Sixteen years on, Jane McKenna says the pain she feels at the loss of her two children is as acute as ever.
“Sometimes, it’s worse. I do have very bad days. A friend of Lynn’s – she would have been 29 now – had a baby recently, and I can’t help thinking what Lynn and Laura, who would be 20 now, would have been like. Would I have been a grandmother by now myself?” says Jane.
In the depth of their grief however, Jane and Brendan McKenna began a remarkable campaign that was to lead to the creation of Ireland’s first children’s hospice. Between 2002 and 2007, they raised €5m. Millions more has been raised since then and in 2011, LauraLynn House, a purpose built facility for children with life-limiting conditions was officially opened.
Now, the extraordinary story behind LauraLynn and the girls who inspired it is to be told in a book by Jane.
“It is their stories, there is a little bit about my own background and contributions from a number of other people who have been involved over the years,” says Jane when we meet to discuss the book, due out in October. “But it is the girls’ stories and the good that came from it.”
Lynn’s last few weeks before her death in April 2001 were the particular inspiration for the journey which her parents were later to undertake.
“She had such courage and we did so much in those last few weeks. Lynn wanted to die peacefully at home and not to have pain. She didn’t want to go back to hospital and we wouldn’t have wanted that either.”
“And she did die peacefully at home,” recalls Jane. But that option wasn’t available for all children who were facing death.
Before the opening of the hospice a return to hospital was the only choice for many families to get the care their child needed in their last days.
“Hospitals are very busy places – it’s not their fault, doctors and nurses are wonderful but they’re busy, and more about the medical needs and cure.
“I later researched children’s hospices in England and they’re beautiful places. They are happy and peaceful and allow families to create happy memories,” says Jane.
It was just under three weeks before she passed away that Lynn and her parents learned that this time, there would be no respite and no recovery from the leukaemia. Lynn had become too ill for the bone marrow transplant that they had hoped for.
“She tried so hard to fight it, but the leukaemia came back and there was nothing anyone could do.
“She was told that she was dying, she wanted to know, cried a little and asked “how long have I got?” She was upset for us and how we would survive without her and Laura.
“You felt so helpless, nobody in this world could help her, nothing could save her, I would have done anything, but there was nothing we could do,” says Jane.
What they did do however, was make the time remaining as happy and full as they could.
Two weeks were packed with a trip to Manchester and a Westlife concert at which Lynn and her family were special guests. There was time with friends and a stay in Dromoland Castle, thanks to the Make-a-Wish foundation, and many other special things too – which Jane says created “everlasting lovely memories“.
And the 15-year-old wrote her will and arranged her own funeral.
“She said what she wanted in her coffin – she wanted her diaries, probably so I wouldn’t read them which I would have,” Jane laughs. “She wanted a watch so she could tell the time, she wanted a torch so she would have light and she wanted a picture of her friend Lorraine (who had previously passed away from leukaemia) and Laura.
In the last week of her life Lynn began to “wind down” but during that time, her mother remembers, they talked a lot.
“The courage she had was unreal. I am so grateful we had that special mother/daughter time.”
On the day that she died, Lynn passed away peacefully, as she had wished, in her own home.
Jane is acutely aware that it could have been so different.
Bringing about change
Other children’s dying can be accompanied by symptoms which necessitated – before the hospice was opened – a return to a hospital and all that that entails. Jane had begun to think of the need for a hospice after Lynn’s death and had started researching how to set up a charity when a TV series about Our Lady’s Children’s Hospital, Crumlin really galvanised her.
“They asked me would I go back and take part. It was something I had to think about, I was very shy as a child and I still find it nerve wracking to get up in front of people and talk. But I went back to the hospital and talked about my experience,” says Jane.
Her appearance in the programme led to a call from an Irish Times journalist, the Family Correspondent at the time, who asked if she could do an article on Jane and Brendan and the idea of building a children’s hospice.
“It was a beautiful article. I gave her my name and address, and about a week later, money started coming in the door. I said then, I’d have to do this – it seemed it was meant to be,” she recalls.
That was around 2002 when a lot of people told Jane that they couldn’t believe that this country didn’t have a hospice for children.
A charity was established but apart from an accountant, there was no professional help.
“I was on my own raising the funds, I had no office – just a phone and an accountant. People used to ring and ask ‘could you put me onto HR please’ – I used to laugh. We had no overheads, no marketing, nothing like that and we raised €5m between 2002 and 2007,” says Jane.
Support
What she did have was a lot of support from people coming forward and offering to raise money.
