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Dawn Hart: Battling to let go

When Dawn Hart’s twins were born at 26 weeks, she was thrust prematurely into her role as mother and, ultimately, carer. Five years later, Dawn looks back at the battles that lay ahead. Not just the fight for every scrap of support, but the fight to see beauty in the midst of pain, and acceptance in the midst of suffering.

Dawn Grace and Ethan Hart"Nobody ever takes you into a room like that to give you good news"

At the hospital, the day after my twins were born, my husband, Garry, and I were ushered into a cosy room with flowers on the wall. Nobody ever takes you into a room like that to give you good news. I remember the words ‘Your son has had a stroke in the womb, which has left him with brain damage’. I remember shaking as I tried to take in the news and the blur of the other words ‘Ethan might not walk or talk, we really don’t know what disability he might have’.

Just as we were coming to terms with this bombshell, we found ourselves a week later in a different neonatal unit with Ethan’s twin, Grace; another room with a comfy sofa and flowers on the wall. I braced myself. ‘Your daughter has contracted necrotising enterocolitis, we are not sure if she will survive the next 48 hours’. By a complete miracle she made it through, but two bowel surgeries left her with short bowel disease and the need to be fed through tubes. Add a genetic condition into the mix, for good measure.

"I became a mother, but more than anything I became a carer"

Becoming a mum can be an overwhelming experience at the best of times. I became a mother, but more than anything I became a carer. They’re not the same. If you have had to give medical care that is distressing to you and your child, if you have watched your child cling on to life time and time again while you inject lifesaving antibiotics into their central line at 2am, you’ll understand it is definitely not the same thing.

I long for days when I can just play with my children, I grieve the exultant moments with a new-born baby that I never had. Every time I see a mum feeding her baby I wish I had been able to do that for my daughter rather than feeding her through a tube in her nose.

"I can still see the beauty of this life every morning when I wake up my children"

My husband had to work every hour he could to keep a roof over our heads - we had no outside help from family or friends. At times of crisis you quickly learn that most people would rather bury their heads than help a sick child. I remember one friend visiting my daughter in hospital and the look on her face summed up the fear I sensed in everyone around us. In my five years as a carer, I’ve learned two primary modes of behaviour. Firstly I’ve learned to fight – reduced to tears by an over-burdened health care system that cannot hear my prayers. Steeled to survive years of broken sleep, to cope with half a household income and sustain a marital relationship buckling under the strain of looking after two disabled children.

But crucially, I’ve also learned the opposite; to accept and let go – to grieve what I can’t change and find light in the darkest of days. I can still see the beauty of this life every morning when I wake up my children. It’s taken me five years to learn this lesson, drawing on therapy and my Buddhist faith, to live the life I have, not the life I thought I was going to have. It doesn’t mean the battling is over, nor is it the end of my suffering. But it does mean that day by day I can learn to live with the scars I carry in my heart and mind in a way that does not crush me.

Dawn Hart hugDawn Hart Ethan and Grace

Dawn Hart doctorsDawn Hart with Ethan and Grace

All photos: Chris Steele-Perkins / Magnum

This article first appeared in Caring magazine issue 39. Packed full of news, information and features on all things caring, the magazine is out four times a year for Carers UK members. To get your copy, join our supportive community and be part of our movement for change.



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