Life has a funny way of just happening, whether we are in isolation or not; whether we are trying desperately to come to grips with a reality none of us want to see, or whether we are nonchalantly continuing our routine day after day, unaware of the way events can overtake us at any given moment.
Ben’s experience with cancer has taught us a lot about each other; about humanity, kindness, compassion, inclusion, love and loss. We, as a family of five, continue to watch the waves break on shore, sometimes daring to step into the water and let the emotion of all that’s happened overwhelm us. Other times, walking in the sand as the waves lap at our feet, aware of the great ocean and constant reality of change alongside us; and taking every step, yet hoping to keep our heads above water, as we forge ahead in our new, reluctant reality.
In the months after Ben died, we set about focusing on the Ben’s Epic Christmas Boxes, which we hoped to create again last Christmas and did, but in the form of Christmas vouchers instead, due to the Covid restrictions. We had such a great response to our fundraiser, despite the difficulties we know everyone was having. It warms our hearts to know that the kindness and support is there for us and others. It’s amazing, in fact!
I’ve continued intermittently with my Podcast, Family of Five over these long months and also my book of the same title. I’ve come away from the book for a short while, too, while turning my attention to my second comedy following Hatch Match Dispatch. I have found that the heartache, as much as it’s been a labour of love to write Family of Five, has sometimes been too much for my broken heart to manage. So, letting it breathe has been a really good thing. I’m now back to editing it and will release it into the wild in the months to come.
In 2020, I put together an idea that Ben and I had worked on in Bristol about Activity Books for children in Autumn of 2018. Having found an amazing illustrator, who understands the journey we’ve been on and having had some input also from other cancer families, this is something I hope to put in motion, too in the coming days and weeks ahead by way of a fundraiser.
In addition, another book idea to support those bereaved will also be heading out into the world by way of a fundraiser and I’ll update you here.
We’ve been toying with the idea of setting up a charity alluding to special books and boxes, essentially, but while we are still looking into it and not wanting to be slowed down, the idea of fundraising for the time being, seems the way forward, as we recognise the last year for everyone with Covid, has been hard financially and if we are planning to start a charity at all, we want it to be the right decision for Ben and for our girls and family.
At eighteen months to the day that Ben died in my arms, we launched a video we created for a DKMS campaign called #becauseofben. We’d approached DKMS, who have supported us since Ben’s Appeal for a stem cell donor in 2018 and chatted to them back in November 2020 about the idea of raising more awareness by putting a video together with one of Ben’s and our family’s favourite songs to accompany it.
Months later, it was ready and you can see it here: https://www.youtube.com/watch?v=ZnAySiLRXlA
We were told they had had 42 sign ups off the back of it and whilst that number is poignant when it comes to ‘the meaning of life’ from one of Ben’s fave books ever – The Hitch Hikers Guide To The Galaxy – we know we can do more. It has been a real labour of love to create this video; and I know I won’t rest until stem cell donation is something we talk to our loved ones about from a young age, because it’s so important and is something you can do as an amazing human being for someone else … while you are living! If we educate ourselves and others, there could be a real change in a positive way, I feel sure of it.
Our girls are both managing as best they can without their brother. They have us as their anchor and yet, they are both setting sail on their own individual paths in life, just gently and it’s wonderful to see and makes us both very proud.
Living our lives without Ben is hard and every day I reflect on all that has happened, how our lives were and how they have changed irrevocably. I see Ben in the faces of his sisters and their mannerisms. I realise now that our youngest is the same height pretty much, as Ben was and I look upon her and imagine how tall Benny might be now; whether he might have put on weight again or remained fleet of foot.
When I am out walking some days, I can see him running ahead of me, or feel him walking beside me, just quietly observing, thinking and pensive. When the girls are giggling, the air becomes electric and for a moment, he could be right there with them.
It is an unavoidable and palpable absence that stays with us. I really hope he sees it all, everything we are doing in our lives, though I do feel he’s busy some days, elsewhere, living in an alternate reality. I feel he’s growing up and having fun.
If the choice had to be, be here with us and be consistently dealing with cancer, or be without us, but be free, light, without pain … then I will allow my heart to break over and over to ensure that light continues, even if we have to be without him. Cancer is not for the faint hearted and some days, I could scream at the world for taking my son, but what good would that do? It would change nothing and if Ben could see me, he would be so sad to see his mummy so unhappy.
I have always felt that although this is not the path I would have chosen, if it is to be my path and our path, then I would prefer that Ben sees me trying, in amongst the tears, to be a source of light to others in this extraordinary situation.
So, we move beside grief, gently, but remaining full of purpose to be able to help others who find themselves facing a child’s cancer diagnosis, in whatever form that may take eventually. If I’ve learned anything, it’s gratitude for all I have, all I had and all the blessings yet to come.
Always sending love to all xxx
