something horrible and rare called Rett’s syndrome. It ripped us all apart.

To be fair, I do have the haziest recollections of certain regular sister memories. Being older, I was jealous of her stealing the limelight. My favourite colour was pink. I fumed when we were dressed in matching pink and white striped pinafores. Mine is pink, but hers is white! I howled in defiance. We would squabble in the kitchen, scratching and hitting each other with plastic utensils Mum had deemed safe enough for us to play with. We would sit in the green bathtub with our toys. She always loved water. Years later, her expression would change when the carers carried her in the pool. It must have felt wonderful for her to be weightless and floating, escaping the prison of a rigid body. Her jaw would relax, she would blink and her eyes would suddenly be able to focus again. She would gasp and smile and humanity would return to her features.

I do not remember losing my chubby toddler sister to the degenerative syndrome either. She slipped away over time and my parents struggled with the explanation to a five-year-old me. Our mother told me that she just knew one day, when Wendy was almost three. Long before any diagnosis.

She’d carried my sister as she screamed and screamed without abating. Something is wrong with my child. The realisation settling around her that she had not left behind the nightmare of her younger daughter’s birth.

The Queensland Government had, in those days, residential care for the severely disabled.

Intensive round the clock care for someone who doesn’t just have major physical disabilities, but also cannot verbalise when something is wrong, is nothing short of essential. In order to care for a person so afflicted, at least one other person must completely sacrifice themselves. My mother had my brother and I to care for too. She was judged by a witless moral army, but made the best decision for us all by having Wendy admitted into the Helwyn Centre. A brick building discreetly tucked away in the affluent suburb of Ashgrove, albeit on a main road. She visited Wendy every single day. She spooned her dinner, spoke and sang to her, brought her endless toys and learning aids to spark her interest, befriended all of the nurses to keep them on side. Once, when I was around 8 years old, Professor Rett himself gave a lecture on the mysterious syndrome in Belgium. My mother flew across the world to attend, even though money was tight. At one point, our whole family was subjected to genetic testing at the Royal Brisbane and Women’s Hospital. Vials and vials of blood until I screamed and cried so much that the whole thing was postponed. Blood tests remain a phobia for me still, one I doubt I will ever conquer.

My mother was always searching for answers. I feel she was always battling guilt. I know with every fibre of my being that she could not possibly have done a better job.  

In stark comparison to my selfless mother, I was not as compassionate a sibling as I could have been. Helwyn was kind of a scary place and I remember it through the eyes of a child, which probably made it doubly so.

Moans of discomfort and frustration echoed down the corridors like the language of whales. Faces disfigured with palsy stared listless or twisted into hands wet with saliva.

There was a girl called Leticia in her early teens afflicted with severe cerebral palsy who had some speech. She was desperately bored and lonely and was prone to stalking visitors through the halls and wards, repeating “Who was it?” or “Why was it?” over and over again. Reaching out to grasp passersby with surprisingly strong hands.

The place was constantly being cleaned. Linoleum floors mopped, huge hampers of sheets filing by in a convoy, people being sponge bathed. But it stunk. It smelled like vomit, urine, bleach and baby food that reeked of pureed pumpkin. I could never eat pumpkin until into my twenties. Even now, I’m not so good with pumpkin soup.

The staff seemed so jovial, at least to me. They carried on one sided conversations with their charges, cleaned up their waste. Tried their best to be everywhere at once, impossible as that may have been. Once, when my sister was still quite young and had   more movement, she rolled off a briefly unattended bathing stretcher and broke her femur.

Wendy deteriorated more each year. From a sassy toddler, to a 5-year-old who could still stand holding onto a rail. To an 8-year-old who could still clap her hands and sit upright in her wheelchair. To a 12-year-old who had an operation to insert rods in her spine to prevent her twisting into a horrible scoliosis. To a young woman who did little but stare into space and grind her teeth with frightening ferocity, lying supine or seated completely artificially. By then, even her head was supported at all times.

Talk to her, my mother would urge me gently. I would but I would hate it. I would fear that she would not know me, or even more, that she would turn her unblinking stare to me as she did at times and see the fear and rage in my heart.

