I like to keep a low profile, I detest being photographed and I don't want to portray myself as a super-sufferer. I'm no different from anybody else, but I feel it is important for me to talk about Emma. I also do not want anyone to think that I am talking about her at the expense of my other children - Colette, who died at 12 of cystic fibrosis in 1992, Joseph, who drowned aged 19 in 1993, when the car in which he was a passenger drove into a river, or of my two surviving children Dermot (23) and Jennifer (12).
Nor can I speak for my husband, Joe, their father, who was absolutely devastated by the deaths of all these beautiful children. Watching Colette waste away and die was horrific, although she - not I - is the one who really suffered. I can honestly say that I saw God through my children, particularly through my daughters, through their suffering. Joseph's death was a total shock because he was completely healthy and was living his life as though he had another 70 years. He went out one June night with all the joys of summer and never came home. After gardai knocked on the door and told us they had found the car in which he was a passenger, we waited four days for them to find his body.
How can you describe what that was like? It was a living hell, total numbness, a feeling of floating, disorientation, disbelief. Sometimes I wonder if Colette was lonely where she was and called Joseph to her.
We are really fortunate to have Dermot, who is a very happy-go-lucky, jolly fellow with a marvellous sense of humour and enjoys playing guitar and singing, and to have our daughter, Jennifer, who is mature far beyond her years.
The last time we were all together as a family was December, 1991 (when Colette was 12, Emma was 14, Jennifer was four, Joseph was 17 and Dermot was 15) and I know one day we will be reunited.
But now I need to talk about Emma, because Emma's death is so recent and she touched so many lives. Despite having cystic fibrosis, she was such an achiever. Everything she tried, she seemed to master. Her primary school principal wrote: "I knew somebody special had arrived the day Emma first came to school . . . She had an eye that could see beyond eternity, and was not shy about using it. She was academically brilliant, musically gifted and had a natural talent for acting. So much talent and energy could only be enjoyed for a limited time. We feel privileged to have experienced it. Incidentally, we still feel the gaze of `that' eye."
She had a gift, I suppose. She was forced to spend long periods in hospital and missed a lot of school, yet she studied piano and achieved grade eight and she did her Leaving Cert from a hospital bed with canulas in her arms - how it hurt her to write the exam papers! She still managed to get an A-1 in honours English and went on to study English and philosophy at UCD. She went to Lyons, France for the 1997-98 academic year with the Erasmus programme. She brought a bag full of medication and a determination to succeed despite the cystic fibrosis. Emma was so motivated, maybe because she knew that she had a potentially terminal illness.
In her 21 years, she lived her life as fully as someone who survives to 81 years of age. While her Junior Cert was going on, her brother's body was missing for four days and she went in and did the exams anyway. That was her way of coping, to focus intensely on the intellectual task at hand. She had already experienced one death - that of her sister - and had learned death must never stand in the way of life.
There was an intensity to Emma's life, a feeling of getting the most from every day, that made her very special to those who knew her. She and I had comforted each other through the deaths of her sister and brother. She soldiered with me, even though she had to go through all the pain of having cystic fibrosis. We were pals. At 21, she was a woman and we talked about those things women talk about.
She was wise beyond her years and her friends tell me they used to go to her for advice. She had spent her entire life dicing with death - her own and her brother's and sister's - and because she was a deep thinker, she embraced death in a way that inspired those around her.
Emma - having lived a life of such trauma, for her to be so strong right up to the end was . . . how do I describe it? Her secondary-school principal wrote: "The words that come to mind as I think of Emma are: hope, courage, life, determination. I close my eyes and picture her face - a smile that transforms the paleness into a serene beauty. Her suffering did not lead to bitterness, or `why me?' attitude, but to a depth of character, of feeling, and of somehow knowing the unknowable.
"After visits with Emma in St Vincent's Hospital, I felt she had ministered to me. I experienced a lightness of mind and heart as if I had received goodness itself."
I don't want anyone to think Emma was a saint. She had her feet on the ground. One of her friends wrote: "Emma's appetite for life took many forms, whether it be an insatiable thirst for Bacardi on a night out, her hunger for knowledge, or indeed her ability to immerse herself in the latest, trashy best-seller. A heady mix of eloquence spiked with more than a dash of west of Ireland expletives! The best of both worlds! All of those who knew her were enriched by her."
