Last weekend, I was with my sister. Sometimes weeks fly by and other times, it feels like so much can be crammed into those few days before we reach another Saturday.
As I sat writing this blog post last week, Stevie Wonder’s song, ‘Faith’ was playing in the background and Rose was drawing birds, while Auntie Kirstie was chatting about Songbirds from a book she was gifted by a friend a few years back.
In the last few weeks, we have tried to pull together as a family, while all grieving in our own way. Ben’s energy is forever omnipresent, but some days it feels like an echo of a life we once had, in a story we told ourselves.
He existed.
He was here and so each day becomes a day where I imagine him with me and us for every part of it. If there is something to laugh at, I can hear his voice and giggle in the ether and it warms my heart and breaks it at the same time.
We are still living in this strange and painful duality of life; existing between the conversations around Ben’s treatment options, his need to head home and the crushing reality of what that means now, moving with the grief of his parting, knowing we were just a few weeks from a second transplant. The impressing disappointment sends ripples through my heart every day and I catch my breath at the inability to be able to hold my son tight to my chest and never, ever let him go.
I fluctuate between wishing to God that I could turn back time, find some alternative, some miracle solution to avert the outcome, change the reality, alter the situation for us, for the girls. The unbelievable pain of Ella and Rose being without their brother is hard to watch and accept some days, knowing that we will never be able to come to terms with being without Ben and are barely scratching the surface with this emotional rollercoaster called ‘grief.’ Knowing that in days, months, years, a lifetime, perhaps, the repercussions will bounce back, reflect, astonish, crush and appear in the brightest of colours, the most painful to see and experience and there is nothing any of us can do about any of it.
Ella and Rose are doing admirably, though some days are better than others. Some days there are tears, certainly from our youngest about her complete love and sadness at losing her brother and Ella copes by keeping herself distracted as much as she can and singing her heart out at every possible moment.
Losing a child to cancer, or to any other complete tragedy, is something that is hard to put into words, but when I managed to brave it the other day and go to my first Parents’ Bereavement Group, I met the most beautiful individuals, coping with the greatest burden of loss and over and over, the same conclusion; we can reflect, distract, breathe through, talk about, create, establish, make a difference to others, go through the mundane of each day, laugh, cry, live our lives to the full … but always with the power and pain of the emotion we feel for our lost children, the loves of our lives who will never get to experience a physical life any further than their existence allowed.
At the end of the day, our lives can be filled by the most incredible things and experiences, but the hardest part is opening our eyes, knowing our reality and having to put one foot in front of the other, going on in our lives without that little human being, who was part of our home, our family, our life, our fun and our love.
It’s impossible. I tell you. Every day.
Some parents talk about wanting to die because a part of them has died with their child and some talk about living their lives to the fullest for the benefit of their absent child and the siblings they have left behind and everything in between. It’s not the easiest of paths, I can honestly say. I am grateful for the connection I have with my son and the girls and for the ability to keep myself busy, but once there is calm and quiet, I become fidgety and can feel the emotion building up, because grief is relentless and overwhelming and sometimes just knocks you over, without warning.
Until you have experienced looking in the eyes of your child as they are leaving this earth, knowing you are without any choice, that you are helpless to the circumstances and that you will never experience them growing up, achieving all you see your friends’ and family’s children achieving; that you will never ever have the utter joy of hearing their voice again, telling you they love you around all the planets, the moon and to infinity and beyond again, because it’s just what’s happened, you will never truly be able to understand the raw pain so many of us bereaved parents and families are just trying to cope with to be able to remain present.
Conversations are exhausting some days and others, a good distraction for a few moments. It’s very hard to just get on with the day, when life has dealt you a hand that means your world stands still and your heart stays broken. The girls keep me motivated and I do my very best to support them in these, sometimes unsettled times.
Over the last week, the fundraiser we set up – https://gogetfunding.com/bens-epic-christmas-boxes/ – is gathering momentum and currently stands at just over £3,000 which is beyond amazing. We are really hoping to smash the target of £5,000 to enable us to send out quality gifts for the three main wards and hopefully the Day wards of Portsmouth and Bristol, where Ben attended on occasion. A huge ‘thank you’ to all who’ve managed to share and donate for us, it’s been very overwhelming to see.
Last weekend I managed to record my first ever podcast, which I’ve called Family of Five, which can be found on www.podbean.com
If I can, I’ll embed the link in this post. On that note, if anyone would like to raise topics of discussion or would like to join me for a chat further down the line on any particular aspect of grief and creativity, your own journey as a bereaved parent, please get in touch with me by e-mailing: contact(at)bensepicjourney(dot)org.
Yesterday, Friday, I heard from a friend of mine, who confirmed there was a piece in the local newspaper about my recently published book, Hatch Match Dispatch and how Ben inspired the ideas for future books, but which also highlighted my desire to raise awareness for the need for more stemcell donors, as there are only 2% of people on the register, which is unbelievable. I was very pleased to know it had gone in the paper, so it was a positive end to the day.
Today, it is fifteen weeks, over three months, since our beautiful boy leaned forward to me for one last cuddle. I would do anything to hold him again, but I know that I have much work to do here on this earth first before I have that opportunity and he, with my two incredible daughters and hubby, remain my inspiration for helping others and trying to make a real impact, a real difference in the lives of those who have been touched by cancer.