Author: Ginny Walker

It’s been a while since we’ve posted anything.

It’s been so difficult trying to process the feelings of hope we had after Ben’s initial diagnosis, the determination to find a stem cell donor, in the wake of our world being turned upside down and the feelings of courage, in spite of ourselves, knowing that Ben had relapsed last year and options were few.

It’s hard to put into words the emotions you go through in the loss of a child, but you only have to think about the prospect of living without one of your own and it is simply unbearable. Our children, all three of them, are our life blood, they are the loves of our lives and the reason we get up in the morning.

In the moment when Ben’s heart stopped beating and mine continued, knowing he’d grown in my belly and I’d birthed him, had his heart within me for a time; the only way I can put it is that the first breath without him took every ounce of courage and strength within me.

Grief is like a tidal wave, most will understand. Some days you feel like you are able to manage, particularly on a day when the sky is blue and the air is warm. It feels like you can put one foot in front of the other and know that you will still be breathing at the end of the day, knowing you made it. Then the greatest, most powerful wave will knock you flying, sending you smashing to the ground in a million shattered pieces; winded, breathless and disorientated in life. It happens once and in a split second, it happens again. You get up and get knocked over and the ability to breathe becomes impossible. Life has changed irrevocably and the sparkle of light, the dry witted, full of humour, endlessly chatty soul when it came to movies, trailers, Lego, Star Wars, Dr Who and The Avengers, is no longer with you in the physical sense. It is absolutely heart-breaking.

It’s so important, too, to recognise the impact Benny’s dying has had on our beautiful girls; Ella and Rose. Life is complicated enough and then there’s the loss of a sibling to try and come to terms with. Ella doesn’t talk too much about Ben at the moment; she tells me she sits with the emotion of it all and then continues to focus on her life, her hobbies and her friends, which I feel is a very teenage and actually mature response and she knows the support is there when she needs it. Rose writes songs, draws pictures, allows the tears to flow when she needs to about Ben. It doesn’t make it easy to deal with and the tenderness with which we respond to both the girls’ needs is paramount. Grief doesn’t disappear after a few minutes or months. This is here with us for a lifetime, because Ben is very much a crucial link in our family of five and we will love him for a lifetime and beyond.

So, what’s been happening in the last thirteen months?

As you will be aware, last year, we were overwhelmed by the response to our ‘Ben’s Epic Christmas Boxes’ fundraiser, raising an epic £6,000 in total. £5,000 of that money was spent on making the most Epic Christmas Boxes that we could for the children in the three hospitals Benny was treated in. We received incredibly positive feedback and are looking forward to doing it again this year, hopefully building in some Epic Christmas Ward Boxes and including Siblings and Parent Stockings, too. As you’ll understand, this year has been one that has been exceptional in a different way for all of us on the planet and so we are awaiting news from the hospitals as to what can be achieved this year. We’ll put a page together soon.

Just ten weeks after Benny died in my arms, I ran the Great South Run on a whim with a dear friend of mine, Jane – we also undertook a Stemcell Donor Drive a few weeks later for a work colleague of hers. Jane also kindly started up the DKMS Rocks page on Facebook for us in memory of Ben.

What we have found through experiencing grief of this magnitude, is that we all grieve and experience it in our own way; grief is unique to every single soul on the planet. We all also tend to gravitate towards creativity and kindness; for ourselves and for the ability to cope. Some days it feels like we are all managing; other days we catch one of us adrift and simply hold the space and give that person time and love and encouragement when they need it.

I have found writing has helped me a lot in my grief. I released my comedy novel, Hatch Match Dispatch this time last year, quite how, I don’t know. Ben had been suggesting ideas for the following three books while we were sat in hospital, the first of which I’ve started writing. I still find it difficult to believe he’s not here, even as I’m writing this.

