James Edwards, Life and Legacy, and an invitation to the House of Lords!

More Magical News: Oil Pastels by James + Fundraising for Brain Tumour Research, A plaque with his name on and updates from The Medicinal Cannabis Mission!

James Edwards, Life and Legacy

Welcome to my newsletter. Thank you for remembering James with me. I am sharing more notes on this strange life, the madness of knowing and not knowing, hoping that I reach others, hoping to connect. Most importantly it’s a massive Thank you to Reece and everyone at The Ship Inn & co for their huge efforts on the raffle. Also - news of an invitation to The House Of Lords! And some of my usual waffling about the marvellous James Edwards.

After 8 months of barely being able to lift the lid on my laptop I have found the urge again. When I am not writing I am disconnected. A huge part of grief is avoidance. We are very clever at keeping ourselves too busy to connect to our inner truths. I have been hiding under bushes and trees in gardens and burrowing myself into the shade under heaps of new words; botanical plant names and parts, adaptations, soil types, pests and diseases etc. The cleverness of plants is to be admired. Unlike me they know exactly what they are doing. Their ability to evolve makes me feel inferior. We insist on changing our environment to suit ourselves, - don’t like how I feel - have a stiff drink, numb myself. Don’t like how I look? Dye my hair, cover my face in makeup. Therapy teaches you that the only way to overcome anxiety is to stare it in the eye and notice every morsel of it. Notice it, let it come, be curious, let your body meet it and your body will know what to do with it. I’ve watched my plants blown to bits and still they grow, they face the storms, the heat waves, the depleted soil - evolve, adapt and mostly do a damn good job of surviving. Some don’t and that’s life. That’s death. In times of drought for example leaves curl themselves inwards or grow tiny hairs to create humidity, preventing water loss. On the 6th September I will get my exam results from the Duchy College, hopefully passing my RHS level two Diploma in the Practices and Principles of Horticulture. I have driven myself every Monday, tears pouring down my face, through that bloody awful traffic on the A30, (monstrous roadworks), with half my head screaming at me, Turn back, go home, lie in bed, sleep the day away. But then it came, that driving force, something invisible, James perhaps, took me all the way to my desk and put my arse on the chair.

Living with PTSD for me is basically feeling strange all the time, knowing and not knowing. The fact that I am a gardener is news to me everyday; I wake and think, What? I am a gardener? Where the hell did that come from? One minute, I was working in Rock Bakery, part of a wonderful team of great people. They were good days. I dropped James off at preschool on the way, I had fun with my colleagues, worked hard and was so proud of our shop, then, the best bit of the day - I picked James up from Nanna’s on the way home. And now, I am a gardener, where the hell did that come from?  Much of life is knowing and not knowing. Needing to feel like we’re in control and yet never ever being in control.

Shock and confusion aside, I do have actual news. News, that is, apart from the fact that I haven’t seen my son now for two and half years. This is not news to you, but, again, it is to me, and still confuses unknown parts of me in strange jolts and shifts that stab and jar. I don’t think we can understand these parts, long lost animal parts needing to hibernate, nest, forage, and perch somewhere with a view that doesn’t change too much. Days when everything is too much I sit in my garden or by a window, to just watch the weather and let it tell me when to move. This is what your body needs when your nervous system is broken. Taking part in the everyday race of life is just not possible. Also, being a highly sensitive type, as James was, it’s important to know your limits, to know when you’re getting full up. I wish I’d known these signs of over-stimulation when he was a baby; turning away, not being able to switch off, etc. Children, when still young enough to live by their instincts, are good at turning away. After school sometimes I’d ask James if he wanted to go somewhere, the beach, or to someone’s house. ‘NO.’ That was it. He didn’t need a reason. He just said, NO, immediately. He was only 4 years old. He’d been taking stuff in, soaking up and learning, since 6 am! He now needed to just sit on the sofa and eat a digestive. But then he’d have me yipping in his ear - ‘What did you do at school, tell me about your day?’ 

‘NO. Can’t remember.’ I am smiling as I write this because I loved his certainty, his unapologetic refusal. He was processing it all. He didn’t want to talk about it. James would have been nearly nine now. Starting a new year of school. What would it have been like to have a nine year old son? I’ll never know. Instead I shall imagine him being six forever. There is a poem about that. The brave and brilliant, Marion Lambshead read it at James’ burial. She was our celebrant for the funeral. (She refused to charge, as did Bray’s funeral directors.) It was the 15th April 2021. Midday. A sunny blustery spring day. She had to read it quite loudly, over the sound of our hearts breaking, through the sound of a keen breeze in the enormous sycamore, tossing its head above us. She read it as my brother and husband lowered James’ precious body to his place of rest. When Marion finished reading the poem she burst into tears. What a woman. What a job.  I imagine myself in the memory as an actor, an empty shell, there but not there, numb. Knowing it was happening, but not really knowing. I can’t connect to the emotions in the memory. I feel like I am making it up. I feel like I am a ticking bomb sometimes, waiting for the funeral to come to me. We might want to hide from these sorts of memories, forget, push them away. But they are huge moments in our lives that change us forever. I wish I could go back and be there, really there, take it in.