We still feel Emma's presence in the house and her room is exactly as she left it. At her funeral, her friends carried to the altar things that were symbolic of her life, including the keys to her Toyota Starlet, given to her on her 21st, on which she had clocked up 1,000 miles; a cushion from her bedroom, to represent the comfort and love and warmth of her loving family; her textbooks in English and philosophy; a guidebook to the best Irish establishments in Lyons, including the pubs; her Debs photograph and a video of her 21st birthday party, which was held on October 30th, three months before she died.
Emma arranged the readings for her funeral, among them a reading from the chapter "The Faces of Death in Every Day Life" in John O'Donohue's book, Anam Cara: Spiritual Wisdom from the Celtic World (Bantam Press): "The mystical life has always recognised that to come deeper into the divine presence within, you need to practise detachment.
When you begin to let go, it is amazing how enriched your life becomes. False things, which you have desperately held on to, move away very quickly from you. Then what is real, what you love deeply, and what really belongs to you, comes deeper into you. Now no one can ever take them away from you."
Most of my adult life has been spent dealing with terminal illness and, unfortunately, with death - that awful word. What is death? A feeling of being robbed. You carry your babies, you bring them into the world, you walk the floors at night with them, you rear them and guide them, you dry their tears and put up with their tantrums, you usher them through the obstacles of the teenage years. I really, truly feel sorry for all those parents out there because nobody is without their cross to bear, and their cross is the greatest load they can carry at any given time. I do believe each one of us was sent here for a special destiny. Each one of us has something to do here that can be done by no one else. My destiny has been to love and lose all these children.
I can honestly say my faith would be an old-fashioned west of Ireland faith, which I inherited from my parents. I have never been angry. It is my daughters who have suffered and have had reason to be angry. What have I suffered compared to them? I don't ask "why me?", I ask, "why not me?"
People have asked me, how do you cope minute to minute, hour to hour, day to day? I live in the hope that one day we will all be united again as a family. In church, I sometimes ask myself, "what am I doing here?" I tell myself, "I am here because I believe", but I don't wish to nominate myself for sainthood. I want to see myself as a mother.
After all, there are mothers and fathers encountering death every day of the week. We've had a lot of young people die in Ashbourne. Like all mothers, I have learned that life and death are out of my control. We all think: "There but for the grace of God go I", and when you do go that way you have to accept it's your destiny. The greatest destruction in life comes from people having too much control over their destiny - too much wealth and power. You have to let go of your life, before you can live it. That is what Emma taught me.
I do cry - God knows it's good to cry - but I cry when I'm on my own. Her parting words to me were: "I know you'll be strong". And let's be honest: what can you do after this? Your destiny is out of your control. You either sink or swim and if you sink, you are good to no one.
Emma requested that no flowers be sent to her funeral and that, instead, donations be sent to St Paul's Ward, St Vincent's Hospital, Dublin for the setting up of a library for adults with cystic fibrosis, because she believed literature was a gift. As a teenager and young woman, she was often placed in a ward of dying, elderly patients, which she found very depressing. And as a cystic fibrosis sufferer, she would have benefitted from an isolated ward where the risk of cross-infection could be minimised.
The pace has been very slow in the setting up of this unit, even though it has been promised by the Government. Emma's wishes would have been for it to be up and running earlier.
I am treasurer for the cystic fibrosis national walk, which is in South Africa this year, from September 30th-October 10th, 1999. I am also chairperson of the Meath branch of the Cystic Fibrosis Association. I find that reaching out and helping others helps me cope. There is nothing we can do about yesterday, but we can do something about tomorrow.
People often wonder if their gestures of sympathy help, and I can say they truly do. It's healthy. The faith of others - in the form of Masses, cards, letters and prayers, has helped me enormously.
In conversation with Kathryn Holmquist (kathryn.holmquist@weblink.ie)
There are a few places left for the National Cystic Fibrosis Walk in South Africa - telephone the Cystic Fibrosis Association of Ire- land at 01-4962433.