“I’d get a call from someone if I was on a programme on the television or radio – people would do all sorts of things like have a coffee morning or a swingathon.”
Ray Darcy at one stage organised a half marathon which had the ambitious target of raising half a million euro. It raised €600,000.
Jane says she herself just told her story and why there was a need for a children‘s hospice and “one event lead to another”.
“People‘s generosity never fails to amaze me to this day. I still find the publicity side difficult, but I got used to talking over the years.
“I’d be shaking before I’d have to talk in front of people. I was on the Late Late Show, I did Brendan O’Connor, I talk to groups of people, but it’s still not really my thing. However, I always feel when I get up to talk, the girls must be there and holding my hand. I don’t write it out, I just speak from the heart.”
She recalls being invited to be honoured by the America Ireland Fund event in 2010 as being one of her more nerve-wracking experiences.
“They asked me to go to Boston one year as their Honoree. I thought they had got it wrong – I was not the sort of person who’d be at a thing like that. There was a huge crowd of people in the room, the Irish Ambassador among them, and I had to speak to around 2,500 people.
“I was pretty nervous. When I think of the things I’ve done, I sometimes can’t believe it, and I‘m sure my girls must smile at times.”
A soft-spoken, unassuming woman, Jane says she could never have imagined herself fronting what became such an enormous project. A Dubliner, she left school without her Leaving Cert after getting a job in the civil service. She dreamed for a while of becoming an air hostess but the nearest she got, she says, was herself and her pal hitching out to Dublin Airport during her lunch hour to see the planes and soak up what was then considered the glamour of the place.
She met and married fellow public servant, Brendan and six years later Lynn was born. It was almost nine years before Laura came along. What was initially thought to have been a slight murmur of Laura’s heart turned out to be a serious heart condition that set the couple on the long and often painful path of hospital visits and heartbreak.
Greatest wish
Today Jane says that her greatest wish would be, that there was never a need for a LauraLynn hospice and that no parent ever had to go through the illness and death of a child. But reality shows there is a need.
The campaign to build the hospice took a big step forward around 2006/2007when the LauraLynn Foundation linked up with the Children’s Sunshine Home, an organisation which for years had provided residential care for children with intellectual disabilities. Children’s Sunshine Home was in the process of changing what it did and the services it delivered when the two were “introduced” by The Irish Hospice Foundation.
Sunshine already had a facility in south Dublin and a site and it was on this that the sod for LauraLynn House was turned in 2009.
These days, families with seriously ill children can get respite and palliative care at the beautiful facility on the Leopardstown Road. Jane lights up as she described the eight children’s rooms, the four family apartments, the beautiful gardens, and the playgrounds – suitable for children in wheelchairs.
The atmosphere could not be more different to that of a hospital where the focus is on making patients better.
In LauraLynn, Jane says, families can have peaceful times together, building memories for the times ahead and knowing they’re getting the best possible care. Apart from the respite offered, sometimes for parents who just need a couple of days to spend with their other children, there are also things like family days, pampering days for mums and dads, and bereavement services, music therapy and play therapy.
“Some of the kids when they go there talk about coming to their family’s hotel,” says Jane.
No sign of stopping
The long-anticipated opening of the hospice by President Mary McAleese in 2011 was a wonderful day for Jane and her husband Brendan. But Jane, now a very youthful 61, shows no sign of stopping.
The annual cost of running the facility is €3m and there is still no direct funding from the state (some of the other services which were provided by Children’s Sunshine Home and continue to be provided in the complex are part funded).
These days there is a team of professionals and fundraisers but their work is hard, says Jane, and some funding from the state would be appreciated. A home care service which started in mid-July of last year will also cost €800,000 annually and it’s hoped that that will be expanded.
After 14 years of almost relentless fundraising and spreading the message about children’s hospice, Jane is finally getting back to finishing the book she started years ago. It is a painful story, but Jane believes that it is also a story about hope.
“My wish is that the book lets people know that there is hope. It is about where I have come from, and I’m saying there is life after all that has happened. Hopefully people can get on and make a life,” she says.
Easier said than done sometimes, but, Jane says: “I love life and I love people. There are still lots of things I would love to do, and I know my girls would be disappointed in us, if we didn’t at least try to live the life they were denied, all too soon.
“I have good health and I think while we have our health and our energy, we should live every day as well as we can. Our health is without doubt, our most precious possession.”
For more information about the work of LauraLynn see www.LauraLynn.ie
Greetings Such a sad inspiring story. May I ask please if these amazing parents have published a book about their story? Regards Rose