Forgiveness

Losing a child forces you into a strange dual reality most days. You’re no longer the person you were, even before a diagnosis of an illness.

Cancer has changed me and all the hope and then devastation around the news that there was nothing more that could be done for Ben, left me numb.

I remember the day we got back from Great Ormond Street, when there was a possibility of a trial for Ben for a second stemcell transplant, as he’d relapsed within the first year, meaning that life was now attached to a ticking clock and there was a deadline.

I remember the worry and sickening feeling in the pit of my stomach when my sister sent me the latest numbers as James and I travelled up to London from Southampton by train. I remember wondering what on earth we were doing leaving our son, when the odds looked so dreadful and I just wanted to spend every waking moment with him and the girls, breathing in every second.

Instead, we were out of our comfort zone, being thrown into another opportunity, which, gradually, over that meeting, I actually began to feel that sense of hope surrounding me again.

When I look back and realise the decision we made between us as we left the hospital and walked back to the station by Industrial Light and Magic, where Ben, months earlier, had enjoyed the most magical Make A Wish, I feel now in some ways, relieved for Ben that he didn’t have to go through the possibility of turning nuclear. Who wants to have radioactive anything in their bloodstream? Yet that was what was on offer and we were at the point of no return. We, like many other parents in these moments, were at the stage of wanting to save our son any way we could. The odds of losing him were just hours away from being reality.

On our return, we had both gone straight in to see Ben and had giggled about the fact that he could now be the real Spiderman, after being Doctor Who when he last regenerated his cells through his stemcell transplant. He had smiled and shrugged and agreed that Spiderman was a good option and he had decided that he could and would do it.

Then we were called swiftly opposite into the Nurse’s room, where we sat with a Consultant and another Nurse, being asked about how everything had gone in the day.

As I was talking about trying to get Ben’s infection rate / CRP numbers down and the fact that although we’d been initially quite scared about this trial, we felt that if it was the only option on the table, we were willing to try, I suddenly came to acknowledge the situation we were in. Sitting in a room with a Consultant and a Nurse silently listening was never the place you wanted to be.

The moment I stopped talking, the Consultant’s words came and hit me like a ton of lead … ‘I’m afraid none of that’s going to happen.’

My voice left my body, my heart began racing and time stood icily still. I remember just looking at the floor, like a child not wanting to hear or see the reality that was before me. I glanced at James, whose look spoke so much more than the words we could try and get out.

‘I’m sorry,’ were the words I felt myself mouthing, but I don’t know that James saw, or that they actually came out in any audible manner.

I remember the feeling of rising anger that someone could actually state when my child’s life chances were over and I left the room and stood outside the door where Ben was happily chatting with Ella, Rose and Auntie Kirstie. I opened the door and looked at my sister and discreetly shook my head without saying anything and the look Kirstie gave me then, was one I’ll never forget.

You don’t forget these moments; the breaking of a heart when you’ve got a boy who wants to live in front of you. At this point, I was praying for a miracle, for someone, something, love, Angels, Consultants, God to step in.

In those last few days, a lot happened. A beautiful friend of mine I have known since I was sixteen stepped in and offered to look for alternatives abroad; other trials; a flight somewhere new that could offer a chance. He said it wasn’t fair, that we were such a lovely family, such kind people.

I was so grateful for that opportunity and so was Ben. I told him we had friends in the States that were going to keep trying for us, for him and he was pleased.

It became apparent in those last few days of Ben’s life, that Leukaemia was generating new nasty cells at speeds we could only imagine, doubling at a ridiculous rate, hours at a time.

Ben wasn’t fighting cancer; I choose not to say that word, as that implies if he lost the fight, then he wasn’t strong enough. Cancer doesn’t care about how strong you are, what plans you have and all the hopes and dreams you have for your children and your lives ahead. It doesn’t care that you want to be the best YouTuber, or Director or if you want to adopt children because you know that it has taken any natural opportunity away, thanks to the need for chemotherapy to save you.