Walking the dogs offers me my calm; wandering in nature, taking photos into the sun and seeing dragonflies, which seem to follow me around a lot! I find it really helpful, actually, chatting with my counsellor on a weekly basis in nature. It gives me the freedom to talk about the really emotional aspects of grief and every time, it feels like Mother Earth absorbs that sad, beautiful energy and turns it into something gentle and less frightening.

James created a garden railway over several months following Ben’s leaving us. It has given him solace and a place to connect with Ben. He and Ben share a complete love of trains and even though it’s different now, when James wants time to just ‘be’ then the shed and the railway is definitely his happy place.

James has also got involved with the Drumathons run for DKMS and the Youth Cancer Trust, organised by our friend, Joe Musker, something he’s really enjoyed doing – especially as a seasoned Drummer!

During Lockdown, I decided to run 120 miles to raise money for DKMS, which I duly did and it brought up my fitness tenfold! Unfortunately, as time has gone on over the summer, my fitness has headed back down again. However, I am now walking a ‘Virtual Camino de Santiago de Compostela’ for DKMS – 480 miles and details of which can be found here: https://www.justgiving.com/fundraising/ginny-walker5

On what would have been Benny’s 13th Birthday, we went ahead and made a cake and played ELO’s Mr Blue Sky. Rose decorated it with an Iron Man fist and his name and we sang and Rose helped Ben blow out the candles. When I returned to the kitchen to cut the cake, I thought back to the last two birthdays for him in hospital and the birthdays when he was mini. He loved birthdays and Christmas. I fell to pieces in the kitchen and we all had a slice and thought of our beloved son and brother.

Unless you have lost a child, it is very hard to truly comprehend the load on your heart every day, knowing that life will never be the same and that the future you had taken for granted for your children, isn’t the one you had hoped for. We keep in contact with and hear other families’ stories and it’s so wonderful to hear all the positive news of overcoming and managing; we raise a glass for those quiet victories. Then there are the stories that no-one wants to hear and we cry with those families who find themselves on a similar path, because we know exactly how that new reality looks to a newly about to be bereaved or bereaved parent and all we can do is send them love and courage.

When I think of all that Ella and Rose have coped with and are still striving to manage in their childhood, I am proud beyond words, just as much as I am heartbroken for them. Yet, they show me and James every day that they share that same determination Ben has and had, that same sparkle of light, that same tenacity for just trying and that gives me huge courage.

I started a Podcast – Family of Five on Podbean dot com earlier in the year. I have three more podcasts to add, which I hope will go up in the next few weeks. I talk about Ben, our family’s experience through childhood cancer, about relevant topics and how creativity can help in grief.

In June, I signed up for a Screenwriting Course – I know – don’t ask! – which was twelve weeks of full-on commitment to the cinematic written word and I’m pleased to say that today I have finished a very, very rough first draft of something really special!

In addition, Family of Five, my memoir, is back from the Editor and I hope to be editing that, too in the coming weeks.

Tonight, we attend the very first Virtual Gala for DKMS, something we are so proud to have been invited to.

We will always be advocates of stem cell donation and will always do our best to highlight the need for stem cell donors. There are only 2% of people on the register in the UK and that just isn’t enough. If you imagine how few people that might be compared to the amount of people who are diagnosed with a blood cancer every year. A donor who matches with a recipient must be as closely matched as possible for it to be successful, so the more people who are willing to donate their stem cells to someone in need, the better. It is similar to giving blood and is the greatest act of kindness for a family in need, believe me.

My hope is that one day, the discussion around stem cell donation will be the norm until cancer is kicked into touch. I hope that millions more will sign up, that the education around it will be improved ten-fold and that eventually, becoming a stem cell donor will be recognised as the right and kind thing to do as a good human citizen and might even one day, become an optout situation, like organ donation.

Love and light to all xxxxx

As many of you will be aware, we set up a fundraiser for Ben’s Epic Christmas Boxes a few weeks ago and have been overwhelmed by the support and donations given. We surpassed our original target of £5,000 and made it to £6,000 in the last few hours, before it closed on 4 December.

