Category: A story

Thank you to all who have read my book, and to those who have left comments in support of it.

The book, a memoir, written from my perspective as a father, talks about raising a child, our son, who has additional needs due to multiple and complex health conditions. I write about acceptance, challenges, realities of living within a society with prejudice and discrimination. I write about how we come to terms with all this and find those opportunities to laugh and love.

The book ends, at the global COVID-19 pandemic and the enforced lockdown. The impacts upon our son and on ourselves as a family trying to support him through it all.

Feedback, privately, through Amazon, Goodreads, Instagram, Facebook and elsewhere have been received and I thank everyone who has taken the trouble to write.

There is another story. A story to tell what happened once those restrictions had been lifted. And how, once again our sons routines were changed and his fears about reengaging with the world caused him so much emotional turmoil.

The story will continue with ‘Beyond the Garden’

As I picked up a medical manual detailing the brain and scanning—EEG, CAT scan, MRI, and others—I recalled my pre-retirement plans: to learn how to take a decent photograph, perhaps undertake a horticultural course, and even develop my animal husbandry training in support of the opening of an animal sanctuary, which had been a long-held dream of mine. It was a dream I intended to achieve to facilitate work experience and education for those who, like Marc, find life a little more challenging, and need additional support

Alas, plans change, as they do for many, and I never did do any of that stuff, instead, I find that my retirement studying is more geared towards medical matters so that I can understand and use my understanding to firstly, help support Marc, and secondly, to be able to talk with specialists and consultants in a meaningful way. And so also to be able to question and offer the inevitable reminders of how one suggested treatment can impact adversely on another condition he suffers with.

I guess, out of all this, came the opportunity to write as I sit so often alongside Marc, supporting him, and in doing so, maybe create awareness of hidden struggles that many go through. Not what I planned, but I can say that my shift in focus and has helped in our support of Marc, which, I firmly believe, has helped keep him alive, especially when told by more than one consultant, had he been in care, he would not have survived to the age he has.

Grass. That’s all it is. But not so long ago this area was decking. Decking that I had built to encourage and enable Marc’s to get outside. Stepping, or wheeling out in his wheelchair, over the threshold onto a deck that was at the same height as the threshold, brought so much more inclusion to his days. That project was a success. The months and years pass by and sadly, Marc’s health also deteriorates and the decking lay largely unused. Damp, slippery and dangerous, with its railings and spindles, it has also become something of a prison. With Marc’s poor eyesight, he could not see the colour and shapes of the flowers, lawns and trees, but instead, he just saw the wooden spindles.

Time for a change. I planned to open up the area, enabling Marc to see the garden once again and to be enveloped by the magic that it had once provided him.

And so started the next chapter to his story. ‘Beyond the garden’ will be based upon what we did next. Lockdown had changed our world and Marc’s in particular. His well being depended upon our encouraging his integration with the world once again to stimulate his mind and create those adventures.

Adventures that, as before, started in our own garden. We encouraged Marc to walk, or to be wheeled in his wheelchair around the garden, rediscovering those plants, statues and trees that I included as triggers for his memory to recall fond memories of past adventures and laughter. Each smile he shows, bring shim closer to wanting to embrace new adventures and experiences. The scent of the rose, used so often as I help calm his fears and focus his mind away from his anxiety and onto those memories. “Remember when … ” I will suggest to him. In time, he will calm and reply, “I remember” with a smile.

We pass and talk about the tai-Haku tree and our adventure to Alnwick Garden and the tree house. a scary moment that he recall vividly, but now, after so many years, and the help and support of to workers there, he can laugh about it

now.

Onwards we walk and come across the foxglove. “Do you remember the poison garden?” I ask. “We had to wait behind big, locked gates for the guards to take us around” He look sat me and smiles once again. “He had keys” was his reply. The smallest, almost insignificant detail recalled so vividly by him. “Just like Might Joe Young” he added making a link to keys being rattled by a poacher in film seen a long time ago.

It reminds me that Marc captures far more than we may initially realise. His autistic mind takes time to process the information he is exposed to, and may, for many days, weeks or months, make no mention of that topic again, but then, his memory is triggered and recalled as if it has just happened.

Marc’s story can be read in my memoir, Marc’s Garden. The challenges he has faced and how we found ways to support him and encourage him. Our garden was key then as it is now. I am writing about how we supported him following the lifting of restrictions after the pandemic lockdown and introduced him to a world he had forgotten.

It’s a story about going back to the beginning and helping him to regain coping techniques in a world that seems to have become even less tolerant and inclusive than we faced previously. I want to share our journey in as much honest and real detail as I can in order for those reading it may have a better understanding of its like living with multiple and complex health conditions and disabilities.

I was unexpectedly approached by a small group of people. A group including carers and carer support workers, and asked to read an extract from my book for them. I was taken aback, as I had no idea they were aware I had written one, or that some of them had even purchased a copy.

With one hastily passed to me to read from, I tried to put on my best reading voice, but not being an experienced public speaker, I wasn’t sure if I sounded credible.

I started, where the story begins, with the foreword.

“The end of the year is fast approaching, and I will bring in the new year with Marc tomorrow as part of our family’s First Footing tradition …”

The emotion of reading to an audience, all of whom were looking directly at me and eagerly waiting for my next words, took me by surprise. As I read, my thoughts turned to some already published comments I have received for my book, such as,

“I’ve only reached page 22 and tears are running down my face …”

Here I was, only on page twelve, and the memories and recollections of the challenges and achievements by Marc, struck me just as hard, with tears streaming down my own cheeks and a throat so choked that I could not continue speaking.

I apologised for the need to stop, then I signed the book I had been offered to read from and promised to sign more if the group wanted. Touched by the request to read and the moist eyes of those around me, I felt pride in having written the book and immense gratitude that my story seemed to have impacted others in this way.

