Falling Into Grief

This was never the situation we expected to find ourselves in back in summer of 2018 and yet, here we are, a family of five, made into a physical family of four, in the loss of our beautiful boy and brother, Benjamin.

I wanted to write about this part of our journey, as it is a continuation of Ben’s Epic Journey and losing Ben, doesn’t mean he will every stop being part of us; part of our family of five. I don’t want to forget a single moment of the beautiful life we had together and the privilege I have found as a parent, being Ben’s mum.

Those last few days in Piam Brown felt intense and were full of conversations, which were becoming more and more urgent. I kept hearing that the team needed to get us home and all the while, we were hoping for at least a few weeks with Ben, building some memories for us all, especially for our girls, Ella and Rose. This was all following the understanding there was no hope for his recovery, as the Leukaemia had mutated yet again and was resistant to the chemotherapy drugs that he’d already been exposed to the previous year. This is apparently something that is always tricky to manage. After the journey we’d been through, it was the most brutal of conversations to be told that we had to accept.

Ben was so upset that we were heading home, because somewhere inside, I feel he knew that miracles were looking a little distant at that point, but we remained positive, telling him it was our intention to turn it around. I was always looking at the positive, in spite of my greatest fear staring me right in the face. Both James and I told him how incredibly proud we were of him on that Friday evening, as we were packing up everything from Room 6 and taking it to the car and I remember him just looking into my eyes, leaning into me and saying nothing. There were no words needed, because it was a feeling of complete love and that was it, in the most profound sense of the word.

The previous day, I’d found myself kneeling at Ben’s bedside. I was gifted a Latin prayer to say over him, calling in the Angels to allow him to feel healing energy. I spoke it over him again and again as he lay there with a temperature, shivering under the blanket, even though he was so hot to the touch. I found myself thanking him for being my son. I described the joy and privilege I’d felt as a mum being pregnant with him and the excitement I felt for his birth. I described him being born at home in the lounge to Blondie, ‘Dreaming’ and the moment I first held him in my arms. Then, the moment his big sister kissed him ‘hello’ on the forehead. He would always give me a wry smile whenever that song played on the radio, because I would always remind him that was the song he came into the world with and it embarrassed the heck out of him. As it turns out, it was also the song he was carried into the Chapel to on the day of his Celebration of Life.

Children seem to experience the worst of situations in a different way to adults, one that is deeply affecting, but also more of a ready acceptance of the situation when it comes to the nitty gritty, before letting it go, quite possibly because they have not lived long enough to be fearful of such an experience that may be coming. They don’t dwell so much on things, at least, that wasn’t what we saw from Ben.

When we arrived home, I couldn’t get his feet into his shoes, so I took my trainers off and he slipped his feet into them and by some miracle, managed to stagger out of the car and straight up the steps into the house behind James. I sat in the car in silence for a moment, feeling a tidal wave of emotion building up in my heart.

I didn’t see him come into the house; James brought my trainers back down and we grabbed a few things, his precious Macbook and headphones being one of them and headed straight up. My sister, Kirstie was in the kitchen with the girls; they were bubbling over with happiness that we’d got home and James told me he’d just headed straight up to his bedroom to collapse in bed.

He was hot and with everyone else settled, I spent the most difficult night of my life, desperately trying to help my son.

One thing I will say about my incredible boy, is that he never ever complained; not really. Not through the gruelling chemo, the conditioning, the nil by mouth, the operations, having a central line or a tube in. The tube was probably the most upsetting for him out of everything he endured during treatment.

I have always been a soul whose desire is to make difference, only this time, I had to observe my son letting go of this world, unable to make the difference for him that I so wished I could and instead, watching him stepping into a new adventure all of his own. It was hard. When he reached for me in those final moments, all I could feel and offer was complete love.

The weeks following have been empty and each morning, it’s been a relentless cycle of waking, but not wanting to wake up, because then you have the crushing feeling in your heart that life will never be the same again. So, we open our eyes, we sigh and wait for the overwhelming sadness to hit. It does.

I have my own little routine about how I get up, where I wander before heading downstairs, to start another day; one more day further away from him, the memories, the love and it’s unbearable.

Grief is like the full existence of life; it’s love. It’s all your experience in life, from birth to death and every wonderful and devastating moment in between. It’s crushing and painful; it’s cruel and harsh to the depths of complete despair, broken only by moments of drifting, of dreaming, of wishing, of remembering and then trying to focus on something positive to get through the next minute, next hour.

I find myself looking back at photos, little videos when I can manage it, treasuring the beauty and the feeling of those moments before; well, before cancer. Even within the cancer journey, we have always found humour. Humour and laughter is very good medicine for the lonely and distraught, if you dare to let it in, it can be a lifesaver in itself, at least metaphorically speaking.

There is truth in the saying ‘you don’t know what you’ve got, ‘til it’s gone’ and the void that losing a child leaves, is something that is so profound, so life-changing and heart-breaking, it’s a difficult one to put into words.

We have all tried to pull together after Benny earned his Angel wings. We decided we needed to get out and went to a beach; one we’d never been to with Ben and not too far from home. A dear friend of mine, who’d run the marathon for DKMS and Benny earlier in the year had started DKMS Rocks on Facebook and we decided to look for pebbles while we were at this beach.

Bracklesham Bay is now our go-to place for beautiful sunsets and poignant strolls, while the dogs run in and out of the sea, the girls sit or play on the sand and James and I are lost in our own thoughts, trying to even begin to reflect on all that has happened, while staying present for our girls.

