Toni, our eldest son and only child at the time, died just after his first birthday. My husband, Willie, and I went on to have two more children, Ellie and Mikey. Mikey was killed in a road crash eight years ago when he was a passenger in a car on his way to the local youth club. He was 17.
Before that happened I had gone back to college to study psychotherapy and counselling because I was fascinated – and often not in a good way – by the extreme, intense and often soul-destroying grief we had experienced following Toni’s death.
Fifteen years ago I started as a volunteer with the Irish Sudden Infant Death Association. I was soon offered a job with the charity, firstly on a part-time basis but this became full-time when we realised the needs that were out there. Now I am the national director of bereavement.
The charity was set up almost 40 years ago to offer support to parents who had experienced the dreadful loss of a child. And over the years the board went on to establish the National Sudden Infant Death Syndrome [Sids] Register to carry out research into the cause of Sids.
But as I began to develop the services we were providing, I started to receive calls from parents who had lost a child due to causes other than Sids and they didn’t know where to go for support. It became evident that there were no services out there for suddenly bereaved parents, so we extended our remit to support parents who had lost a child suddenly, regardless of the cause.
The board also agreed that the name Irish Sudden Infant Death Association did not accurately reflect the support we could provide; so, after much discussion, we all agreed that FirstLight was the name that best represented the ethos and vision of the organisation.
There are two full-time and one part-time staff members in the main office of FirstLight, and the same in our research arm, which is based in Temple Street Children’s University Hospital in Dublin.
Varied work My week is very varied as I never know who is going to contact us for support, so last week I had three individual sessions with parents on Monday. I also interviewed a new therapist for our database and contacted two newly bereaved parents to arrange a home visit, map out what is ahead of them, and help them to normalise the grief they are in. It's often difficult to answer calls straight away so I catch up on calls for the rest of the day.
I also received a call from a creche about arranging a talk with staff, as a child had died in their care. And I spent much of the day organising our first professional conference in Waterford and our family event, which takes place in November.
Over the next few days I did a few home visits around the country and had to section off some time to take calls from the office and to answer some of the queries from our 24-hour helpline. I also interviewed a therapist who would like to work with us and went to see the manager of the hotel where we will be holding our family weekend.
On Thursday my colleague, Louise O'Sullivan, and I met representatives from Embrace Farm, which is a support service for people who lose a family member through a farming accident. Then I went back to the office to see parents and catch up on phone calls. I have published a booklet called I am not mad, I am just grieving, and Sabina Higgins Coyne is launching it this month so we are preparing the PR for this. It is a very exciting time for us.
On Friday, after some phonecalls, I went to Portlaoise to facilitate a residential support group which goes on from 7pm until 9pm. The group stayed over and we worked all day on Saturday until we finished at 4pm. This happens only once a month, but it's an important and worthwhile development for our bereaved parents and families. I have spent many years developing the framework for these weekends, and the friendships and peer support, as well as the professional guidance and journeys that the parents experience, proves that the residential workshops are an invaluable source of support for the parents who choose to take part. Normalising grief I am always aware of the grief and pain that I see each day, but it is not my grief because the child has already died, and all I can do is assist in any way I can to normalise that grief.
Although I carry the hotline 24/7 and I never can tell when it is going to ring, I try not to focus on it: if it rings, I will take the call and deal with the fallout as best I can. Then I will follow up and set up supports over the following days.
The most difficult aspect is meeting families who also have other issues to deal with along with the death of their child. It’s as if they are saturated with so many things life has thrown at them that they feel helpless. Sometimes there is no space left within themselves for grief.
The best part of my job is seeing parents who have been destroyed by grief investing in and enjoying life again. Life never goes back to the way it was, but they can learn to live in a different way while never forgetting and never getting over the loss of their child, just learning to live with it.
Essentially, I tailor a support service that is specific to each family’s particular needs.
I know it probably seems strange to say but I really love my job. I share my own personal experience with families, and this is not to say I am worse off than them but more to let them know that I have learned to live with it so they can too. Mostly, I try to give them hope again.
See firstlight.ie or call 1850 391 391.
Out of hours
I don't get many actual days off, to be honest, as they always seem to be mixed with work. I have got calls from labour wards, even on Christmas Day.
But when I am not working I grow all our vegetables and love to have time to weed and harvest whatever is ready. I always try to get to the cemetery to make sure everything is okay; this is very important to me. I also like simply to catch up with my family and chill out.
The national bereavement conference, which will explore the impact of a sudden death of a young person, will take place at University Hospital Waterford on Thursday, October 15th, from 10am to 4pm. See firstlight.ie/ national-bereavement-conference/
