Speech at the Twentieth Anniversary of Barretstown
Barretstown Castle, Co Kildare, 15th February 2014
I am delighted to be here today to mark the twentieth anniversary of Barretstown. I would like to thank Dee Ahearn who invited me here today to mark this significant anniversary and all of you for welcoming me so warmly.
Is geal liom, go deimhin, an deis a bheith agam aitheantas agus ard-mholadh a thabhairt don obair an-suntasach atá ar siúl gach lá i mBaile Bhairéid chun seans a thabhairt do pháistí breith ar a n-óige in athuair, agus athcheangal a dhéanamh leis an toiliúlacht agus an meon aerach sin, is eilimintí chomh tábhachtach, agus chomh cothaitheach sin go deimhin, iad araon, dár mblianta luatha.
[I am, indeed, very glad to have the opportunity to recognize and commend the very significant work that is done every day in Barretstown to allow ill children to reclaim their childhood, and to reconnect with the spontaneity and carefree spirit which are both such important, and indeed nurturing, elements of our early years.]
Barretstown is, of course, part of a larger global family; the largest family in the world of camps for children with serious medical illnesses. It is just over a quarter of a century since the first Hole in the Wall Camp was founded in Connecticut, bringing to life a vision by the late actor Paul Newman of a place where seriously sick children could retrieve that hope filled childhood space which is so often lost, damaged or shadowed following a diagnosis of a life changing illness.
Thankfully, the vast majority of children who develop serious illnesses such as cancer now survive and are allowed the opportunity to grow and realise their potential and possibilities. However, along with a serious diagnosis, and the often long and difficult road to recovery, can come many psychological and emotional challenges whose impact can reverberate even after the illness itself has been cured, or remained in long remission.
A cancer – or other serious – diagnosis can throw a child into a suddenly unfamiliar world; a world often dominated by stays in hospital and frequent medical appointments; a world where their attendance at school becomes sporadic; where they are unable to sit exams, or take part in the sports days and school plays and outings which bond and unite their class mates – allowing them to create shared memories and shared experiences. It can become a lonely life for a child, a life where they may sometimes feel separated or isolated from the friends who continue to enjoy an untroubled childhood, and to take part in all the normal activities and fun which form part of our early years.
The words of Paul Newman, musing on what exactly induced him to set up that original camp in Connecticut, are striking and worth repeating here, although I am sure many of you are already familiar with them. He said:
“I wish I could recall with clarity the impulse that compelled me to help bring this camp into being. I’d be pleased if I could announce a motive of lofty purpose. I’ve been accused of compassion, of altruism, of devotion to Christian, Hebrew, and Muslim ethic, but however desperate I am to claim ownership of a high ideal, I cannot. I wanted, I think, to acknowledge Luck; the chance of it, the benevolence of it in my life, and the brutality of it in the lives of others, made especially savage for children because they may not be allowed the good fortune of a lifetime to correct it.”
I find those words very uplifting indeed, and words which underline in many ways the spirit which lies at the very heart of social democracy. Just as any fair society must ensure that wealth and assets are not disproportionately gathered into the hands of a privileged few, so it should also realise that good luck and bad luck are often unearned or underserved and can sometimes be awarded on a very indiscriminate basis. An important component of our social dimension and, indeed of our humanity, is the will to act together socially to relieve those for whom luck has not always been a benevolent or kindly force.
That is why all those involved with Barretstown should be very proud to be part of a global family founded on an instinct which should lie at the beating heart of any just and equal society.
Every year here at Barretstown, two and a half to three thousand children affected by serious illnesses receive holidays and breaks from the difficulties and limitations which have invaded and shaded their childhood. By designing events and programmes which challenge the participants, Barretstown allows the children to move beyond the restrictions and restraints of illness and to test their potential and possibilities, enjoying the present moment and looking to the future with optimism and hope.
For many children this provides an important restoration of a sense of participation, of belonging and of continuing to explore and push boundaries, despite the illness they are currently battling. It is also an invaluable opportunity to meet children in similar situations; children who may be experiencing similar emotions and worries to their own and with whom they can form a particular bond; as well as create special memories of a time of freedom and fun, a time where a lightness lifted the dark shadow that was thrown so suddenly and indiscriminately across their childhood years.
For the families of ill children, Barretstown can also provide an important space of respite and support at a difficult and testing time. Coping with a seriously ill child is uncharted territory for many parents, and can be a very difficult and often heartbreaking journey. And it is important that they do not make that journey alone, but receive the opportunity to meet parents in similar situations who can share advice, support and reassurance; all so very important when your child has been diagnosed with a serious illness.
The sibling camps also recognise the enormous toll that caring for a very sick child can have on the entire family; including brothers and sisters who may be experiencing fear and anxiety on behalf of their ill sibling, or a sense of displacement as family routine is abandoned, dynamics change and parental attention focuses on the sick child. The opportunity to regroup in a different place and environment can be invaluable – opening up new lines of communication, bringing a different perspective to a tough and challenging situation, or simply allowing a realisation that it is still alright to have fun and enjoyment despite the suffering their family has been through.
None of this, of course, would be possible without the many people who have, over the years, given so generously of their time, skills and experience – ensuring that Barretstown has continued to thrive and develop and to reach this important milestone. The medical staff, support staff, activity leaders, medical volunteers from many countries around the world, and of course the hundreds of Caras who give of their time voluntarily each year have, since 1994, been actively participating in a vision which began life many thousands of miles away in Connecticut; and has, like so many acts of generosity, reached across continents and oceans and boundaries, connecting all those involved by a great instinct of humanity and care.
I thank all of those who have contributed to Barretstown over the years and I wish them, and all the families who benefit from this special place, every happiness and success in the future.
Go raibh míle maith agaibh go léir.