It’s been a while since we’ve posted anything.
It’s been so difficult trying to process the feelings of hope we had after Ben’s initial diagnosis, the determination to find a stem cell donor, in the wake of our world being turned upside down and the feelings of courage, in spite of ourselves, knowing that Ben had relapsed last year and options were few.
It’s hard to put into words the emotions you go through in the loss of a child, but you only have to think about the prospect of living without one of your own and it is simply unbearable. Our children, all three of them, are our life blood, they are the loves of our lives and the reason we get up in the morning.
In the moment when Ben’s heart stopped beating and mine continued, knowing he’d grown in my belly and I’d birthed him, had his heart within me for a time; the only way I can put it is that the first breath without him took every ounce of courage and strength within me.
Grief is like a tidal wave, most will understand. Some days you feel like you are able to manage, particularly on a day when the sky is blue and the air is warm. It feels like you can put one foot in front of the other and know that you will still be breathing at the end of the day, knowing you made it. Then the greatest, most powerful wave will knock you flying, sending you smashing to the ground in a million shattered pieces; winded, breathless and disorientated in life. It happens once and in a split second, it happens again. You get up and get knocked over and the ability to breathe becomes impossible. Life has changed irrevocably and the sparkle of light, the dry witted, full of humour, endlessly chatty soul when it came to movies, trailers, Lego, Star Wars, Dr Who and The Avengers, is no longer with you in the physical sense. It is absolutely heart-breaking.
It’s so important, too, to recognise the impact Benny’s dying has had on our beautiful girls; Ella and Rose. Life is complicated enough and then there’s the loss of a sibling to try and come to terms with. Ella doesn’t talk too much about Ben at the moment; she tells me she sits with the emotion of it all and then continues to focus on her life, her hobbies and her friends, which I feel is a very teenage and actually mature response and she knows the support is there when she needs it. Rose writes songs, draws pictures, allows the tears to flow when she needs to about Ben. It doesn’t make it easy to deal with and the tenderness with which we respond to both the girls’ needs is paramount. Grief doesn’t disappear after a few minutes or months. This is here with us for a lifetime, because Ben is very much a crucial link in our family of five and we will love him for a lifetime and beyond.
So, what’s been happening in the last thirteen months?
As you will be aware, last year, we were overwhelmed by the response to our ‘Ben’s Epic Christmas Boxes’ fundraiser, raising an epic £6,000 in total. £5,000 of that money was spent on making the most Epic Christmas Boxes that we could for the children in the three hospitals Benny was treated in. We received incredibly positive feedback and are looking forward to doing it again this year, hopefully building in some Epic Christmas Ward Boxes and including Siblings and Parent Stockings, too. As you’ll understand, this year has been one that has been exceptional in a different way for all of us on the planet and so we are awaiting news from the hospitals as to what can be achieved this year. We’ll put a page together soon.
Just ten weeks after Benny died in my arms, I ran the Great South Run on a whim with a dear friend of mine, Jane – we also undertook a Stemcell Donor Drive a few weeks later for a work colleague of hers. Jane also kindly started up the DKMS Rocks page on Facebook for us in memory of Ben.
What we have found through experiencing grief of this magnitude, is that we all grieve and experience it in our own way; grief is unique to every single soul on the planet. We all also tend to gravitate towards creativity and kindness; for ourselves and for the ability to cope. Some days it feels like we are all managing; other days we catch one of us adrift and simply hold the space and give that person time and love and encouragement when they need it.
I have found writing has helped me a lot in my grief. I released my comedy novel, Hatch Match Dispatch this time last year, quite how, I don’t know. Ben had been suggesting ideas for the following three books while we were sat in hospital, the first of which I’ve started writing. I still find it difficult to believe he’s not here, even as I’m writing this.
Walking the dogs offers me my calm; wandering in nature, taking photos into the sun and seeing dragonflies, which seem to follow me around a lot! I find it really helpful, actually, chatting with my counsellor on a weekly basis in nature. It gives me the freedom to talk about the really emotional aspects of grief and every time, it feels like Mother Earth absorbs that sad, beautiful energy and turns it into something gentle and less frightening.
James created a garden railway over several months following Ben’s leaving us. It has given him solace and a place to connect with Ben. He and Ben share a complete love of trains and even though it’s different now, when James wants time to just ‘be’ then the shed and the railway is definitely his happy place.
James has also got involved with the Drumathons run for DKMS and the Youth Cancer Trust, organised by our friend, Joe Musker, something he’s really enjoyed doing – especially as a seasoned Drummer!
During Lockdown, I decided to run 120 miles to raise money for DKMS, which I duly did and it brought up my fitness tenfold! Unfortunately, as time has gone on over the summer, my fitness has headed back down again. However, I am now walking a ‘Virtual Camino de Santiago de Compostela’ for DKMS – 480 miles and details of which can be found here: https://www.justgiving.com/fundraising/ginny-walker5
On what would have been Benny’s 13th Birthday, we went ahead and made a cake and played ELO’s Mr Blue Sky. Rose decorated it with an Iron Man fist and his name and we sang and Rose helped Ben blow out the candles. When I returned to the kitchen to cut the cake, I thought back to the last two birthdays for him in hospital and the birthdays when he was mini. He loved birthdays and Christmas. I fell to pieces in the kitchen and we all had a slice and thought of our beloved son and brother.
Unless you have lost a child, it is very hard to truly comprehend the load on your heart every day, knowing that life will never be the same and that the future you had taken for granted for your children, isn’t the one you had hoped for. We keep in contact with and hear other families’ stories and it’s so wonderful to hear all the positive news of overcoming and managing; we raise a glass for those quiet victories. Then there are the stories that no-one wants to hear and we cry with those families who find themselves on a similar path, because we know exactly how that new reality looks to a newly about to be bereaved or bereaved parent and all we can do is send them love and courage.
When I think of all that Ella and Rose have coped with and are still striving to manage in their childhood, I am proud beyond words, just as much as I am heartbroken for them. Yet, they show me and James every day that they share that same determination Ben has and had, that same sparkle of light, that same tenacity for just trying and that gives me huge courage.
I started a Podcast – Family of Five on Podbean dot com earlier in the year. I have three more podcasts to add, which I hope will go up in the next few weeks. I talk about Ben, our family’s experience through childhood cancer, about relevant topics and how creativity can help in grief.
In June, I signed up for a Screenwriting Course – I know – don’t ask! – which was twelve weeks of full-on commitment to the cinematic written word and I’m pleased to say that today I have finished a very, very rough first draft of something really special!
In addition, Family of Five, my memoir, is back from the Editor and I hope to be editing that, too in the coming weeks.
Tonight, we attend the very first Virtual Gala for DKMS, something we are so proud to have been invited to.
We will always be advocates of stem cell donation and will always do our best to highlight the need for stem cell donors. There are only 2% of people on the register in the UK and that just isn’t enough. If you imagine how few people that might be compared to the amount of people who are diagnosed with a blood cancer every year. A donor who matches with a recipient must be as closely matched as possible for it to be successful, so the more people who are willing to donate their stem cells to someone in need, the better. It is similar to giving blood and is the greatest act of kindness for a family in need, believe me.
My hope is that one day, the discussion around stem cell donation will be the norm until cancer is kicked into touch. I hope that millions more will sign up, that the education around it will be improved ten-fold and that eventually, becoming a stem cell donor will be recognised as the right and kind thing to do as a good human citizen and might even one day, become an optout situation, like organ donation.
Love and light to all xxxxx