It’s been a whirlwind of concentrated effort over recent weeks, with focus on particular ages and engaging content. While looking for quality items to be placed in these special boxes, I have felt very much as if Ben has been looking over my shoulder and guiding me all the way through. All the boxes are very much inspired by Ben and his love of Lego, comedy, Marvel and just having fun.

We are really hoping that the children on the wards where Ben was treated in Portsmouth, Southampton and Bristol, feel loved and supported by the amazing group of Santa’s Elves who’ve helped to allow this magical sparkle of light to come to fruition.

The reality of driving away from our home, just James and I in the car, with Ben’s beloved Leopard and a myriad of boxes, all decorated with ribbon and a Ben’s Epic Journey sticker, to distribute these gifts, has been an emotional experience.

It is just nineteen weeks today, that our son gained his Angel wings and we were left in a reality and life-changing situation no-one expected or imagined in our lifetime. It was honestly hard enough to step into the foyer of Portsmouth and Southampton; Southampton, perhaps a little harder, knowing it was where Ben spent his final weeks.

When we arrived in Bristol yesterday, it felt like a huge step to get into the lift of the hospital, listening to the gentle undulating tones of Peter Sallis as Wallace of Wallace and Gromit, bringing joy and feeling pain; wanting to bring kindness and gratitude, whilst feeling a huge void of love and grief, having had so much to look forward to at the beginning of the summer, to have it all taken away so soon.

I remember looking at James as we headed up to the top floor, feeling suddenly overcome with emotion and told him quietly, ‘I don’t want to cry.’

Actually, the hugs we were received from the amazing Nurses on Starlight, were so comforting. These incredible people support and care for families in very difficult circumstances; sometimes life-threatening situations and they do this with love and kindness every day, day after day and they do it with courage and compassion. They have seen many families celebrate and get through this journey and go on to live the best lives and they have also seen the other side of this experience; where families return to help, where they feel the intense loss of a child they treated, as the family descends into grief.

They are amazingly beautiful people and we feel so blessed that they looked after our Ben for us last year.

It was so lovely to see them and we caught up with one of Ben’s Nurses, who was and still is, very special to us.

So, last night, as I sat quietly at home beginning to write this update, the girls, having been looked after by my lovely sister on Thursday and yesterday, both settled in their own activities before bed, (Rose made a cardboard sleigh!) the truth is, there’s an unbearable silence without Benny, a huge, gaping void in our family, which is visible from every angle, every breath, every tear and every giggle.

I ache for him to pootle down the stairs and tell me, ‘Mum, I neeeeeeeeeed you.’ I long to hear his voice, his latest download, his review of the latest StarWars film, something he was desperate to see. I long to kiss and cuddle him. I miss him so much.

Ben always liked the idea of time-travel and I wish right now that I had a time machine, that I could journey back, even if I couldn’t change the outcome. A bit like the film by Richard Curtis, ‘About Time.’ I would just go back to take note of everything, to observe, to enjoy, to cherish every single moment. If I could just go back once more to remind him of how much I love him and the girls, if I could say it when they are all together, just once more and they can all roll their eyes, laugh and tell me how embarrassing I am.

You see, if it’s one lesson I’ve learned through all of this, it’s that life is beautiful. Life is fun, it’s harsh, it’s wilful, it’s fragile and precious and grief; grief is a shattered heart worn on every bereaved parent’s sleeve, in all they do and all they are. It’s also all the love you have for your children, for life.

It’s so hard to look at and imagine our lives, our future, without our Ben in the physical with us, but I know, I really know that he would be gently coaxing us on, ‘Come on, it’s time, you need to do this. You’ve got this. Love you, Moom.’ He’d be so sad to see us sad and that’s why, as hard as all of this is – and it is (even though something like these Epic Christmas Boxes are also so full of joy and love) – he inspires us.

