A Few Weeks In and How Creativity Brings Focus

It’s eleven weeks since Ben passed away in my arms. Eleven weeks. Seems like no time at all and we are surrounded by his possessions, his photographs, his energy and barely able to put one foot in front of the other.

James and I support each other and the girls day to day and while one of us flounders, the other takes the reins for a bit and then we swap over; both collapsing inside because his voice is no longer calling out and it’s really hard, because you are longing for that every day. You might be focused on the mundane tasks of what you actually have to do in the day and some days you might even achieve a few. Other days, not much gets done at all.

Grief raises your heartrate, it befuddles your mind, drains you emotionally, exhausts every cell in your body. Then the flashbacks and nightmares start, the triggers, the reality of the fact that your child isn’t going to run down the stairs to see you and isn’t going to come into the bedroom in the morning to kiss you ‘good morning.’ They won’t ever ask for a snuggle again to get them settled, that was it. The last time that happened. That was the time you were meant to really appreciate. That last giggle, that last laugh, last moment of dry wit. That was it. That was the moment you would know was the last. Except you didn’t know and with grief, you really are changed forever. You only feel like half of you is available, not in a lost your mind way, but because of the trauma. Half of you is reliving that trauma every day and is stuck in the sadness, the loss, the wreckage of what used to be your life; your beautiful life.

Maybe it will change over time, it’s certainly how I feel at the moment; distracted, lost, trying to stay focused, knowing our little boy is no longer able to share our lives. It’s surreal and unreal and yet, very real at the same time.

You really do have to take one day at a time, sometimes, just one hour at a time is enough to cope with.

Ben’s room is largely left as it was when he died. The only thing that’s changed in the last few weeks is his train board has been brought down from the wall, so we can run trains round in his room, a constant reminder of when he was sitting playing on his MacBook, or writing a movie review, chatting with his a dear friend on FaceTime, or giggling at a YouTube video, or working out which of his train collection he wanted to run and which way round the track. I miss his voice. I miss him calling out ‘Muuuummmm!’ followed up by ‘I neeeeed you.’

The girls do their level best to cope with their own grief and their parents’ every day. They are resilient and stoic, gentle and generally positive. Sometimes it’s tough for them and if they feel anything like myself or James do on some days, then it’s a day to take things very steady. It changes day to day. They are also being supported by The Rainbow Trust every week, which is really helping us a family very much.

Grief is such a difficult feeling to describe, but the truth of the matter is that, as time goes on, it is getting more difficult, not easier to be able to cope.

I am acutely aware of so many of us bereaved parents and the different stages we are at, yet everyone is simply trying to manage with life in general, trying to keep going, to keep it together, to just keep moving.

With the girls, we are starting to look at more activities again, to ensure they have a good routine, but that is hard, too. Hard for the girls sometimes and hard for the parent having to brave the chat, the questions and sometimes the tears flow and it’s not something everyone is prepared for, or could possibly be expected to understand.

Ella finds great solace with the horses at the yard and has joined a theatre group, while Rose is a prolific, well, artist, drawing pictures just out of her head and is also learning the piano with great enthusiasm.

It’s strange, feeling caught in limbo between being here with your children and wanting to be near your child who has gained their Angel wings and some days, I feel completely incapable of doing anything. It’s like I am stood in the middle of life, right inside the eye of the most awful storm and I’m standing still, glued to the spot, my heart in my throat, my soul in complete shock from the trauma of what has happened to Ben.

It’s been just over a year since my son had his transplant and on Friday, I made a lemon drizzle cake for his stem cell transplant birthday. It was going to be such a celebration, as he was thrilled to know that he would now have two birthdays, according to the team at Bristol!

Last Sunday, I managed (not sure how!) to run The Great South Run for DKMS with my dear friend, Jane. We raised over £1,400, which is well over the target, so thank you to all who helped us get to that phenomenal amount. The DKMS Rocks we handed out throughout our ten-miler, were received very positively and the DKMS Rocks Facebook page now has over 1,000 members. It’s astonishing that this has happened in such a short space of time and it’s so wonderful, in the light of such tragedy.

In reality, finding myself taking part in something that is helping others, is also somehow helpful for myself, too.

In the last few days, I took myself off at the last minute to Devon on an Urban Writers Retreat and after being so nervous and worried about how I might just dissolve in tears and be unable to cope, I did dissolve in tears, but that was in my own room, where I wrote and wrote and wrote more of Ben’s story. It was heartbreaking and therapeutic at the same time and through putting it down in writing, I hope to be able to help others in our situation.

James has also been out to drum clinics recently and today, was down in Exeter at a steam loco exhibition, which Ben would no doubt have absolutely loved. Finding creative pursuits to distract and engage, to immerse ourselves in and exhaust ourselves with, seems to help aid the heartbreaking, relentless reality of Ben not being here in the physical sense.

I am driven by the need to help others; partly because I enjoy it, but Ben was also very keen to return to the wards where he had been treated, once he was better and probably a bit older, too. He wanted to help mentor, guide, support and chat to the patients there to help them in turn. This was very much after meeting a lovely young adult, who had also been through a similar journey as a child and who Ben was very inspired by and grateful to call his friend over the time he had been in hospital and throughout his treatment.

On the matter of helping others, I have set up a Grief Gathering Event, an afternoon to gather with other bereaved parents and children and to walk at Alice Holt near Farnham. It’s on 17 November from 11.00 am – 4.00 pm and there’s details on my Kindness Creates Change Facebook page.

I am finding that creativity is really something I fall into to help me cope; whether it’s writing, or painting rocks, walking in the woods, sketching; or listening to music on occasion.

In a few days, I will start my podcast, which I hope will allow me to reach out and make connections with other bereaved parents, hopefully bringing people together and helping some along the way.

Sometimes whatever I try to do, it all feels too much and other times, being active, being involved in creating something positive to help others, feels like the best and only thing I can do, because if I stop, then the grief is overwhelming.

I keep holding in my heart something Benny said before he left us:

I’d quite like a pair of EDITH glasses, mummy, so I can look down at all those statues you’re going to build for me.

Well, I might not be able to build physical statues for you, my darling Angel boy, but I will build memories with the girls, so that they will always know and be close with their brother, as you join us along the way and I will create opportunities somehow, to help other children going through this experience, in your name, as you wished so much to help others, my love xxxxx