Extraordinary Existence

Today marks two years since Ben’s Celebration of Life. Outside of his dying in my arms and the awful impact it has had on our family, this has to have been one of the worst days of my life. No child should ever have any reason to go through cancer and no sibling, no parent should ever have to experience the loss of a child in this way.

Still, we parents on the other side of a cancer journey still see that childhood cancer funding is just a 3-5%, which is next to nothing and frankly, the biggest insult to a generation known to man. Children are the future! Children are treated with adult levels of chemotherapy going into their bodies, because there are very few alternative options, if any, leaving ridiculously dire outcomes for a number of cancers and then sometimes, a secondary cancer will come along as a side effect of treatment! It doesn’t bear thinking about.

Some days, I feel like I am living a continual nightmare. I wake up and remember everything like it was yesterday. When I go into Ben’s room some days, I can smell the medication still, I can smell him, still; his beautiful, soft skin. I feel frozen when I hear the sound of a helicopter sometimes, too. Not always, but on occasion, I will hear one in the skies above and I will be back in Ben’s bedroom in the unimaginable present of those last few moments and realising that my girls have been present and felt every last heartbreaking second of losing their brother to this awful (understatement) disease.

The dynamic with four of us is profoundly different and I hold onto the moments of laughter or light banter that seem to sparkle in the air when there is a lively conversation in flow. I find myself glancing in the direction of my girls and taking a mental photograph of them, just as they are in each moment and I breathe it all in.

Grief is permanent. It doesn’t mean you are going to be crying every day forever, though you might feel like it sometimes, but it is exhausting to be in that experience all day every day, so your brain protects you and you begin to put one foot in front of the other … and repeat. Life doesn’t come to a standstill when your child dies; it continues; and soon, despite how you might think it goes, life wraps you up and drags you along into the merriment, the madness, the beauty and the heartbreak again. And again. Over and over.

I went into Winchester recently with my eldest daughter; something we have rarely ever done. Not on our own. I always hoped to be the sort of mother who is close to her children and who they might be happy to spend time with occasionally; and over the last two years, I’ve been acutely aware that all of us have been grieving in our own ways and needing different things at different times. But this day was so special and I relished the light-hearted humour and inane chatter we had. We called in somewhere to get a drink (and to be honest, to use the facilities after the drive across). When I was about to take my seat at the small table for two, my beautiful girl’s eyes suddenly lit up and her face was a picture of surprise and shock. She told me to turn around, because there was a ‘boy sitting behind you who looks exactly like Ben!’

Now, I admit that a lot of the time, a grieving parent can be open to seeing what he / she / they need to see, but when I turned round, I had to catch my breath. This young man was in short, the identikit of Ben; in expression, his features, his hair, his clothes and mannerisms. The way he nonchalantly looked over as well, before he left … and even walked like Ben out of the establishment. I was overwhelmed and I cried right there and then. To me, it felt like a sign that Ben wanted his sister to know he is around, in some shape or form and keeping a close eye on her. To her, she pointed out, it was a reminder of squabbling and her annoying little brother! What was so special to me, was the expression on my eldest’s face on noticing someone who looked familiar, even though the reality is that it could never be Ben.

We meandered and chatted, after my daughter had given me a huge hug; and found our way to Wagamama’s, somewhere I’d not been to for many years.

It felt strange and quite overwhelming to be out again in amongst other people. For the last two years, aside from the pandemic, it’s been quite helpful, to be honest, to be quiet, away from the crowds, lost in my grief and my protection for my family of five. I think I’ve actually become accustomed to being a hermit, rather than the social butterfly I used to be.

I feel changed. We all are.

Yet, in all of this, I continue to feel so blessed. It’s so easy to feel wretched, to feel angry and disappointed at what life has thrown at us and some days, like today, it feels good to get out in the garden and use the hedge trimmer on all the brambles with a little more force than required. It feels good to cry into the noise and swear into the ether about the fury I feel towards cancer and towards Lyme disease in the first place for weakening my boy’s immune system to start with and for the life my daughters now have, growing up without their brother.

But it’s not going to change a thing. It’s not going to bring him back.

So, what do I do?

Well, I enjoy laughing with my eldest at Wagamama’s and feel the joy of spending some quality mummy daughter time, which feels so rare and so precious. I write. I take photos. I walk. I watch in awe as my youngest daughter creates an incredible illustration on Procreate in a matter of seconds, just because creativity flows through her at speed like that. I marvel at my eldest as she sings absent-mindedly in the car and am so proud of her and that incredible voice of hers! I remember when all three of them would sing together in the back seat to ‘Under the Sea’ when they were mini and my heart feels full again.

The heartbreak and the magic is that when you lose a child to cancer, there really is no-one who can understand it all, other than those who have experienced the same as you.

Equally, when the signs come, even in the smallest of ways, I feel so strongly that whatever caused you to look to the sky in that moment to see the rainbow, or be stood still at the point a butterfly lands right in front of you, or to be seated in a coffee place at the very moment a boy who looks just like yours, even though they are no longer on this earth, is sitting just metres away and you see them … I believe those signs were meant for only you in that moment. That is something that only those who’ve been in the same situation, who are fully heartbroken and needing that connection, can really be fully open to seeing and experiencing that which seems impossible, and yet is something so incredibly real.

So, when I feel at my lowest, it’s my daughters, my husband, my son, who remind me that there are still blessings and there is still magic to be found; you just need the courage to believe and trust again that there is still more of that to come for you in this extraordinary existence.

Love to all xxxxx

Me and eldest xxx