He motivates us, gently, but firmly. He brings rainbows when we need a sign and dragonflies to bother his Daddy as he runs a train in the garden. So, if he can’t be with us living his own beautiful life to the fullest potential, we will live ours for him, with and for our girls, for our family, to continue his sparkle, his wit, his light and therefore, somewhere, I have to believe, he is still with us, in all we are and all we do.

Merry Christmas.

Love you, Beeps xxxxx

Last weekend, I was with my sister. Sometimes weeks fly by and other times, it feels like so much can be crammed into those few days before we reach another Saturday.

As I sat writing this blog post last week, Stevie Wonder’s song, ‘Faith’ was playing in the background and Rose was drawing birds, while Auntie Kirstie was chatting about Songbirds from a book she was gifted by a friend a few years back.

In the last few weeks, we have tried to pull together as a family, while all grieving in our own way. Ben’s energy is forever omnipresent, but some days it feels like an echo of a life we once had, in a story we told ourselves.

He existed.

He was here and so each day becomes a day where I imagine him with me and us for every part of it. If there is something to laugh at, I can hear his voice and giggle in the ether and it warms my heart and breaks it at the same time.

We are still living in this strange and painful duality of life; existing between the conversations around Ben’s treatment options, his need to head home and the crushing reality of what that means now, moving with the grief of his parting, knowing we were just a few weeks from a second transplant. The impressing disappointment sends ripples through my heart every day and I catch my breath at the inability to be able to hold my son tight to my chest and never, ever let him go.

I fluctuate between wishing to God that I could turn back time, find some alternative, some miracle solution to avert the outcome, change the reality, alter the situation for us, for the girls. The unbelievable pain of Ella and Rose being without their brother is hard to watch and accept some days, knowing that we will never be able to come to terms with being without Ben and are barely scratching the surface with this emotional rollercoaster called ‘grief.’ Knowing that in days, months, years, a lifetime, perhaps, the repercussions will bounce back, reflect, astonish, crush and appear in the brightest of colours, the most painful to see and experience and there is nothing any of us can do about any of it.

Ella and Rose are doing admirably, though some days are better than others. Some days there are tears, certainly from our youngest about her complete love and sadness at losing her brother and Ella copes by keeping herself distracted as much as she can and singing her heart out at every possible moment.

Losing a child to cancer, or to any other complete tragedy, is something that is hard to put into words, but when I managed to brave it the other day and go to my first Parents’ Bereavement Group, I met the most beautiful individuals, coping with the greatest burden of loss and over and over, the same conclusion; we can reflect, distract, breathe through, talk about, create, establish, make a difference to others, go through the mundane of each day, laugh, cry, live our lives to the full … but always with the power and pain of the emotion we feel for our lost children, the loves of our lives who will never get to experience a physical life any further than their existence allowed.

At the end of the day, our lives can be filled by the most incredible things and experiences, but the hardest part is opening our eyes, knowing our reality and having to put one foot in front of the other, going on in our lives without that little human being, who was part of our home, our family, our life, our fun and our love.

It’s impossible. I tell you. Every day.

Some parents talk about wanting to die because a part of them has died with their child and some talk about living their lives to the fullest for the benefit of their absent child and the siblings they have left behind and everything in between. It’s not the easiest of paths, I can honestly say. I am grateful for the connection I have with my son and the girls and for the ability to keep myself busy, but once there is calm and quiet, I become fidgety and can feel the emotion building up, because grief is relentless and overwhelming and sometimes just knocks you over, without warning.

Until you have experienced looking in the eyes of your child as they are leaving this earth, knowing you are without any choice, that you are helpless to the circumstances and that you will never experience them growing up, achieving all you see your friends’ and family’s children achieving; that you will never ever have the utter joy of hearing their voice again, telling you they love you around all the planets, the moon and to infinity and beyond again, because it’s just what’s happened, you will never truly be able to understand the raw pain so many of us bereaved parents and families are just trying to cope with to be able to remain present.