As superficial as it sounds, I think the demise of Wendy’s beauty would have been as cruel a blow to my parents as anything else. She had the promise of being the prettiest of our trio as a little girl. Where my hair blew into a fuzzy cloud, hers was straight and thick like the tail of a pony. Where my brother was scrawny and knock kneed, she had been sturdy and long limbed. Where we had little upturned, piggy noses, hers was fine and almost roman. Over the years, her flawless porcelain skin turned sallow. Her flesh withered around her bones. Her navy blue eyes lost their thick black rim of lashes and popped against their sockets.

It is such an odd thing to speculate about someone who is still living as though they were already gone, but in reflective times we would find ourselves doing it.

I think she would have been tall.

I wonder what she would have chosen as subjects in high school?

Would we have been sisters who fought, or were close?

All we knew for sure was that things would have been very different for her, and for us all.

Perhaps my mother would not have sometimes looked at me on the occasional day when she was at her wit’s end and quietly admit I was the only one she didn’t have to worry about. She might have used her three degrees in the workforce, been able to stretch the wings of her outstanding intellect. Perhaps my father would not have created an emotional island for himself, secluded in his shed with his cat and his red wine. Ignoring us all, year after year, save for the few times a week he and I would engage in a horrendous battle.  Perhaps my brother would not have been such an anxious, dependent child. Misdiagnosed with a learning impairment and medicated to the eyeballs until he developed tics. Perhaps love would have been an easier language for me. The idea of having a child of my own one day may not have seemed completely insane.

It all remains pure speculation. One could go mad surrendering to that line of thought.

In that final moment, I heard her wheezing against the fluid in her lungs but only slightly. There was no fight remaining. She died in our mother’s arms as I watched on, feeling too much and nothing at the same time. A force field from within deflected the guilt, blocked the grief.

The only thing I could think of was that I needed to save my mother. I tucked her into bed at my unit a few hours later after pressing a joint into her trembling fingers.

She died, didn’t she? That happened?

Yes, she did mum. She died.

Two days later I went out and numbly bought her a puppy to take care of.

She still has that fucking dog.

Wendy was buried in Toowong Cemetery, with my grandparents. She lived to 21.

I do not remember much from that day except the following.

I saw my father for the first time in three years.

I was shocked to see all my friends looking back at me from the pews when I rose to give a Peter Pan themed eulogy that I also have zero recollection of. I didn’t know who had contacted them, but I was infinitely grateful that they were there.

Grateful too, when the sadness at last burst from me. It happened as they laid her into the ground and my legs gave way from beneath me. My boyfriend held me up, under the arms. His strength to bear my weight and the familiar beat of his heart against my back were the only things keeping me upright. We went home and I asked him to make love to me. I buried my sorrow in him.

Many years later, my mother and I had a horrendous argument which peaked with me screaming at her to just be my mother! There had festered a fury in me for such a long time, for being the child who did not need her as much as the others. As if I was watching myself from beyond my own body, there poured forth the poison of my frustration and my weighty grief. It was one of the few times I dared to speak of Wendy since her funeral a decade before. She said something I will not forget, and her voice dropped to the low, soothing murmur of my childhood I had almost forgotten.

You poor darling, you lost her too. You lost your little sister.

She wasn’t speaking, I realised, of the wheezing waif that afternoon in the hospital sheets.

She was speaking of my inky haired bathtub companion who loved to splash water at me, laughing as only a small child can.

That was who we all really lost. 

In all things there is a conflict. Wendy’s death brought grief but also lightness for my mother with each passing year. It was as though she had been a hologram who now gained dimension. She was healthier, she laughed more, she gardened and loved her dog and my father again. They sold the house the three of us were all brought home to grow up in and they moved, far, far away.

When the developers knocked down our family home, I felt  more relief, not nostalgia. I tried not to imagine what my mother’s blood must have looked like on the walls that night, so many years ago, if there were invisible traces of it under layers of paint.

It was difficult not to feel elated that the place was gone forever.

Maybe I could start again too.

2017