Our Saddest Days

May 2000 This page is the hardest of all to write, so much so that I cannot as yet think of a title for it. To describe how Gary's passing changed our whole world as we knew it is very difficult. As we have said to many people who knew us " if we were to spend a whole day trying to tell what life without Gary is like you still would not know". That terrible heartache and longing to see our precious Gary is eats us up and so difficult to bear at times but its Gary's love he had for us as his family that helps us to live on and remember and honour him each day.

Friday 21st May 1999 was like any other Friday for us. Gary and Stephen went to school. I went to work and Mom with Lisa's help did her work as usual. Later that day I picked up Gary and we went and played two games of snooker. We enjoyed those games so much and for some reason Stephen did not come with us that day. Later we came home and we had our tea together. Afterwards the boys kicked ball on the street until it was time to go to Tae-Kwon-Do.

Gary had a good night at Tae-Kwon-Do. Gary and Stephen came home and after a quick bite to eat out they went for a quick kick about. They came in and Gary sat down and ate his favourite chocolate cake. He watched "Brookside" (a t.v soap based in Liverpool) and off he went to bed. His mom always tucked him into bed and at least twenty times a day he told her how much he loved her. He always wrote for a while each night before lights out, his pen in one hand and his watch in the other. For those that knew Gary rules were a big part of his life and if you said lights out in thirty minutes he turned them out exactly thirty minutes later.

We have been asked so many times what did happen to Gary. How can I say what happened I can't at this time. We felt it's not a topic for conversation but a private moment for us his family and closest friends. He did not take his own life which many people who have browsed through our site have thought because of problems he had with bullying. My heart goes out to any parent who must live each day if such did happen to their precious son or daughter. For those who knew Gary he loved life with a passion never eating something out of date by a day or even entering a room that had been freshly painted. He enjoyed the daily simple things in life and never asked for anything. Gary loved his family first and foremost and loved his room his computer, football, all the sport he could have, his Match magazine and the routine on Thursday with chips from his favourite chipper the "Roma Cafe" in Wexford town (Ireland).

I thank all those who have browsed our site and please think of Gary from time to time. Life is a precious gift which can be taken away so easily. I don't like to give advice for I can only see life through my eyes but parents never think you can't hug and kiss your children for no matter how old they become they still are your precious family and its what life is about. The love Gary showed us is something which shall help us live in this world without him. As each day goes by we gain in strength the belief that he lives on in each of our lives and is helping us to cope. Gary has become our guide and we are richer for that. It goes without saying we wish things were as when he lived amongst us but as I said that was beyond our control and if as some books suggest " he had reached a state of perfection " to which God demands then Gary was certainly ready . Good luck Gary from Mom, Dad, Stephen and Lisa. We miss you and love you dearly.

May 2001It has taken me quite a while to write a page or a thought for May this year. Perhaps its a sign of life taking on some " normality " or of coming to terms with the passing of Gary and the other things in life now take up my time more. I know it shall never be the way it was when Gary lived amongst us and how could it. To loose a son as Gary, left a world so unknown to me and so awful that we often look back and wonder how we have managed to survive and how we continued living. If I was told two years ago any of this should come about I know that I would have felt insulted and I would have felt the memory of Gary betrayed. But the most normal thing in life is to continue to live and do all the things it takes to do that. Stephen and Lisa are a great reminder of Gary and each have a part I see Gary had. I shall always be grateful for their help in coming to terms with Gary's passing.

Tonight as I kicked football with Lisa I paused for a moment from time to time and remembered how often Gary kicked ball there. Those same boards the ball bounced off hang their, the same trees still grow, the same faces pass by and indeed the same odd cranky neighbor who objected to the children playing on the street. If only they knew the meaning of life that has been shown to us perhaps some things would be so much different but I know it was us who had our precious son Gary and for that we would not swap the world and our life now.

Gary shall have passed two years in a couple of days and I look back on how quickly time has passed. How true that which is sometimes said " how short life is and how important it is to live your life and enjoy what has been given to us".