Conversations are exhausting some days and others, a good distraction for a few moments. It’s very hard to just get on with the day, when life has dealt you a hand that means your world stands still and your heart stays broken. The girls keep me motivated and I do my very best to support them in these, sometimes unsettled times.

Over the last week, the fundraiser we set up – https://gogetfunding.com/bens-epic-christmas-boxes/ – is gathering momentum and currently stands at just over £3,000 which is beyond amazing. We are really hoping to smash the target of £5,000 to enable us to send out quality gifts for the three main wards and hopefully the Day wards of Portsmouth and Bristol, where Ben attended on occasion. A huge ‘thank you’ to all who’ve managed to share and donate for us, it’s been very overwhelming to see.

Last weekend I managed to record my first ever podcast, which I’ve called Family of Five, which can be found on www.podbean.com

If I can, I’ll embed the link in this post. On that note, if anyone would like to raise topics of discussion or would like to join me for a chat further down the line on any particular aspect of grief and creativity, your own journey as a bereaved parent, please get in touch with me by e-mailing: contact(at)bensepicjourney(dot)org.

Yesterday, Friday, I heard from a friend of mine, who confirmed there was a piece in the local newspaper about my recently published book, Hatch Match Dispatch and how Ben inspired the ideas for future books, but which also highlighted my desire to raise awareness for the need for more stemcell donors, as there are only 2% of people on the register, which is unbelievable. I was very pleased to know it had gone in the paper, so it was a positive end to the day.

Today, it is fifteen weeks, over three months, since our beautiful boy leaned forward to me for one last cuddle. I would do anything to hold him again, but I know that I have much work to do here on this earth first before I have that opportunity and he, with my two incredible daughters and hubby, remain my inspiration for helping others and trying to make a real impact, a real difference in the lives of those who have been touched by cancer.

Dear all,

I have set up a Grief Gathering Walk Event, which will take place on Sunday 17 November at Alice Holt Country Park and Forest, between 11.00 am and 4.00 pm.

You can find all the details at my Kindness Creates Change Facebook page, here:

https://www.facebook.com/events/703867300079912/

If you know of anyone who has lost a child, or families, siblings, grandparents, aunts and uncles, who might benefit from being together, walking and talking if they wish, sharing stories or just needing someone to stand with, please let them know they will be warmly welcomed.

Wrap up warm, folks.

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

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

I am in the process of writing a book about this experience, Ben’s journey and our journey as a family and am already over 20,000 words in!

It will very much reflect on our own personal experience, with help and encouragement for others facing this and similar diagnoses. It started out as a few notes about what was happening and my need to help myself as a parent through this and now I really hope to help others by raising more awareness for stem cell donation and its undeniable blessings and benefits to others as well as helping others to navigate through the same and similar journeys.

I hope in due course this will have some benefit for a charity very close to our hearts.

 

 

It’s World Cancer Day today;4 February 2019 and Ben’s just beyond his 100 days post transplant. We have so much to be grateful for.

Where to start? We left Bristol just before Christmas and returned to a newly decorated home. It was a real blessing to know that so many friends and family wanted to help while we were going through a bit of a time and really made all the difference for us.

Ben was very happy to be home and we were all relieved and thrilled to be back under one roof together. We have continued to wipe things down for Ben and he’s now swapped bedrooms with Rose, meaning he has his own bathroom, so we can ensure he stays as clean and healthy as possible!

Cleaning Lego and wiping books down as we sorted his bedroom out has been a labour of love and also really exhausting! Christmas was very quiet and life has remained that way over recent weeks.

Something James and I have been particularly aware of is the girls’ need for support in the weeks post BMT for Ben. It’s actually been very surreal being back together and living through this experience has brought a lot of things into focus for James and I about what matters most.

