You don't know what it's like (to be a mother)

As my niece lay dying, her mother uttered words I will never forget:

“You don’t know what it’s like –“

She managed to stop herself in time, my own beloved sister, from saying I had know clue what it was like to be a parent, to be a mother, to be the mother of a dying child.

I had never suggested I did.

Much in my life has forced me to reflect on the nature of parenting. Starting with my own parents; a stressed, time-poor and (very rare for her time) fulltime working mother to my low coping, old-world father. Of course it was their actions who largely shaped whatever it is I am now. Circumstances meant they largely depended on my five elder siblings to raise me, and that is pretty much where things went awry.

As a very small child who didn’t quite understand how reproduction worked, I came to my own ideas. I decided that it was love that created children. I knew there was a physical act (not until much later would that act earn the title of “rumpy pumpy”) as well, I did grow up on a cattle farm. Still my own theory was that babies were derived purely of love. For their faults, my parents did truly love each other. It was just that my mother did not chose my father for his quality parental potential. My logic was, my parents had a deep and unwavering love, therefore they were blessed with a lot of children.

Just after my fourth birthday I became an aunt for the first time.

My niece was very special to me from birth. As my sister often minded me, I got to spend much time with my niece. I was there as the story unfolded; things were not as they should be with my niece. She was having convulsions, her development was delayed.

Cheeky and affectionate, there was nothing ‘not normal’ to my young mind about my niece. I suspect that was the key to our relationship. Before the age of 10 a special care facility opened locally, and her parents with the best intentions placed her there. A few years later they would move with their younger children some distance away. Although they would always keep a room designated for my niece at their homes, the visits became less frequent. My niece became institutionalised in behaviour and outlook. Our mother began to work towards improving the situation for my niece and kept visits and contact regular. When the trend to independent housing in the community developed our mother fought to have my niece accepted into a supervised group home in her early twenties. From then she flourished. She would also have overnight stays at the farm with my mother, where her love of animals developed.

My niece loved my succession of feline friends. The most recent being Bovary:

What’s the black and white pussy cat’s name?
Bove-are-ree!
What’s his other name?
Love-er-ley!
Why do you call him ‘Loverley’?
Because he’s a loverley, loverly boy!

My relationship with my niece was one of the few constants in my life. We seemed to understand each other. While others were judging me harshly, she accepted me for whatever I was. We became more like sisters, she often liking to bully me. It was okay though. This was maybe the one bully I’d ever encountered who was without guile.

In the late 1990s her parents decided to move to the United Kingdom. It was to be a ‘working holiday’, yet it still continues to this day.

Our mother became legal guardian, seeing to her every need, including medical and administrative. Developing close relations with care staff, and welcoming my niece (on my niece’s own demands) for all day Saturday and Sunday visits at my mother’s newly purchased home in town, having retired from the farm. My niece grew belligerent and contrary as she got older, but would obey her grandmother’s every request. Theirs was a relationship built of great mutual trust and love. It was a delight to behold.

Almost five years ago, the discovery that my niece was terminally ill with ovarian cancer came in blurry series of events.

Far worse was to come. The final results were not in when she was admitted to hospital with breathing difficulties. The tumour was pressing up on her lungs. I was living and working in a nearby town, and would travel at night to sit with her. It was only then I realised the true depth of our relationship. Frightened and alone in a hospital bed she would look deep into my eyes, as if to find reassurance, or comfort. I witnessed much in that hospital. Nurses who refused to take account of my niece’s disabilities; who would breeze in and out of her room saying “she’ll eat when she wants!” or “she’ll take her medicine when she is ready!” No she wouldn’t. She never had before.

For the first time ever, I saw her cry. I would be allowed to stay late into the night to keep her calm. My presence would be required throughout the rest of my niece’s precious time to help sooth her. I could use music therapy to help ease her burden. Her favourite harmonies being those of The Bee Gees, particularly the one song; You Don’t Know What it’s Like the opening lines being one of few things that would ease her distress:

Don’t shed a tear for me
No, it’s not your style
If you’re not here by me
Then it’s not worth while

After just a few days of her hospital stay, helped my mother hatch a plan to ‘rescue’ her from hospital care. With a long history of palliative care work and the connections of my niece’s house staff; a wheelchair, a mini van with wheelchair capacity, a hospital bed were quickly found and delivered. My niece was smoothly whisked out of the hospital and taken directly to my mother’s house. I will never forget the look of relief on niece’s face at the sight of this favourite place. With ease she made it up the front steps of the house she would never leave again. The bed was set up in the middle of the lounge room, with her friend “Loverley” curled up on the end. She was happy.

