Relationships

Where to begin on this one?

With a diagnosis of cancer having been given to your child, your life just stops; like your breath; your desire to live; your hope and your dreams. You are frozen in time; locked in that and the many moments that happen in the days, weeks and months ahead, that shape the eventual outcome of the entire journey you are now placed on.

This conveyor belt heading slowly at first, before gathering speed and then finally hurtling along at rate of knots to a destiny you cannot predict at the beginning. Cancer is like a magician, a demon, a vindictive, cruel joker, turning up unannounced stating that there may be or there will be a time limit. The feeling I had when we were told this news, was like goosebumps all over my body, this shiver of energy, of panic and slow motion crumbling of the earth beneath my feet as my world began to implode.

Yes, we are all born and we all know that at some point in our lives, we are all going to die. However, I’m a great advocate for life; for living first; doing all I can do to help others, make a difference, whatever that may be. Only when I’m ready, when I’ve lived, really lived, will I be prepared to step into the water. There are days when I am just longing to see my son, but I know that he wants to see what I create, what I write, what I imagine in his name first.

To know that my children have been brought up with that same ethic, that we all have infinite potential and to imagine and then realise that that potential when a the cancer outcome is not good, will never be explored, let alone reached, is beyond devastating.

Cancer is like an unbelievable reality as it is. It’s like a dream; well, a nightmare. I chose not to fear it, although my own heart smashed to the floor on hearing the news that my son had Acute Myeloid Leukaemia. It made it race and skip, beat in my throat and then caused and still causes palpitations when I think back to that day.

I was damned if I was going to let this monster of a disease steal my son, or any part of my family. I decided in the most frightening of moments, when I held my son’s gaze and wrapped my arms around him in a cuddle, as his heart beat for the last time and he took his last breath, that I was NOT going to let that beast of a disease define any of us.

Ben told me he would not change for cancer. Neither will I. How dare it come along and reach into my family of five and disrupt it in this manner!

I remember a conversation with my sister, as we stood on the stairs at the hospital, a couple of days before we brought Ben home for the last time and I told her, ‘for some reason, I’m not afraid of anything anymore.’ Her response was as defiant as mine. ‘Neither am I.’

I am so proud of the way my son grew wise in those final fourteen months. He was a child of ten when he was diagnosed, but when he died, he may as well have been a young man in his mid twenties. He’d grown so much in understanding of the world and how he fit in it; he seemed to know so much more than he ever let on. His words and conversations were honest, philosophical and almost those of a quiet visionary.

He felt humanity would be extinct before its time, with the rate things are being destroyed … these were his thoughts in October 2018 around the time of his stem cell transplant. He had just turned 11 years old in the summer. He hated to see what was happening to the climate and how we treated animals, the environment and our fellow humans.

He didn’t change for cancer, but he did change as a human being; and our relationship changed tenfold throughout his treatment and we were so close and I really felt I got to know my son. Really know him and what made him tick. To anyone going through cancer with their child(ren), I would encourage you to just be there; be a parent, listen, support and let them know how much they are loved. All your children.

My relationship changed with Ben, but also with my two girls. It’s so easy to get sucked into the unpredictability of cancer and the treatments, the side effects, the sickness and the mini triumphs in amongst the mundane and the frightening.

It is a complete rollercoaster and losing a child, without a doubt, will test your relationships at every level. Even in bereavement, we are still on that rollercoaster, that conveyor belt and we all react differently in different situations. We all struggle some days and others, we just need to know each other is there. It doesn’t make it easy.

Grief is a lonely journey because we all grief differently. I find creativity my absolute Godsend and I need quiet some days; to just be away from everything and everyone. I need to immerse myself in what was before, to remember the magical moments like my children’s birth; the holidays we had in Cornwall as a family of five, the magical moments of watching all three of my children play and bicker together. You never realise how much you treasure those moments in life until you blink and it’s gone.

A bereaved parent will never have the opportunity of holding their child again, or ever hearing their voice, their laughter or see them grow up; and all they long for is to feel their presence. Some days, for me, I just want to build a time machine and live it all again, even if the outcome was the same (though I will always wish it would be different). Then I think I would be bolder in my conversations; I would listen more, be more present, more attentive.

I am lost most of the time, just over a year on. We are heading rapidly towards our second Christmas without Ben and I can’t believe it. Time is flying by and then I have these feelings of knowing that it won’t be the same again, but it is what it is and I have to accept that we must keep putting one foot in front of the other for Ben; we must live life to the full and start to bring some fun into everything again.

Yet, grief is all consuming. Some days are got through with a few giggles, some comedy films, some woofer walks and writing and other days, I could cheerfully stare out of the window all day, unable to speak with anyone.

I baked today and yesterday; the outcome being shortbread, home made pizza and chocolate brownies. I might have made better use of my time by going through the edit for Family of Five, my memoir, but after a few days going through it earlier in the week, my heart needed a distraction. I’ve even found myself some days sobbing at the editor’s comments, when he writes … ‘wonderful writing, Ginny this is heart-breaking, I’m so sorry.’ It makes me realise that for all my words, none of it will truly describe the real heartache, the real trauma I’ve experienced, because there are no words that could possibly express that and I’m sure those who are sadly on a similar path, will fully understand that statement.

I am so grateful that I have a beautiful husband, who somehow still stands beside me through all the ups and downs. Neither of us wanted to be part of this exclusive club, though we were always aware of it looming, like a shadow in the background and yet, here we are; me having counselling every week about all sorts, but just trying to fathom out how I can best try and keep going and how I can support my darling daughters. I worry about the effect all this will have on them in their latter years and I hope that they will one day understand just how hard we tried to save their brother and our son and how much we love them; all three of them.

My husband and I definitely grieve differently and try and give each other space to do so, but communication seems to be the key and it’s not always straightforward or easy.

One thing I do know is that although Ben had cancer, cancer did not have and will never have Ben.

I sit here tonight, grateful for my children, my husband and my sister, my close family and friends, even with some of them falling away, because it’s just what happens. Those who matter know who they are and I am truly blessed and even in this heartache, there is still an ever present desire to make a difference, make a change, a legacy for my son, a legacy for my daughters, so they can grow up knowing him, remembering him and even through the incessant bickering at times, just how much he loved them and how much all three of my bears are loved beyond this life, this earth, this realm; to infinity and beyond.

But right now, I just miss him and that pain in my heart is overwhelming.

I love my bears so, so much and knowing how much Ben wanted his life, it seems only right to want and love our own and to create a great movie for him to watch from wherever he is xxxxx

My three bears xxx