Today is ‘Gumboot Friday’, a fundraiser for the charity I Am Hope, in which New Zealanders are encouraged to walk in the shoes of a child who needs mental health support. All funds raised provide free counselling to children in need. We asked a mother to share what it’s like to parent a child with a mental health condition.
It is 9.30pm and I sit listening for the thumps, the bangs, the shrieks that will eventually build into crescendo of hysterical screaming, terror and intense and overwhelming anger. “The volcano” she calls it. And once erupting it won’t stop – not for hours. We will attempt to stay calm, to offer kindness, and also to keep ourselves and our younger daughter safe, we have moved all our precious objects collected over our travels, after some hard lessons and harder losses. Ourselves, well, we roll with the punches. Eventually, if we are lucky it will stop in time for us to eat some dinner, clean the house and the destruction up, make lunches and fall into bed hardly talking (often sniping), for it to start all over again in the morning when she gets up. On good days, at the moment, this only happens once.
My lovely, bright, vivacious and strong willed six-year-old I can no longer find; brief glimpses of her reappear, but like a cloud moving swiftly in a sharp northerly, she is gone again, and with her my hope. My grief returns, so sudden, I miss her so much and feel so desperate and so very sad. Yet I also just want to run, get away from her, and never look back. To escape from her rage, her vindictiveness, and her constant ability to tear me apart from the very inside.
This is a story a little bit about anxiety – and how it affects our children and us as parents – but primarily it is a story about empathy. My empathy for those parents who exist on that desert plain of desperation and grief and bewilderment. As they struggle for days, weeks, and years, to come to terms with the loss of the child that perhaps they had once, or perhaps the child of their dreams that never was, and live the reality of only. just. managing.
This year has been hard, easier than many in the world, but harder than others. It was especially hard for my five-year-old daughter. Her grandfather was diagnosed with a rapid and aggressive cancer, she watched as her mother and grandmother and uncle and aunty floated in and out of the house and the hospice, looked anxious, even angry at times, and cried. She saw a strong man fade and turn away from the world, and she felt for the first time in her short life the awful shadow of grief. We moved. She left the only house she ever knew, the very room she was born in. And she was taken from her small safe school, to a new noisy, robust, multi-ethnic and urban one. Everything in her life changed, nothing was safe anymore, nothing was anchored, even her fundamental knowledge that her parents would always be there was ripped away and turned upside down. They would die. They would leave her and die.
At first, her anxiety seemed pretty normal in the context, she got a bit scared of the dark, she could not sleep, and she came into our room and cried. She worried about us dying. We did not sugar-coat it, we talked honesty about it, but we tried to keep it safe for her. It seemed, manageable, and normal. Then came some conversations about being scared about why there was no edge to space, and a bedtime routine that went on for hours as she had to get the covers ‘just so’ over her head before settling. Her new teacher mentioned her hanging back in class, following her round, and being in a constant state of agitated movement. And then, well it just all went to Hell in a hand basket. If I thought sleep deprivation was bad, the ‘will this ever end’? desperation of the baby phase, well that was all just fucking amateur hour in comparison to this. The aggression is what took us back, the anger and violence and screaming and and…and…and the willful smashing of our things, the strength that a six-year-old body holds is amazing, as a kick to the solar plexus is brutally delivered for the eighth time.
There is no warning for us, it could be over anything: The wrong amount of cheese on the pasta or a programme that ends too soon. It is, thank goodness, always at home and always with us (and this our psychologist tells us is a good sign). Our psychologist also tells us that the behaviour is a symptom. A symptom of her anxiety and her loss of control of her world. And as she tries desperately to bring order back to the chaos that lives in her mind now, she tries the only way her little undeveloped brain knows how: To control absolutely everything. We talk of needing to bring back the sense of security to our child through kindness, empathy, and strong leadership. We are lucky in many ways, we can get evidenced-based professional advice when we need it. We can afford it, and we know of the science of clinical psychology.
So I do not write this to seek unsolicited advice on our family’s grief and desperation, rather to offer solidarity with those parents who face this day in day out with no hope of it ending. Hopefully it is also a story that will help other parents feel less ashamed when their child’s behaviour confounds them. At times I feel so ashamed and guilty that I did this to our child, I feel that others will judge her behaviour (and her) and judge me for it, because perhaps once, before I understood that when the holes in the Swiss cheese line up shit just happens, I would have been that arsehole parent who would have judged others.
I so want my daughter back, but I feel terrified that she will never return (they call this shark music in the trade, when your brain leaps ahead to all those worst case scenarios that stop you from just being present and giving your child what they need to feel safe and supported right then and there). I hope that what we are doing will work because she seems so terribly unhappy and so scared – and us with her.
I think of those parents who every day know that this may be as good as it gets, and I respect them intensely. They must grieve their loss so deeply and find it all so terribly unfair when they look at parents struggling with just the everyday shit. Because being a parent is hard, but being a parent when the world and your child no longer makes sense is just plain Hell.