The frantic attempts to contact my niece’s parents had not stopped throughout this crisis. They did not return messages. They could not be kept updated on the fast moving developments. My mother decided that as guardian she had to continue making whatever decisions were best until her parents could be consulted. Their feelings were considered in every action. We started keeping a lengthy diary of what my niece was saying, how she reacted and more. The intention was to record the time that the parents were missing.

After one difficult night of my niece’s terminal delirium, my mother and I had to face more help was needed. The next day a team of house staff volunteers began night shifts to sit with my niece throughout the night. Loving, caring co-operation from people very familiar to my niece soon settled into place. It was hard round the clock work, but it was the very least she deserved.

All of that changed when her parents arrived. It took some weeks, but they made it eventually. Sadly, my sister in a toxic mix of grief, guilt and exhaustion changed the atmosphere distinctly. It became about her needs, her loss, her grief. Volunteers were treated poorly and eventually dispensed with, all offers of compassion were spurned by attempts a martyrdom. Visitors where turned away. She refused to sleep, or leave my niece. My mother stayed in the kitchen. Now I regret that for too long we were distracted by focusing on my sister’s needs.

What occurred in the next weeks is probably irrelevant – like so much of my detail – to this post. The moments of great beauty were only surpassed by those of wretched ugliness as death lingered over my mother’s home.

Somewhere in the midst of all of this is where my sister spat out her ugly words.

No I did not know then what it was like to a mother. I still do not know.

Back then, I was still a while off finding Wobbles. I had reached the age of forty, and my hopes of a family of my own had been on a down hill slide for at least a decade. I had long been delving into other ways of finding love.

Right at that moment I was feeling the indescribable grief of being faced with losing the person who (outside of my mother) had loved me most. The person who had allowed me to love them back. This tiny figure, bed ridden and emaciated. She was refusing fluids and morphia was not coming close to reaching her pain. Now sometimes at night, if things are too quiet, I fear I can still hear her cries.

But still, I had to pay due reverence to my sister’s role as mother.

More than four years later, I still wonder about what it means to be a parent. Infertility and IVF does that to people I am sure. Our quest for parenthood is sharply contrasted by those who stumble into the role very early and without planning.

After the death of my niece, my sister spent days at the funeral home sitting with her body. Two of her long absent siblings showed. My sister placed strict demands on the funeral arrangements and service, all were to highlight her role as mother.

It just seemed a little too much, way too late.

A fortnight after the burial the parents returned to the United Kingdom. From where my sister would send cards to my other niece to take to her sister’s grave and force through under the granite covering.

My feelings for my ‘big’ sister – the one I depended on – the only sister who did not join a whacky revivalist cult have irrevocably changed.

A second sister, a cult member and mother to three grown boys recently wrote me a scathing letter, rebuking me for crimes unknown. She told me at length how her children are adults and they have ‘choices’. I was struck by the irony that this is the same mother who twenty years ago in response to my question about what would happen if any of her boys grew up and wanted to leave the group said;

‘Leave? Why would they leave? If they left they’d have NOTHING!’

Is true, fair, honest motherhood something that could allow a woman to threaten her children with the Doctrine of Separation, whereby to displease or leave the ‘church’ would lead to complete ex-communication from family and community? Does a mother have in mind the child when she commences the early indoctrination of a child into a set of beliefs that the wider community would likely view with alarm? I still have vivid memories of babysitting a two year old nephew as he went into a frantic search for bible story books from the bookshelf; ‘Praise the Lord! Praise the Lord! Praise the Lord! I must Praise the Lord!’ He repeated over and over in parrot fashion.

I am left with the distinct impression that parenthood is not a God given right, but more of a precious honour to be treated with dignity and respect.

So I may never get to have anyone call me ‘mother’ but somehow I feel a little comforted in the thought ultimately the ability to care for and love a child is not limited to those responsible for the creation of that child.

Name and deed can sometimes fall so very far apart.