You find yourself succumbing to grief. It steals your appetite and your sleep. You repeat patterns of the life you had before, but nothing seems to feel right; not completely, because you are missing part of your tribe. It all just feels wrong or broken, but somehow, you are still functioning. Don’t ask me how. I find the social aspects of life too much some days and would rather crawl under a duvet. Thankfully, I have two bright and determined girls, who will me from my slumber and keep me motivated; and when I feel lost, my husband tells me to write; probably the greatest, most loving advice he could offer and still, he is my rock and I am beyond grateful for him. It’s very tough, even for the strongest unit of five and four to manage, but we’re here.

The girls are doing the best they can and are definitely the light in our days of sadness and darkness, because however hard it is for all of us, life is carrying on and at a pace, except we are doing everything in slow motion, in shock and disbelief at what has actually happened to Ben and us as a family.

You can see why grief tears families apart and how it can pull families together. Grief is all consuming and unrelenting, because it is all the love you feel for your child, a loved one, a life and when that is forced to change, you pour your love into your children, those here and gone and for me, creativity.

We took ourselves away for a couple of weeks straight after Ben’s Celebration; apparently it’s quite a common thing to do. What was incredible, was that just a mile or so from where we were staying, we caught sight of a sign that said Ben’s Farm Shop. James asked me if I’d known that when I booked the property and I’d had no idea. When we drew up to the cottage, there was a plaque outside which was Ben’s birth year and then the twin bedroom actually had three beds, so I placed Leopard on the third bed and cried.

Most of our fortnight away was spent just managing. If we felt like staying put, we stayed put and if we felt brave enough, we headed out to a local village or town and just walked somewhere new. It felt good to be invisible for a short while. We went to Totnes and I could see there were more Ben shops. We also passed a funeral place, where a beautiful poem called August by Mary Oliver was in the window and it caught my eye. We lost Ben in August and it just broke my heart to read it. Everything began to feel real and I didn’t want it to be real. I found myself just sobbing in the streets. I felt like I had a sign on my forehead which said ‘I’m a mum who’s lost a child and I’m lost, myself.’ As I cried, my eldest daughter tried to comfort me, saying little, but putting her arm around me. It was just what I needed, though I couldn’t speak.

When we were in Brixham on our Wedding Anniversary, it had been tough day, as Ben loved to celebrate birthdays, Christmas, any happy occasion and here we were on the day that Ben was supposed to be starting his treatment in Great Ormond Street, standing overlooking a harbour, feeling lost and sad without him.

It had rained that day, but the sun was trying to break through the clouds and suddenly a rainbow appeared and it was truly beautiful and kept growing. There were people around at the end of the afternoon, but it was peaceful. All of a sudden, There are Places I Remember, a beautiful song by The Beatles played loudly from a pub. My sister and used to sing that a lot in the car when we were children ourselves, when our Dad would visit us once a month when we were little. When the song came on, it was as if Dad was saying he was with Ben and it was very overwhelming and left James and I feeling we’d been given our Anniversary gift from Benny in the Sky with Diamonds.

Grief has a strange duality to it, which you live every day. I want to be at home, as Ben’s energy is here and his things surround us, but equally, the pain of him not physically being around, is an unbearable feeling that leaves me wanting to get out for a time every day. I feel sort of ok and completely broken at the same time and that is just how life is now; duality.

Grief is relentless and means even the most everyday, mundane things you need to get done, can feel impossible some days. I couldn’t stand in a supermarket without crying in the first few days and weeks. Even now, I am not keen to go shopping, it’s just too much.

Every Saturday, both James and I wake up and feel terribly upset and low. On Saturday afternoons when we have been in the house, we have sat in Ben’s room at the time he passed and have just been in the emotion of it all, remembering and reflecting. Yesterday, though I was with my sister and James messaged me at the time and my sister and I cried together.

Then you find the moments where you laugh and giggle and we’ve enjoyed watching Shrek over and over again in these weeks together, one of Ben’s favourite movies. Ella’s birthday came at the end of September and we laughed, because Ben would have loved to be included in gift giving, so he gave her a silk for her riding hat, which looked very funny with a bobble on top and gave us a good giggle.

It’s very much simple things; it always was, but this is amplified in our lives now, much more than it was before. I am working on ideas to help others and have been looking into the idea of beginning a charity in Ben’s name, which will all take time, but I’m going to try to make it happen when the time is right.

I’ve managed to get a comedy novel out in the weeks that Ben has been without us, but I’ve added a page to raise awareness of his story, too and the need for stem cell donors. It had a very bittersweet feel, getting it finally published, as he was quite excited about his mum writing in the end, though he rolled his eyes about it all a lot, too.

I’ve also been looking at the idea of doing a Podcast on Grief, as I really feel I need to connect with other parents who are going through this extraordinary journey to find out how they cope with everything from all the ‘first times’ to the everyday and the difficult and how different things help with grief. All these things take time and I’m in no rush, but I do find that creativity is a very good anchor for me, a bit of a lifesaver, actually, along with counselling and it allows me to begin to express something that I never wanted to be part of.

Ben wanted EDITH glasses and to have statues built in his name. He said he’d give up his life if he felt other children could be healthy and it broke my heart. In his leaving, I am determined to keep speaking Ben’s name; to keep ensuring the girls know and remember him and to reach out to others still walking through the fire of cancer, with buckets of water and hope for a future for them, that isn’t the future we are facing.

There is always hope; even in the darkest of moments and I always look for the rainbows through my tears. I know they’re there. I just miss him, his enthusiasm for life, for movies, for Lego and trains, for music, for fun and pranks and we will all always miss him and love him to infinity and beyond.

And so the story continues … until the next instalment … much love to you all xxxxx