Ben loved Batman. All through playschool it was Fireman Sam and that morphed into Batman, but it was the 1960s Batman, which is so cheesy but he loved it. He would dress up just to go to the shopping centre. A toy car from the 1960s Batman sits in the cabinet of our kitchen, which I love because Ben loved it so much.
My Mam told him the story of the Titanic and he oddly loved that too! Ben’s teacher even let him go to up to the top of the class to be the teacher and tell the whole class about the Titanic because he knew so much about it. It’s nice to think that Ben made his mark on his teacher before he ever got sick. He was diagnosed four months after starting Junior Infants, when he was four.
Would you believe that Ben’s teacher is now teaching his younger brother Jack! She says that he’s so like Ben in his thirst for knowledge and it’s so precious to us that she knew them both, and so important for Jack too.
Jack is now seven and it was bittersweet when he turned six – he was now older than Ben would ever be and that was really tough. Jack was only two when Ben died but he talks about him as though he remembers him. I remember someone said: “don’t forget the child that’s living in remembering the child who has died” and we always include Jack in the way we remember Ben. We have a Christmas tree that neighours planted for Ben and Jack switches the lights on every year.
There was something about Ben from the time he was a baby. He used to stand in my Mam’s porch blowing kisses and waving at the neighbours. From a very early age he had such a way with people. He brought fun everywhere he went – he lit up a room. He was cheerful and happy. He loved his family and he loved life – and he got life, he understood what was important. I have videos of him hugging the Christmas tree and I asked him what Christmas was all about and he said “family”.
When he was in St. Luke’s, he used to scoot in every day. He didn’t look like a child that was very sick, he would jump off the couches when he was in there! And one day he used a line from Home Alone on the porter Joe, who he loved. “Keep the change, you filthy animal”!
Ben’s tumour was rare and we were out of options for treatment here in Ireland. It just wasn’t responding to what was available so we raised funds to go to America for a trial that would see them take a biopsy of his tumour and treat his exact tumour. We had already had the worst conversation we could possibly have with our oncologist here – we were out of options but we weren’t out of hope.
It takes a lot to take a sick child on a flight to the US, where you know no one. His cancer was so rare that we knew we needed something different, we needed to give him a shot.
It was just the four of us in America (Michigan) and we had a lot of happy times because Ben wasn’t sick. We had a lovely day for Jack’s second birthday when we were there and we treasure those memories of just us, which we wouldn’t have had if we’d been at home. Ben loved hot dogs and we went to this one hot dog place every day and we’d get frozen yoghurt afterwards. We spent the August bank holiday at the lake, me trying my best not to get his Freddie wet! We didn’t have any concerns at the time that he was so close to the end – he certainly wasn’t displaying it.
But suddenly, we had lost control of the cancer because it had been over two months since Ben was on a chemo that was working for him, and we had to get home immediately. The Gavin Glynn Foundation and David Hall of Lifeline Ambulance Service helped us get an air ambulance home but only one parent could travel so Alan had to come home separately. That was terrifying – I was worried we wouldn’t make it home.
Ben didn’t want to go to the hospital, he just wanted to go home and we were blessed that people just swooped in and made that happen. Everyone at home was so happy to see him. To be honest, I felt silly that I’d resisted palliative care for so long but it feels like you’re giving up hope and giving up on your child. In the US, the palliative team meet every patient so they are part of the team from the beginning and it’s not such a big transition.
We had Ben home just over 24 hours when he died.
We want to continue to shine Ben’s light and so we’ve started Ben’s Boathouse. The plan is to offer a holiday home to families going through treatment or bereavement. We’ve had a couple of families down to stay already and it helps us more than it helps them. It’s by the beach, a place we used to go to on holidays with Ben so it’s a very special place to us.
Families on St. John’s Ward can contact [email protected] for more information.