Our world was shattered last June and mummy being largely with Ben over six months in hospital, has definitely taken its toll on our girls. Never underestimate the impact that having a sibling with cancer has on their fellow sisters or brothers; it’s huge and the tiny things you think they are going to be able to cope with, become the most difficult obstacles. We are so grateful for the support we are receiving from The Rainbow Trust and a Psychologist at the moment for the children and our family as a whole.

Ben has had some great news since being home. In Bristol, he overcame two horrendous gut infections, CMV being the one which could have potentially prevented the transplant from being successful. After a couple of very difficult and quite traumatic weeks when Ben was extremely poorly, by some miracle, he began to turn the corner. By the time we left Bristol, CMV was non-existent.

However, in the first couple of weeks that followed back home, it appeared that CMV had returned and the numbers began to rise again, much to our dismay, so we were informed that he had to go back on a stronger drug to be able to hit it hard again. Unfortunately, this drug is a little more hard-hitting to the kidneys as well and given Ben’s camel like nature when it comes to drinking, there’s been a lot of nagging going on!

Still, today we were informed by our Consultant that last week’s blood results showed that CMV is undetectable again, which means he will go back on a more moderate drug in a few weeks’ time, which will help keep it at bay and hopefully gone!

We have been so blessed by supportive friends and family in these turbulent months. We are having to keep ourselves to ourselves quite a lot at the moment to give us all time to recover and for Ben to get back to full health, which has meant we’ve not seen anyone really in recent weeks, but we will look forward to seeing some of you in due course, as Ben gets stronger.

Reflection

Our lives are very much changed by last year’s events and it’s put many things into perspective for James and I about our lives, our family, what really matters. We have met the most amazing and incredibly special families along the way and been blessed by a network of incredible and dedicated NHS staff and charities, who we have relied on and who are now an integral part of our life.

This journey is not normal and it is unrealistic to expect that things would be exactly the same as they were before it all started. However, with every day we are moving closer to a new normal, whatever that is.

Ben will likely be on medication for the rest of his life, but his sisters have their brother and we have our son and that is something to quietly celebrate every single day and all we hope for is time; quality time and quality fun.

All you need is love and we send it to you all in abundance xxxxx

 

Today is a rather emotional day for me, because it would have been my Dad’s 70^th and he wasn’t around in my growing up years, but we got to see him every month or so. However, in adult years, more often and in the last six or so, he enjoyed a really lovely relationship with all three of his grandchildren and they adored him.

So, I was already feeling a tad wobbly this morning and when I wandered round to the Parent’s Room, I joked under my breath, asking him to send us a rainbow today, just as my sister and I had seen on the day he’d passed last year. It was a bright and sunny morning and I had a good feeling.

Ben has been managing tiny amounts of food in the day, but mainly rolls and has already stated to the staff that he will not be eating any of the hospital food, despite it being made fresh here on the BMT Ward! I had mentioned this yesterday to Doctors and Nurses, feeling that Ben may take a while to progress, if he’s just nibbling rolls and apples every so often.

Auntie Kirstie visited this afternoon and Ben enjoyed chatting to her about Marvel and film theories. Our Consultant popped in while I was still up at the house sorting the laundry and said she was so impressed with how Ben was looking today, that she would see if there was a gap in his medication long enough for him to get off the Ward!

Before we knew it, at 4.00 pm this afternoon, we were in a cab up to the house and he ate a proper meal! I literally couldn’t believe it! He has to be really careful, as he has been nil by mouth for a fortnight and not eaten properly since mid way through October. He surprised and delighted my sister and I and managed some pasta, rocket, cheese and dough balls with some water to wash it all down.

We enjoyed a good hour of Harry Potter, before having to head back to the Ward for 6.00 pm for more medication, but I feel so immensely proud of Benny for trying so hard today to make positive steps forward. He’s beyond exhausted now and has barely walked thirty metres.

It is so hard to describe the milestones like this after almost six months living in hospital. I feel like I’m able to be mum again to my boy and my girls – and my goodness, they have been waiting such a long time without mummy around so much and it’s because I see a flicker of light at the end of the very long tunnel we have been strolling down and live in hope for the day we are told we can actually go home home.

