Tuesday 6 December 2016

A mother's agony: 'You either get up or you don't'

When Jane McKenna's daughters Laura and Lynn died within a two-year period, she faced unimaginable pain. But hers is an uplifting story of courage and tenacity

Tanya Sweeney

Published 20/12/2015 | 02:30

Jane McKenna and her daughters Laura and Lynn.
Jane McKenna and her daughters Laura and Lynn.

When Jane McKenna's four-year-old daughter Laura died after heart surgery, she did just as any grieving mother would. In one last act of maternal care, she dressed her daughter in a red dress she'd worn for her big sister Lynn's confirmation, brushed her Shirley Temple curls and laid her out in her tiny white coffin. It was the end of an arduous journey; one that saw the family boomerang in and out of hospital wards for much of Laura's short life.

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After Laura's intimate church service, there was little time for the family to catch breath and draw comfort from family and friends. Jane, her husband Brendan and Lynn had to return straight to Our Lady's Hospital in Crumlin, where Laura, then 14, was being treated for leukaemia.

Worse was yet to come for Jane and Brendan. Just 20 months later, Lynn lost her fight with cancer, aged 15. Only a few weeks before her death, the family had been told that there would be no recovery from the cancer. A much hoped-for bone marrow transplant would never materialise.

"I clearly remember sitting in the kitchen, crying and saying to Lynn, 'how I wish I could take your place sweetheart', and her answer, 'Mam, it's OK. You must get on with your own life now'," writes Jane in her new book Laura & Lynn's Story. "Oh! What courage. I hope I'll have even an ounce of it when my time comes."

Yet even in the unrelenting horror of those final few days, there were a few brief moments of respite for Lynn. First up, a couple of ticks on the 'bucket list'; among them a trip with friends to Dromoland Castle thanks to the Make-A-Wish Foundation. Also on the itinerary was a weekend in Manchester and a highly-anticipated Westlife concert. Lynn and Jane talked endlessly in those final weeks and enjoyed some special bonding time; something that Jane would be grateful for in years to come. A family friend had organised for Ronan Keating to call the teenager on her deathbed, while President McAleese, who had previously met the family, sent an Easter plant and card on Easter Sunday. Lynn had also summoned the courage to write her will, decreeing that she be buried in a white coffin with her watch (so that she could tell the time), a torch (so she could see) and her diaries (so her parents wouldn't read them). There was one last act of teenage feistiness: Lynn was also adamant that she was 'taking the good runners with her'. Jane's poignant account of her dying teenage daughter attests to a spirited young woman, faced with unfathomable tragedy in her tender years, but facing it head on with courage and acceptance.

For many parents, the loss of two children in such a short space of time would likely drive them under the duvet. Yet Jane knew she had to pinpoint a reason to carry on.

"The emotions of your heart are shattered beyond belief, and you struggle to keep it beating," she writes.

Channelling her anguish, Jane undertook her first Leaving Certificate exams, and started to volunteer in the primary school that, had she lived, Laura would have attended.

Amid it all, there was a grieving process to undergo. As a means of coping, Jane took to writing letters to her daughters in her diary.

Jane certainly busied herself, but in 2002 she became acutely aware that she wanted to tackle a more substantial and purposeful project.

After several years shuttling between hospitals in Dublin with both of her daughters, it became quickly apparent that a purpose-built children's hospice was lacking in the city; somewhere for youngsters to die with dignity and in comfort.

Lynn did eventually die at home, but as Jane realised, the option was not necessarily available to all ill children. There was only one name appropriate for the project: LauraLynn House.

Still, the path didn't run smoothly at the outset; some members of the medical profession were sceptical (mainly, as Jane theorises, because "they found it hard to deal with the fact that they could not make all children better").

However, the project received a huge boost in 2007 when the LauraLynn Foundation linked up with the Children's Sunshine Home via The Irish Hospice Foundation. A whirlwind few years of fundraising, media engagements, administration and building followed. Between 2002 and 2007, Jane and Brendan raised €5m for the project.

Finally, on September 27, 2011, LauraLynn House was opened by President McAleese.

The facility is made up primarily of eight children's rooms, four family apartments, a number of picture-perfect gardens, and playgrounds designed for children in wheelchairs.

Jane and Brendan have been working tirelessly on the project ever since, all while changing the face of care for terminally ill children in Ireland. Last July, a home care service was introduced; there is also the not-insignificant business of raising €3m a year to run the facility without direct state funding.

Happily, the foundation has many celebrity supporters, among them Miriam O'Callaghan, a patron of the charity, and Ray D'Arcy.

While Jane is lauded for her heroism and tenacity in the face of unimaginable loss, Laura & Lynn's Story shows a woman whose survivalist approach was plain: 'you either get up or you don't'. Jane's ultimate wish for LauraLynn is a simple one; that no child would ever need its palliative services.

Despite inexorable strides in cancer research and treatment, the medical world is some way off that particular goal.

However, in the meantime, LauraLynn provides a valuable service for families going through the unimaginable; providing comfort, helping families create lasting memories and creating a peaceful haven for children and their parents facing the eye of the storm. And amid the ongoing success of Ireland's only children's hospice, the fond memories of Lynn and Laura - who would now be 29 and 20 respectively - burn brightly.

Laura & Lynn's Story, by Jane McKenna, is out now via Liffey Press. Proceeds go straight to the LauraLynn Foundation

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