Here is the poem Marion read, chosen by Elise and Lara Edwards, wonderful cousins to James. They adored him, and he adored them. 

Now We Are Six by A.A Milne

When I was One,

I had just begun.

When I was Two,

I was nearly new.

When I was Three

I was hardly me.

When I was Four,

I was not much more.

When I was Five,

I was just alive.

But now I am Six,

I'm as clever as clever,

So I think I'll be six now for ever and ever.

A. A. Milne. "Now We Are Six." Family Friend Poems, 2006. https://www.familyfriendpoems.com/poem/now-we-are-six-by-a-a-milne

Tears take toxic stress hormones out of your body, so we must let them out, and in five minutes we’ll feel ready for another dose of life. Google the benefits of crying. And cry whenever you need to!

Moving on to less sombre stuff I have been meaning for weeks now to say an enormous public thank you to Reece and everyone at The Ship Inn and to The Swan, Wadebridge, and The Panda Inn, Lanivet. The tremendous raffle these pubs put on to raise funds for Brain Tumour Research was a huge success, raising a whopping £3000. And this is the even greater news - because they raised over the amount it takes to run these centres for one day (£2700), we have been invited to go to the opening of a new Brain Tumour Research Centre in Plymouth in October - where a plaque bearing James’s name, will go up on the wall outside. Brain tumours kill more children and adults under the age of 40 than any other cancer. Simon and I really want to thank Reece for all his efforts and everyone for donating so many brilliant prizes, and of course all you wonderfully generous people for buying tickets. I hope you enjoyed your prizes. The cost of living has affected everyone. So many are struggling with this hard life and spare cash isn’t a thing. But thanks to you, ‘James Edwards’ will now be written in stone outside a new centre and you have all helped to raise awareness and funds for research. We live in hope for cures. Thank you again from the bottom of our hearts - it really does mean a huge amount to us, more than words can say. 

I have shared here some precious images of James’ only holiday. It was so strange seeing these photos up on the wall behind the bar in The Ship Inn. Reece and all the staff really made so much effort. We went to Skiathos in Greece - I think it was May 2019, it’s all a blur. I know he finished six weeks of radiotherapy on the 23rd December and it was after that. This holiday was made possible due to all of you who donated to our Go Fund Me page at the time of diagnosis in 2018. On the holiday, James was so well. You wouldn’t have known anything was wrong. At that time, the cannabis oil really seemed to be giving him a wonderful quality of life. Also, of course not denying the huge benefit of radiotherapy. It really is time the government harnessed the complementary nature of cannabis to cancer treatments. As I say again - eating, sleeping, pain relief.  No predicted nausea, no low immunity.

We posted our heavily disguised cannabis oil, (inside a book with a chunk of the pages cut out) to the hotel in Greece, calling to let them know someone was posting a parcel for us. Imagine the relief upon arrival to find it had arrived safely. More than anything else on that holiday, James loved the food. Especially the fish. We watched him devour platefuls of deep fried anchovies, prawns, salmon, squid. He loved olives too. And he enjoyed the breakfasts full of cheese, local honey and pastries. He dipped a toe in the sea - decided it was freezing. He played in the sand, played football, ate ice cream. He was loved by the staff at the hotel. If you want child friendly holidays, go to Greece. They adore children. He was three. He was well. He was happy. 

More news on medicinal cannabis. In May of this year we were invited to speak at Cannabis Europa Conference at The Barbican Centre in London. It took all we had and left us empty for days. It was terrifying, but a job well done. The panel was chaired by Sarah Sinclair of Cannabis Health News, online magazine. I was on the panel with Matt Hughes, co-founder at Medcan Support, who’s son lives with severe epilepsy, as does Hannah’s son, who was sitting between us. We spoke to delegates and journalists from around the world. I was holding a microphone in my very clammy hands. Simon was sitting at the front, holding James’ monkey. Public speaking is my idea of hell and I’d managed to avoid until now. There was a big screen showing photographs of our three boys. I was asked if we thought the palliative stage could have been improved if cannabis was medically administered. I remember feeling I’d gone too far, seeing Simon’s face, talking about James’ death; how the use of a drug called Midazolam, to relax him, sent him into an unexpected coma from which he never woke. I looked at Simon and he was sobbing and then I realised everyone in the room was crying. I glanced over at Matt and Hannah and they were both wiping tears from their eyes. We are living their worst nightmare. Afterwards we were caught in a swarm of people wanting to talk to us. As I said, a job well done.

