I can’t believe that tomorrow you should be four years old. A lot has happened in your short life and the one that followed. Most importantly to you is that Holly and Barney are happy. Holly still talks about you all the time. [···]
I write in my book less at the moment. It’s not that I don’t have anything to say, nor that my thoughts aren’t whirring all the time. It’s only that I am aware that sometimes we share those thoughts via our blog post and these days there is nothing much new to add.
Tomorrow marks another milestone for our family. Oscar lived for 499 days. Tomorrow Barney will be 500 days old. I met a bereaved mother once who told me she had an image of her daughter in a boat out at sea, slowly bobbing further and further away from her and I can recognise that painful but true inevitability. Oscar dying was so inconceivable, so unlikely and so sudden. We have had incredible support from many different sources since he died, and one of those has been Oxford University Hospitals NHS Foundation Trust. They have a genetics study underway. It’s an expensive process and they have to put together a business case for each family that they put through the study. They have to believe that they will prove a positive outcome – that is to say, that they can prove that there is a generic reason behind whatever the situation is that they are exploring for that family. They took us into the programme for a different reason. Nobody believed that Oscar had a genetic flaw or disposition that meant that his life was at risk. But the team wanted to be able to rule it out for us. That was a really kind gesture for them to make.
From the very beginning I knew that I needed to write. Not for a blog but for David and I and for Holly and Oscar. For us because the thought of feeling the way we did in those early weeks for the rest of our lives was unbearable and inconceivable and yet we could not imagine feeling any other way. I wanted to write down the journey so that when we were having a dark day 2 years, 5 years, 10 years down the line, maybe we would be able to see for ourselves that we were in a different place even if we didn’t feel that that was the case. I needed to write for the sake of Holly so that she would know that she was the rock, the constant that is in our life even when she’s being a teenager before her time. I needed to write it for Oscar because I needed a place to catch my thoughts. Now maybe it’s for Barney too to understand more about the brother he never met. [···]
I still cannot believe the experience that we had last night. I went to The Oxford Union to watch David speak. I couldn’t resist taking a photo of him (so uncool) as he signed their guest book… alongside such names as Michael Eavis, John Major, John Kerry, KD Tunstall, Kate Beckinsale and Jerry Springer – all of whom are on the current term card.
David was there talking about IBM Watson but the opportunity to do that arose because it is the role that he chose to do on his return to work after Oscar died. It reminded us once again of the doors that Oscar opens. During the Q&A, The President of The Oxford Union asked David to talk about Thinking of Oscar, because he knew that David’s belief in Watson is driven by the mission of the charity. David was speaking to a full house who had been engaged and responsive throughout but you could hear a pin drop when he told them about Oscar and what we are seeking to achieve.
Last year I was introduced to a father who told me about how his daughter had spent months and months in Great Ormond Street Hospital in London being treated for a rare cancer. We were exchanging stories about our experiences with our respective children in hospital and then went on to discuss the work of Thinking of Oscar. When I mentioned the Vein Finders that we were in the process of putting into the Oxford Children’s hospital and how they would have been such a help for Oscar with his blood tests and cannulations this other dad told me how he had never heard of the technology and how his daughter had had hundreds of procedures and that the AccuVein would have made such a difference to her. [···]
I’ve been putting off thinking about this more than fleetingly for weeks. Oscar should be starting pre-school this week. Holly would be beside herself. In her best patronising older sister tone she would have fully prepared him for his big day by now and his red and grey uniform would be lined up ready for morning. Instead it’s just the first week of the summer term and Holly is focused on her own world. [···]
David and I were talking last week about various fundraising ideas. We were discussing whether we might be able to get a couple of places on Prudential Ride London, a 100 mile bike ride… brilliantly suited to DC, who took up cycling after Oscar died and loves it as it gives him time to think about Oscar. Less so for me as I’ve not riden a bike in about a decade. But it would be amazing to do it together and a great awareness raising opportunity for the charity. Some friends are doing the Three Peaks in aid of Thinking of Oscar later in the year and we were working out whether one of us might be able to join them in that quest. David is going to be doing his first Olympic Triathlon this summer and of course we have the Thinking of Oscar squad, all participating in the same wave of the Blenheim Palace Triathlon on Sunday 5th June 2016. Last year 49 friends and family joined David at the same event and collectively we raised more than £60,000. It was an amazing day, a fantastic atmosphere and very special despite the chilly damp weather. [···]
Well we survived another Christmas and New Year. We were dreading them this year more than last year as we knew how tough they would be. In the event, contrary to the year before it wasn’t as bad as expected. Not because it was any easier going through Christmas without Oscar. It wasn’t even one tiny bit easier. It was just the same as last year. But the feeling was not a new feeling. We knew what Christmas without Oscar felt like. So when it came we recognised it. As usual Holly and Barney helped too. Holly because she was so very excited and Barney, too young to even grasp present opening, but helpful just by being him. [···]