Thank you all, I am humbled by your kindness. 

It has only been a short time since the publication of my book, which I was inspired and encouraged to write by many of you here, and on my other platforms.

I want to thank all of you who inspired and encouraged me to write about Marc’s journey, and I also want to thank everyone who has already read it and provided me with such lovely feedback. I apologise for the tears I caused, but I take delight in the laughter I inspired.

I am incredibly grateful to those who have shared that they have learned something new from my writings and gained a fresh perspective on disability and illness. Even if just one person expressed this, it would bring joy to my heart; to receive such feedback from multiple sources is a true delight and affirms my belief in the importance of sharing this story.

Thank you all who have followed our journey and our story, and for the part that you have played in helping me create this book

Foreword

Standing on the upper lawn, though late morning, I feel like I have just woken up. Awakened from a long slumber, from which my recollections are of constant nightmares. I look around me, the lawn is stained from our dog Bronte’s peeing, which I had not treated or diluted immediately. Yellowed areas are dotted all around, and in some cases, the grass has died back altogether. Lawn edges are no longer clipped and trimmed but escaping, inch by inch, creeping over the flagged, gravelled or brick paths. I see plants and shrubs waiting patiently, anticipating the care I once gave them, and may do again. Nature’s rewilding has already taken over other areas of the garden in my line of sight. The bugs and the beasties welcoming my neglect.

            I look down at my feet and see the outline of the wooden steps. I have paid no attention to the sleepers that have weathered and cracked over time. The gravel path I had laid where these steps lead to is now covered in weeds, and there is only a faint indentation to suggest there was once an accessible pathway there.

            Why have I been so neglectful? Where have I been? What has suddenly awakened my senses from this dark, nightmarish place?  Our garden was once my pride and joy and the basis of so much help and support for our son. The many days we spent out here, in mindful activities, calming his fears and easing his pain. His anxiety and pain that I somehow feel have transferred to me. I have been lacking the confidence and resilience that I once had, and I reflect on the impact of the pandemic and the lockdown that we and everyone else had to endure. Locked away in our homes, even the garden had felt like it had become a prison to me.

            During the pandemic, there was an intense need to support our son through it, helping him to adapt to staying at home and not engaging in those small adventures that were routine for him and essential for his well-being. Although restrictions have been lifted, Marc’s reluctance to step outside due to his newly accepted routine of staying at home has taken its toll on me. He cannot be left unattended for a minute. Such is his battle with epilepsy. If I venture into the garden, he has to accompany me so I can constantly watch over him and encourage him to get involved with me whenever possible. His resistance to stepping over the threshold means that we stay indoors.

Day after day, a crow sat on the fence, just watching. Its eyes seemingly penetrating my soul, freezing the lifeblood pumping through my heart. Unafraid as I approached it, the crow remained unmoving, just staring. Memories, none of them good, of the crow’s mystical associations with doom flooded my thoughts. This crow appeared to be taking me on a journey into darkness—down a long, damp passage without light. Without hope.

Unwanted thoughts of regret course through my mind. I am grieving for something I do not have. I do not have the right to grieve. Do I?

Over many long weeks and months, watching my son writhe in tormented pain, from his relentless seizures, unable to help him other than to hold him. I hoped that I was comforting him at times, if only by my presence, but suffering a father’s regret of not being able to do anything tangible to release him from his burden. Each day, several times a day, he needs more and more support. My life seems to involve nothing more than forever kneeling at my son’s side, trying desperately to bring him comfort. His seizures cause him to strike out. He strikes me, claws me, and knows nothing about what he is doing.

I take a short respite from Marc’s care and walk into our neglected garden. The crow sits as it always does, watching and chilling me to my core as it stares, as if waiting for a dying soul. My dying soul. This is relentless. My journey down into this dark place has gripped me, sucking all optimism out of me. Was this what fatherhood should be like? Why was I not blessed with the son we had thought we would have? Would I regain any happiness in my life? The darkness increased, and all hope was now completely drained. Shut off from the world as we were, I withdrew into my dark thoughts. I deal only with the essential needs of care for our son. Cradling him through his fitting, cleaning him following his incontinence, talking or singing to comfort him. I am not eating correctly, not seeing anything positive in life, but praying for a permanent end to this feeling.

However, while crows can represent death, danger, misfortune, and illness, they also symbolise rebirth, self-reflection, intelligence, and loyalty. As such, they can be both bad omens and, conversely, good omens. My mind was in such a dark place that I assumed Hades had sent the crow to pick over my carcass after watching, with a touch of humour, my suffering.

I have now realised that this crow signalled a change in our son’s health. He will remain seriously unwell, which is inevitable, but the dark place he was in appears to have changed, too, and gradually, a smile has been returning to his face.

I feel guilty now that I was feeling so low. In all the years since we were blessed with the arrival of our boy, I have never felt this bad. We are told by experts it is okay to feel this way. It does not feel okay, but is it wrong? Mental Health have become buzzwords in today’s world, but they are not just words, and the pain attached to it is very, very real.

Slowly, as the invisible pendulum swings in the opposite direction, our son’s health stabilises again, we gain a more optimistic outlook.

            As I stand in our garden today, I recognise that I have been blessed with some kind of reawakening. As I look around our wasted garden, I grieve for its former beauty—the colour, the scent, the calming movement, and the birdsong. Today starts its rebuilding, and once again, I will use what I do and create to aid our son’s well-being. And my own.

(Provisional extract from ‘Beyond the Garden’. Volume Two of the, Marc’s Window memoir series. Continuing the journey started in ‘Marc’s Garden’ which was published on 8th May 2025)