As I start to write this month's words I am afraid as always to check back last year's thoughts, time marchs on for us not always the way we would like it to but I do know without the challenge each day brings I fear I would drown in an ocean of dispair and depression.

It is coming up to the third anniversary of Gary's passing on the twenty second of May. We have wondered what we might do to especially remember Gary at this time and we have decided to try to publicize SUDEP that which caused Gary's passing. SUDEP stands for Sudden Unexpected Death Through Epilepsy. It is a Fact people can die through epilepsy, I say that not to frighten anybody but we have met people who like us were not aware of that.

Below is an e-mail I sent to our National Society for Epilepsy " BrainWave". I think reading this mail you will gather our annoyance at the lack of knowledge on this subject and to the fact that most medical personel do not tell you unless you ask " Can You Die Through Epilepsy ". We shall tell our story to our local media to highlight SUDEDP NOT TO HEIGHTEN FEAR ABOUT EPILEPSY but rather increase public awareness. This is how our son Gary died. We do not lay claim to knowing fully about this subject but only that which we have read or since told.

Dear sir/madam I wish to congratulate you on your site and its full and very informative content. We write to you as parents who have lost our son through SUDEP. We attended the seminar in Dundalk in the year 2000. A brilliant seminar and very informative and I even read on your site a couple of suggestions came from that meeting with the parents bereaved through epilepsy.

Our son Gary died on 22May 1999 aged fourteen years through SUDEP. He had two seizures one two weeks before his death and the second causing his passing. Gary was never diagnosed with epilepsy but that it what was written on his death certificate which we now know was SUDEP. At that meeting a lot was discussed with a lot of debate on different matters. One of the chief concerns voiced by a large majority was the lack of information firstly known by the general medical professions in this country and secondly criticism of the professionals who know the information but are economic with the truth when it comes to the fact that you can die directly from epilepsy. I notice in your frequently asked questions you neglect to include that important question " CAN YOU DIE FROM EPILEPSY ". Are you afraid to put that in? surely that is the most relevant question and it warrants a truthful answer. May I suggest an answer to that question be at least be answered by printing the statistically known deaths as a result of epilepsy directly or indirectly. Most people would not be too alarmed by that we see it written for almost every other diseases which can cause death.

Your article on SUDEP tells how you reassure people that you can live a full and active life and that is indeed the case. But until diagnosis has been made and medication given if needed especially in the case of young children we as parents have that right to be fully informed of all the facts. Those frequently asked questions should be answered and that question we may fail to ask should also be told to us. . Only then we as guardians of the young can decide on how precisely we wish to monitor their daily and especially night life during the sleep hours.

Your article talks of how bereaved parents through SUDEP feel cheated because they were not told all the facts. Yes very cheated and very let down and unforgiving towards those guilty of glossing over that knowledge. We know how many die on our roads it is highlighted every day of the week in the media yet it does not lessen the number of drivers who use our roads, it may even cause people to be a little extra careful and possibly save lives. Christine and I never would have known you can die in your sleep from epilepsy. While we cannot watch them twenty fours a day we can be more vigilant, simple changes to sleeping arrangements alone in our case may or may not have saved Gary we shall never know but he would not have died alone.

Finally if I may say it is only recently we have been able to search once again for the facts about SUDEP even knowning Gary died from SUDEP took so long to accept. After Dundalk we got an invite to a further meeting. We received the invite just two days before it was due to take place. We could not attend at such short notice and we have not heard from you since. We never got any feed-back promised from that meeting in Dundalk in 2000. If there is any information would it be possible to get a copy of it.

Soon it is our Gary's third anniversary and in memory of Gary we shall be publicizing in the media what happened to Gary and the hundreds who die through SUDEP. We shall tell our story of how our perfectly healthy son Gary who was never sick a day in his life went to bed one Friday night and never woke up. If you can help us with the most up-to-date figures or any information on epilespy and SUDEP we would be most grateful.

May we thank all those in your organization who work tirelessly to help those with epilepsy and also who help the bereaved parents through epilepsy and we look forward in the future to helping promote your work in whatever way we can.