Alister was almost eight years old – not seven or even seven and a half. He was almost eight and these distinctions matter when you are almost eight. Possessed of an infectious chuckle and a scampish sense of humour, Alister was a typical boy in so many ways. He loved playing with his favourite toys and he adored music. Alister enjoyed being outdoors and relished the feeling of water upon his skin or the wind rushing past his rosy cheeks. Above all else, Alister liked to play with his big brothers William and Arthur and to be held in the loving arms of Kierra and John, his mother and father. After all, he was, as Keirra often observed, their ‘lovable rogue’.
Alister’s zest for life was turbo-charged by the unconditional love of his family. Born without eyes and prone to seizures and respiratory problems, Alister endured heart surgery when he was just three days old. He spent most of the first year of his life in hospital and his life was punctuated by medical emergencies, countless procedures and an endless round of hospital appointments. He was ‘medically complex’ and whilst there were times when his life appeared to hang by a solitary gossamer thread, he was cocooned in such a loving embrace that those of us who have the privilege of knowing Alister’s family were often insulated from the desperate life-limiting aspects of his condition. Alister was PEG fed throughout his life and he required 24/7 care. The fact that John and Kierra were able to manage his care at home was nothing short of miraculous. The fact that they did so with such boundless love, courage and good humour is quite extraordinary. There were times when they were so exhausted that it was difficult to see how they could possibly keep going. Yet keep going they did, for they were sustained by love for Alister and a determination to ensure that he had as normal a childhood as possible. Against all odds, they succeeded in giving Alister not just an ordinary life but a truly wonderful life. There was life before Alister and there will be life after Alister. However, the extraordinary impact that his life has had on family and friends and the entire community of Loughrea in County Galway is something that transcends the short number of years that he was with us.
On the afternoon of Wednesday 18th December, I had arranged to meet an old friend in Dublin whilst Fiona drove to the West with the girls. With an hour or so to spare, I decided to visit the Seamus Heaney exhibition in the Bank of Ireland Cultural and Heritage Centre. In particular, I was drawn to the panel which explored the events surrounding the untimely death of Seamus’ younger brother. Christopher was knocked down by a car when he was just four years of age. The poem ‘Mid-Term Break’ is devastatingly bleak and yet powerful on account of its lyricism and honesty. On this particular day, it turned out to be painfully prescient. That evening, upon arriving at Gort station, I clambered into the car only for Fiona to utter the heartbreaking words, ‘Alister has gained his wings’. We knew he was very poorly but when you are almost eight an ending is unconscionable.
It was a strange Christmas and I think that many of us were simply humbled by the superhuman courage of John and Kierra. The funeral service was beyond sad but beautiful in every regard and whilst John and Kierra’s grief is private and incomprehensible, they will always be well supported by a community who took Alister and the whole family to their hearts. There was only standing room in Loughrea Cathedral and emerging from the organ loft mid-service, I found myself standing amidst a group of middle-aged men whose weathered faces were etched with emotion. Irish men usually adopt a stoic countenance in the face of unfathomable loss, but sadness for Alister defeated such resolve.
As we climbed the hill towards the graveyard, we passed William’s School. Outside the School gates stood his classmates with their heads bowed. When Alister was laid to rest, the sun tried to break through the thick mist which had enveloped us in an almost ethereal manner. Snow Patrol’s ‘Chasing Cars’ played and white balloons were released. One balloon straggled behind the rest and lingered a little before disappearing into the mist and I have no doubt that this symbolised Alister’s quirky individualism.
Alicia chose to come to the funeral as she felt that it was important to have the opportunity to say goodbye. However, there is no rulebook when it comes to such matters and what is right for one child might be inappropriate for another. I do believe that it is important to have an honest dialogue with children when talking about illness and death. Having lived in both Ireland and the UK, I am often struck by the fact that, culturally speaking, death tends to be approached with much more honesty and openness by our neighbours to the west.
John and Keirra provide the most compelling example of parental love imaginable. I am honoured to count them as such good friends and we were delighted when Keirra agreed to become Teigan’s Godmother back in 2017 – she was a very obvious choice. However, John and Keirra would be the first to acknowledge that they would have really struggled without the input of the Jack and Jill Foundation and LauraLynn Children’s Hospice in Dublin. It seems incredible that families in such obvious need are dependent upon charitable organisations to provide respite and palliative care, in addition to specialist therapies and bereavement support. Here on the Fylde Coast, Trinity Hospice and Brian House rely heavily upon the generosity of individuals, and the same is true for Donna’s Dream House. One would have thought that such provision would be at the top of any political agenda and not something left to chance.
However, many of these charitable organisations would not be in existence were it not for the resolve of families to create something beautiful from the very worst form of adversity. Ireland only has one children’s hospice and this was established by Jane and Brendan McKenna after their daughters, Laura (4) and Lynn (15) died within just two years of each other. Having had personal experience of the lack of respite or specialist care for children with life-limiting conditions, Jane and Brenan established a foundation and dreamed of building a hospice dedicated to their daughters’ memory. They worked tirelessly to raise funds and a dedicated palliative care unit for children was opened by President Mary McAleese in 2011. LauraLynn provides outstanding support for families and this includes providing much needed holistic therapies for siblings. I find it remarkable and life affirming that Jane and Brendan McKenna have created something so important in the midst of such despair.
Similarly, the Jack and Jill Foundation was established by a family that had experienced a huge loss. Jonathan Irwin, a former auctioneer, stud owner and racetrack executive established the foundation as a result of his experiences following the birth of his son Jack in 1996. Jack developed severe brain-damage shortly after birth and this left him without the ability to swallow, see or hear. Medical professionals advised Jonathan and his wife to leave Jack in hospital. They refused but found themselves effectively abandoned after having resolved to bring Jack home. There was no respite support in Ireland at that time and so during a period of immense trauma, Jack’s parents faced countless bureaucratic obstacles and logistical complications. Indeed, it was the kindness of a recently retired nurse that sustained the family during the remainder of Jack’s short life. Incredibly, out of this suffering and anguish, something good did emerge. Jonathan Irwin stated that ‘We wanted to ensure that other families would not have to go through the same sort of ordeal, and we set up the Jack and Jill Children’s Foundation to help provide a comprehensive range of support services for babies and families’.
So, as we enter a new year, we are reminded of the need for Rossall, as a community, to continue working hard to raise funds for our partners on the Fylde Coast who transform the lives of those who face very real adversity. Throughout 2019, I know that many of us felt humbled by the likes of Len and Barbara Curtis and the families that we met at the Radio Wave Local Heroes Awards. At a time when our politicians arguably fail to inspire us, we should celebrate heroes within our own communities. Very often their commitment to those who are vulnerable or in need is forged out of personal adversity and dependent upon the courage and commitment necessary to effect meaningful change. Above all else, we should educate our children to reflect upon what they can give to society because, ultimately, this is what truly matters.
It is too soon to talk of Alister’s legacy and to refer to him in the past tense seems entirely wrong. However, there is no doubt in my mind that this ‘lovable rogue’ will continue to shape many lives well into the future. We are all better people for having known Alister and the example set for us all by John, Keirra, William and Arthur will never be surpassed in terms of courage, compassion and unconditional love.