Carmel Battigan on losing her 18-year-old son: 'At first, it was an effort to breathe, but grief evolves. I had to find a way to live again without him'
Death of son led Carmel to set up Anam Cara group
Carmel Battigan was determined to find out why her teenage son Carl suffered so many tummy bugs and headaches. One doctor said he had eye strain. Another diagnosed a stomach ulcer.
Tragically, the early signs of brain tumour are often so subtle it can go undetected for years, and this is what cruelly took her youngest boy's life at the age of 18.
"I knew in my gut something more was going on - mother's instinct, I guess - so I made an appointment with an eye specialist," she says. "First we went to Carl's favourite restaurant in town for lunch and I noticed his co-ordination wasn't right. Then he said, 'God, Mam, my head's bursting!'"
They went to the specialist two hours ahead of time and in the waiting room, Carl had a sudden loss of vision. It lasted just a minute, but he was rushed to A&E where Carmel waited anxiously for hours while doctors ran tests on her son, then aged 16. Eventually, a doctor came out and spoke to her.
"She told me, 'There's no easy way to say this, so I'll just say it straight out. Your son has a large brain tumour. He'll possibly have surgery tonight.' I was completely, utterly devastated."
That marked the beginning of two years of extensive chemotherapy and radiotherapy, and Carmel is grateful to have had that time with her son.
"Parents whose children die suddenly often feel robbed they didn't get to see their child one last time. The shock paralyses people.
"I had time with my six-foot-tall, blond, handsome son, but to witness his suffering and see his appearance change with all the treatment was heartbreaking. It was an abnormal period which, over time, became a new normal; the diary filled up with appointments for scans, MRIs, blood tests, chemo."
A few weeks before he died, shortly after his 18th birthday, doctors delivered the news she'd been dreading: the cancer had spread to his spine and his treatment was now palliative, to relieve pain.
"I had a long conversation with him, explained what 'palliative' meant and asked if he understood. 'I do, Mam,' he said and hugged me. He told me he loved me and thanked me for being the most amazing mam in the world.
"Then he added, 'Mam, I don't see myself any more. If this tumour takes off and does its own thing, if I can't be me, please let me go - but not here. Not in this hospital. I want to be at home with my family and my friends'.
"His pals were doing the Leaving Cert when we took him home. Every day he'd ask, 'What day is it? What exam is on today?' He didn't want to disrupt the Leaving for any of his friends. Finally, he asked the same question and I answered, 'It's over, love. All the girls and lads are finished their exams'. He died that night, on June 13, 2003."
Carmel's pain was overwhelming. "At first, it was an effort to breathe, but grief evolves. You don't wake up one day and find it's over. It shifts and moves, and you move in and out of it, until the waves get further apart. I had to find a way to live again, not just cling on."
Carmel's life took a new turn two years after her son's death, when she went to college and graduated in theology, psychology and clinical pastoral studies. She now works as a hospital chaplain.
Anam Cara, the association for bereaved parents, came about when Carmel and a small group of other mums met at a bereavement camp in Barrettstown in 2004. They struck up such a strong connection, they met once a month after that.
"It was such a relief to be able to talk openly and honestly about what we were feeling, without anybody judging us, to laugh and cry together.
"We were like buoys for each other, keeping each other afloat when we thought we might drown in our grief, and that's how the seeds of Anam Cara were sown. What we created was so special, we wanted to roll it out to become a beacon for bereaved parents."
They set up Anam Cara in 2008 and to date it has helped more than 7,000 grieving parents nationwide. A registered charity, it runs support groups, a website people can access at any time, private message forums, bereavement talks, family remembrance events, support videos and more.
"There's an unspoken connectedness at an Anam Cara meeting. It's a kind of sacred space, a place where there's empathy and acceptance."
For more information, visit www.anamcara.ie.