I have recently received an email from Matt. Two things - firstly, he asked if we would consider being involved in a BBC Documentary about medicinal cannabis. And, equally as encouraging, would we like to go to the HOUSE of LORDS with him, in November, to share our story?

My reply - YES and YES! Yes to everything. Part of us wants to call it a day with all this. It’s over and James has gone. But something keeps pushing us on. We don’t feel we have a choice. And maybe it’s human nature to make something out of devastation.

I am sorry to repeat myself but I really can’t imagine going through those years of fear and dread without the incredible hope and optimism that Cannabis gave us. Doing it illicitly is not good. It’s lonely, it’s scary, it’s illegal, it’s not right and we must help terrified parents who are desperate to try cannabis, but feel scared and stuck, or just can’t possibly afford to go it alone. And not just parents, but anyone who could be gaining the medicinal benefits of cannabis.  Numerous people who have discovered our story online have contacted us through social media, desperate for help and advice. These were parents of children with brain tumours, cerebral palsy, adults with cancer, Parkinson’s etc. We are happy to answer questions about what we did, but should not have to be there for these people who have nowhere else or nothing else to turn to. We cannot advise, only tell our story. There are many different strains of cannabis. and different people react differently. James got on very well with it. We learned how to do what we did very easily online, as are many other people. It is ultimately up to them. But we must be brave enough to talk about it openly. People can contact Medcan Family Foundation Support. Go the following website: https://medcanfoundation.co.uk/

Returning to loss - I feel I am in danger of making this newsletter too long, please stick with me - I’ve had an idea. After a conversation with a close friend of mine I am inspired to ask if anyone has photographs of James or a tale to tell, even just a passing flicker of a memory of him. My friend said she has wanted many times to send me a photograph or a thought she was having about James, but was worried I might be having a good day and didn’t want to bring me down. I appreciate the enormous difficulty our loved ones have being on the margins. I reassured her that anytime would be good. I can only speak for myself of course, but honestly, the moment when I know that someone else is remembering James, missing him, grieving for him, continuing to love him, will only bring me joy, will only make me feel less alone. Please send me your memories of James. To see him from other people’s perspectives would be wonderful, as what I have is now limited. The thought of moving on and forgetting him is too painful to consider. I think we worry too much; that we are supposed to be getting better; because it’s been over two years now, it must be getting easier? But we don’t have to follow any rules. And I don’t remember what easy feels like. This is my normal now. To go back to an old life, not shaped by tragedy, would be far too alien.  The change in us is profound. I don’t feel like I live inside normal time. It’s a floating, drifting, foggy life. And that’s okay. Simon and I still look at each other every day, bewildered. We raise our brows and shake our heads in disbelief, Bloody hell, this really is real, this is our life. We exist on a cloud made of love and longing for our son, blowing this way and that, we find things to keep us busy. I can’t accept he’s gone but I can accept this is my - different life. We are not alone. People die all the time, yet, sadly we still find the D word so unfathomable. So please send any memories you have of James - at any time. You will not bring me down, only up. Even better, would be handwritten words that we could stick into a memory book. You can private message me for our address. 

A big part of loss is the relentless yearning and missing. When you are trying desperately to bring a dead person to life, to feel them, sense them somehow, you have to dig deep for memories, to really climb into a moment of what the essence of their spirit was. What was it like - to have that person sitting here right now? When you do it, you can kid yourself for a moment that you have been close to them. It really does work for me. It’s painful of course. But with the pain comes the love and its energy that does not die. It fools my body and I get a rush of warmth, a rush of that love. I remember he was fun and funny. Cheeky, clever, a lover of cuddling, of stories of laughing, excited for his day ahead, inspired to do things, make and create.  When I make time to get close to him, I get a feeling of deep wisdom from James’ spirit. It makes me want to get his paints out and know that he’ll be guiding my brush. I read the other day that you must continue to tell the person you love them, to send them your love.

My darling boy, I love you…

p.s I spy suspicious seedlings on the window sill. Just to say, we do not grow cannabis anymore. We wouldn’t if we could because it’s too triggering for us, but my mother misses it terribly for her very painful arthritis. House of Lords, here we come!

Thank you so much for reading and sharing our story.