It may not feel like a big thing to those who haven’t been in this position, but to see him eating is such a massive step forward in his treatment and such a relief. Having a transplant for a person is a milestone; it’s part of the journey, not the end. Ben will be on medication for the rest of his life and there will always be certain restrictions and worries for him, but we are remaining positive for a full recovery and all the blessings that will bring.

The incredible children we have been so fortunate to meet during this journey have continued to motivate and astound us with their inner strength and determination to succeed. We have been right at the edge of life and to even begin to reflect on that experience as a mum, as a family, is hard to put into words.

For now, I am living in gratitude; for my children, my husband, my sister, my wider family and friends – new and older friends and the incredible staff of the NHS who continue to support us through this experience.

And whatever your beliefs, I happen to believe in signs and there have been plenty through this extraordinary experience and so to my Dad up there in the blue sky, Happy Birthday. Thanks for sending me and Kirstie that rainbow today. I know you’re checking in and making sure we’re doing okay and I am really grateful for that xxx

 

This weekend, we are heading to Bristol.

It’s been such a blur, this summer and this next few weeks will doubtless be the hardest part of Ben’s Epic Journey … but we have learned so much along the way and we are so grateful for all the love and support we have received from friends and family, from completely dedicated nurses and consultants and the incredible families we’ve been privileged to meet along the way.

Ben is in a very good place mentally and not too bad physically either.  He’s not been eating the best diet in the world, but he has been eating, which is good.

We are currently coping with the practicalities of getting ourselves to Bristol and tidying up at home, packing what we are allowed to take for the ward, managing the works at the house and trusting we’ve got everything taken care of as we move into the next phase of Ben’s recovery.

The impact that a situation like this can have on a family and especially on the siblings, can never be overlooked or underestimated.  All the focus has to be on the person who is going through the treatment and it’s tough on your time and energy. You do your best, but it’s not always easy. We currently have a charity coming in to offer us support on an emotional and practical side, which is wonderful and will be on-going for the time being.

There are days when you feel so isolated going through this, but in lighter moments, you have this amazing hope for the future, knowing it will be different and hopefully so much better.

For the most part, you live in gratitude; gratitude for the magical moments, for the cuddles, the moments you get a giggle, a roll of the eyes from your daughter as you say something really ‘silly’ again to lift the mood; the moments watching Dr Who with your boy, as he strokes your hair and gives you a kiss on the cheek just because he wants to; and bouncing on the trampoline with your youngest, because she has you with her for a few minutes and just wants you to play and have fun before you head back to hospital. It’s those moments you treasure.

I can’t lie, it’s all a bit scary and feels a bit bigger than us at the moment, but the upside of facing our fear head on, is the fact that Ben will effectively regenerate in a few weeks’ time like our very own Dr Who and be … a bit of a super hero in my eyes actually.

The rest of us are all flu vaccined up and are looking forward now to Ben’s transformation back to a happy, healthy and energetic young man. The short burst of cycling along the sea front in Southsea with his Dad and few times in the Physio room have helped over the last couple of weeks in that process for sure.

Though we are only part way through this journey, we can’t thank the staff of Piam Brown in Southampton and Starfish Ward in QA, Portsmouth for getting us all this far.  The laughs, the care, the hugs, the support, the complete dedication to our boy and our family during what has been quite an extraordinary existence, has been overwhelming and we know the team in Bristol waiting for us, are also amazing and we’ll be there for some time now under their care.  Thank you for keeping us in your thoughts and for sending us positive and healing energy.

Stem cell donation is so important. We were lucky enough to find our magical match and words cannot describe how grateful we are for that individual’s kindness.

If you can do it and you’re fit and healthy, please think about registering with www.anthonynolan.org or www.dkms.org.uk

I can never truly express the gratitude as a parent when you finally hear those words, ‘yes, fully-matched donor,’ but my heart is full.