The boys and I have settled really well in Copenhagen but a tiredness has also descended on me. I struggle with having a seemingly normal life again. Seb works in the centre of Copenhagen, Lucas goes to school and I go to work every day – this is a normal life, yet constantly I am waiting for something to happen and it is driving me crazy. I make plans for the future but at the back of my mind is that little nagging feeling that it’s too optimistic. I wake at night worrying about what will happen with the boys if something happens to me. I go through different scenarios, and because of what has happened to our family I always come back to the scenario where I, too, get a brain tumour, and it upsets me mostly for the boys as I envisage them having to go through all this again. And it isn’t that farfetched because we are already a family of novelty in what has happened to us so why not more? It makes me tired and upset and I lose concentration for a while. I definitely need to rest more when this is occuring.
This has happened to me before, and after Oscar’s death it was the charity work that would pick me up. It’s a legacy to Oscar and now Ian and Milo too, but more importantly it is the light of progress in what is an otherwise pretty grim outlook. The charity has already part-funded some amazing research that has been so successful it has led to biomarker testing to personalise NHS treatment, and we are funding a tissue bank making it possible to save brain tumour tissue for vital research. Knowing that we are making a difference with the work we are doing and with the money raised from so many fantastic supporters is part of how I keep being able to function.
The boys and I are so proud of the charity. It’s grown so much that we’ve reached a point where the trustees and I can no longer manage the workload and the opportunities that come up. We’ve put in thousands of hours of work and can finally see fulfilment of the vision we had for the charity when we sat around a kitchen table in the early days deciding how to go forward. If I’m being honest though, sometimes the charity overwhelms me. I need it to continue and not only for personal reasons, but also because we need to have better treatments for our beautiful children so they can continue to live full lives. I’ve spent so much time trying to decide if I should leave my job and focus on this full time, but in the end I realised that I need to have things in my life that are not about brain tumours.
I’m so proud that the charity has progressed so much that we’re now in a position to hire a full time Charity Manager, and I am even more proud to share that our first hire is also one of our biggest supporters, Phil Martinez. Phil was a teacher at the boys’ primary school so he saw first-hand what we all went through (as a family but also as a community) when Oscar died. He was involved with so many of our early fundraising events alongside Ian, who would be so overwhelmed to know that Phil has stepped away from 20+ years of teaching to take over running the charity. Like me, Phil has had personal experience with brain tumours – his mum died of a brain tumour so his passion for better treatments are perhaps only challenged by my own.
This new step for the charity means that I get some much needed rest and support whilst the charity continues to go from strength to strength as we come out of the toughest years certainly in my family’s life but also so many others. For me on a personal level it’s a little scary letting go somewhat and entrust the daily runnings of what has probably become my life’s work (I do love the drama of saying that) to someone else, but then again in real terms trustees and volunteers have kept everything running smoothly all the times I have been unable to over the past few years. So I choose to look at this as the biggest step forward I have taken in a very long time.
Never did I dare truly believe that we would reach this point for the charity – Oscar and Milo would of course both say “told you so” to me. And Ian, I believe, would right now look at me with such love and pride. We were a team and without him things are tougher than I can ever explain so to be able to see the work we started together keep growing and doing so well is a real win. The charity, like our boys, is thriving and for that I am eternally proud and grateful.
