As many of you will be aware, we set up a fundraiser for Ben’s Epic Christmas Boxes a few weeks ago and have been overwhelmed by the support and donations given. We surpassed our original target of £5,000 and made it to £6,000 in the last few hours, before it closed on 4 December.
It’s been a whirlwind of concentrated effort over recent weeks, with focus on particular ages and engaging content. While looking for quality items to be placed in these special boxes, I have felt very much as if Ben has been looking over my shoulder and guiding me all the way through. All the boxes are very much inspired by Ben and his love of Lego, comedy, Marvel and just having fun.
We are really hoping that the children on the wards where Ben was treated in Portsmouth, Southampton and Bristol, feel loved and supported by the amazing group of Santa’s Elves who’ve helped to allow this magical sparkle of light to come to fruition.
The reality of driving away from our home, just James and I in the car, with Ben’s beloved Leopard and a myriad of boxes, all decorated with ribbon and a Ben’s Epic Journey sticker, to distribute these gifts, has been an emotional experience.
It is just nineteen weeks today, that our son gained his Angel wings and we were left in a reality and life-changing situation no-one expected or imagined in our lifetime. It was honestly hard enough to step into the foyer of Portsmouth and Southampton; Southampton, perhaps a little harder, knowing it was where Ben spent his final weeks.
When we arrived in Bristol yesterday, it felt like a huge step to get into the lift of the hospital, listening to the gentle undulating tones of Peter Sallis as Wallace of Wallace and Gromit, bringing joy and feeling pain; wanting to bring kindness and gratitude, whilst feeling a huge void of love and grief, having had so much to look forward to at the beginning of the summer, to have it all taken away so soon.
I remember looking at James as we headed up to the top floor, feeling suddenly overcome with emotion and told him quietly, ‘I don’t want to cry.’
Actually, the hugs we were received from the amazing Nurses on Starlight, were so comforting. These incredible people support and care for families in very difficult circumstances; sometimes life-threatening situations and they do this with love and kindness every day, day after day and they do it with courage and compassion. They have seen many families celebrate and get through this journey and go on to live the best lives and they have also seen the other side of this experience; where families return to help, where they feel the intense loss of a child they treated, as the family descends into grief.
They are amazingly beautiful people and we feel so blessed that they looked after our Ben for us last year.
It was so lovely to see them and we caught up with one of Ben’s Nurses, who was and still is, very special to us.
So, last night, as I sat quietly at home beginning to write this update, the girls, having been looked after by my lovely sister on Thursday and yesterday, both settled in their own activities before bed, (Rose made a cardboard sleigh!) the truth is, there’s an unbearable silence without Benny, a huge, gaping void in our family, which is visible from every angle, every breath, every tear and every giggle.
I ache for him to pootle down the stairs and tell me, ‘Mum, I neeeeeeeeeed you.’ I long to hear his voice, his latest download, his review of the latest StarWars film, something he was desperate to see. I long to kiss and cuddle him. I miss him so much.
Ben always liked the idea of time-travel and I wish right now that I had a time machine, that I could journey back, even if I couldn’t change the outcome. A bit like the film by Richard Curtis, ‘About Time.’ I would just go back to take note of everything, to observe, to enjoy, to cherish every single moment. If I could just go back once more to remind him of how much I love him and the girls, if I could say it when they are all together, just once more and they can all roll their eyes, laugh and tell me how embarrassing I am.
You see, if it’s one lesson I’ve learned through all of this, it’s that life is beautiful. Life is fun, it’s harsh, it’s wilful, it’s fragile and precious and grief; grief is a shattered heart worn on every bereaved parent’s sleeve, in all they do and all they are. It’s also all the love you have for your children, for life.
It’s so hard to look at and imagine our lives, our future, without our Ben in the physical with us, but I know, I really know that he would be gently coaxing us on, ‘Come on, it’s time, you need to do this. You’ve got this. Love you, Moom.’ He’d be so sad to see us sad and that’s why, as hard as all of this is – and it is (even though something like these Epic Christmas Boxes are also so full of joy and love) – he inspires us.
He motivates us, gently, but firmly. He brings rainbows when we need a sign and dragonflies to bother his Daddy as he runs a train in the garden. So, if he can’t be with us living his own beautiful life to the fullest potential, we will live ours for him, with and for our girls, for our family, to continue his sparkle, his wit, his light and therefore, somewhere, I have to believe, he is still with us, in all we are and all we do.
Merry Christmas.
Love you, Beeps xxxxx