It doesn’t care about you or anything or anyone around you.

So I don’t say the word ‘fight.’ Ben might have had cancer, but cancer didn’t have Ben. Cancer did not and will never have my son.

Grief leaves you going over and over these memories and situations again and again, wondering if you could have done anything different. I will always wonder about and research the link between Lyme Disease and Acute Myeloid Leukaemia, as my intuition says there is a link, though it is not proven. There seems to be a potential link between Lyme and other cancers and I feel very much that Lyme Disease smashes down the immune system to leave it wide open to other things.

I wish there was more understanding around Lyme Disease, so Doctors could know it or at least test for it more regularly. Ben had six of the tick-borne infections by the time he had chemotherapy and it had affected his central nervous system and changed his personality. In the weeks following treatment, it was like sitting with a different person. Knowing the Lyme Disease had gone, Ben returned to the happier soul he was, with less anxiety, agitation and sensitivity. I wish it had been picked up earlier. I can’t help thinking that if his immune system hadn’t been so broken, that Leukaemia might not have taken hold, or at least we might have had more time.

The fact is, we will never know.

Ben has died and that part of our lives has been changed irrevocably. There will be no more time with him, no more new videos or photos; no more new memories. Even now, just a year on and the girls look and sound so much different to when Ben was here. Life is changing, time is passing and Ben’s energy is missed in the physical form.

Whatever people think and assume about grief, life becomes complicated on a level that it is hard to put into words.

Some days I just wish the world would stop and pay attention to changing the way we treat those with cancer. There has to be a way to treat children with gentler therapies and medicine and there have to be more options; more research into the alternatives. Somewhere, somehow, one day I hope and trust there will be much more focus on this aspect of childhood cancer and one day, in years to come, I really hope it is something that no longer exists.

No child should go through cancer and no child should lose their life over it, yet it happens and on a spiritual level, I can observe that all that was needed to be experienced and learned, was. On a human level, my goodness, there was so much more to Ben and so much more life to be lived, for him and for the girls together and the reality now, is an ever crushing blow to the heart.

So, we come to the word ‘forgiveness.’

I don’t want to be feeling sad and angry or hopeless for the rest of my life. I know I will always berate myself about what else I could have done for Ben, all the times I could have reacted more quickly to my intuition and pushed harder for answers. I pushed, I questioned, I sent healing right in the middle of treatment with Nurses looking on inquisitively. I sent healing from home when I wasn’t with him, to see his neck looking much better the day after and feeling more comfortable for him. I spent as much time as I could with him and tried hard to divide my time between all my children, though it was extremely difficult at times. I know I’ve let my girls down, but I hope in time as they grow older, they understand why I had to spend so much time in crisis with their brother. I would do the same for all my children. I love them all with the strength and protection of a lion.

If you are a bereaved parent, like me, there comes a time, when you have to almost break your heart again to recognise all you couldn’t do and forgive yourself. It’s so hard, because it means finding the courage to accept that you couldn’t protect your child and you couldn’t save their life. Protection of your children is your right and role you assume as a parent, isn’t it? You made the decisions you did in the hope that the outcome would be a long lasting life and the fact is, that was stolen away from you, for whatever reason.

Forgiveness means acknowledging it’s not your fault, something that I find very difficult to accept and may take years to fully recognise within my heart.

But I think of my darling boy and my girls and I know that Ben would be really sad if I wasn’t living my life to the full and enjoying it. He wanted to enjoy life and would hope that whatever the weather, we could somehow life life for him …. and to the max. It will be the most boring movie ever for him to be watching if we’re all crying here!

So, for today at least, I will try and accept and I will try and forgive, in the hope of letting go of some of the pain and some of the guilt of not being able to be able to protect and save my son from something I had no control over.

I hope in my heart, that you can do the same in your own situation.

Sending love and light to you all xxxxx

Holiday fun.