“Even now some time after the passing of Adam, I still find I have days where I feel guilty, hurt, sad – everything really. Questions like could I have done more? I should have done more! Did I miss something? roll around my head from time to time. And although logically I know that I, and we, as a family did everything we could for Adam, the reality is that grieving takes time. There are days when I know the answers to the above questions but if I am having a bad day which by the way I have learnt is really ok! Then these are some of the thoughts that can present. We as a family talk about Adam all the time. He is never too far from our minds and as he adorns the walls in our house along with his sister Emma, it was easy to write this piece to honour him and all the courage he demonstrated right to the end.

Adam was born on the 9th May 1993 and was a healthy 9lbs and 12ozs when he made his entry into the world. However he was born with skin loss on his two feet and left hand, which is now known to be one of the key indicators of the more severe types of EB at birth. At 6 weeks old we took Adam home and although we were over the moon, we had no idea what was ahead.

I remember in the beginning it took three people to do his dressing – one person to distract him, one person to help hold him and me to do the actual dressings. Although as Adam got older his skin did get progressively worse, by that stage we had developed a system whereby we often managed with just the two of us. The dressing changes became an every day occurrence and could last anything up to five hours. Adam being Adam would try to put them off for as long as possible by suggesting that I should have another cup of tea or a chat with who ever may have called. This was his way of putting off the inevitable and I suppose having some say about his EB.

He walked at 12 months and I remember the house being like a marshmallow house. I had every corner covered in case he fell. Adam was great! He showed great resilience. He had no fear! At three years he went to play school and I will never forget the day the school bus came to collect him. I was the one who was a nervous wreck waiting for him to come home and he was absolutely fine. There wasn’t a bother on him. He loved it! . From there he went to a local crèche and then on to his local national school where he stayed till he was 10 years old. Adam had great fun there playing and hanging out with his friends who were fantastic.

When he did have a stay in hospital – which he hated by the way as it usually meant needles and blood tests; he would often be sitting there hiding his hands inside his shoes in order to avoid the needle! Myself and his dad would promise him everything to encourage him to allow the doctors or nurse to take the blood, but by god no amount of bribery would work! If he was tired and didn’t want to talk to you, he would pretend he was asleep. He was a great character! One good thing about hospital though is that he met up with another lad Stephen Quinn who also had EB. Stephen was a major Liverpool fan as was Adam and was travelling to meet the team in the coming weeks. Stephen ended up getting Adam all the teams autographs – which became his pride and joy!

During Adam’s short life we were approached to do a documentary about EB in conjunction with OLHSC. When we asked Adam if he wanted to do it, as it meant a camera crew coming into his personal space, his only question was “well will people know then what EB is about”? If so then yes he would do it which led to the now acclaimed series Our Lady’s. It was this selfless bravery that captured what Adam was about.

He loved everything to do with Bart Simpson and Jeff Hardy – (professional wrestler- World Wrestling Federation) and in November 2002 we as a family went on a trip to meet Jeff Hardy and see a match in Connecticut, USA. I remember me and his dad having a meeting with Dr. Watson prior to us heading to Connecticut to talk about precautions around the trip, as Adam was really poorly at this point. All Adam said was “she is not going to stop me going, she’s not!” He had a determined mind and neither E.B nor Dr. Watson was going to stand in his way of meeting his hero! When Adam did meet Jeff Hardy, they swapped personalised tee shirts. Adam gave Jeff one with a picture of himself on it and vice versa. That night when Jeff Hardy was fighting in his match, he wore the tee shirt that Adam gave him. Well Adam was so thrilled he couldn’t believe that his hero was wearing the tee shirt with his picture on it that came all the way from Ireland!

Sadly, this was to be the last major event we were to attend as a family and we truly have some lovely memories because of it. Adam health declined rapidly over the coming months and although in June 2003 we did see an improvement in Adam, we now know it to be the good before the bad. Continuing to cling to hope, our home continued to go under construction to allow Adam to have a purpose built bedroom down stairs to help him. So we had to temporarily move out of our home and did this with the help of Debra. Thankfully Adam did get to move into his new bedroom and was totally involved in the decorating of it! Sadly, Adam was only able to use it for two weeks.

Adam died on the 4th August 2003. It was the August Bank holiday Monday. After what can only be described as the longest day of my life, my little boy slipped away at 9.40pm that evening finally turning and saying “mammy I want to go” Looking back now he was the one who showed strength and courage as he set off on the next part of his journey. We stayed with him until 4am and then arranged to take him home. I remember thinking I wanted to do his bandages myself as I wanted to make sure he was grand.

The day Adam was buried, the sun was high in the sky and I remember thinking “god, he would hate this weather now.”

Loosing Adam has been the hardest experience ever and although I miss him every day, I feel like I am stuck between a rock and a hard place. I would sell my soul to have him back but only if he didn’t have to suffer! As a parent you have to learn how to live again. When he was alive I used to say there are not enough hours in the day and now that he is gone – the days can be never ending. After Adam’s death as a couple our whole routine changed. Up until then one of us was always with Adam while the other was running errands and keeping the house going. So when Adam died doing things together just as a couple was a different venture!

If I could give any message out there to those who have taken the time to read this, whether it’s because you are going through something similar or whether you have just been touched by this piece is to:

“Enjoy everyday and take one day at a time. Try not to look too much into the future. Concentrate on the here and now and tomorrow will look after itself”