The witching hour

WITCHES AND SPIRITS ARE RUMOURED TO CIRCLE AT THIS HOUR, BUT ITS YOUR OWN THOUGHTS YOU SHOULD GUARD YOURSELF FROM.

Those that know me and many that don't, know that I'm accustomed to wake during the witching hour. Trapped in the darkness with memories of Dexters 'death day' rolling and replaying in my mind, like a real life horror movie. The witching hour is known as the 'devils hour' among christians, believing that between 3am and 4am, the veil between life and death is at its thinest. I wish, but sadly the supernatural world isn't knocking at my door when I lay still in the glaring moonlight that floods through my triangular bedroom window. An awkward roof lined window into the night, framing the moon perfectly, highlighting the silvery edging of glinting spiderwebs, as my duvet moves across my body to the rhythmic snores of my husband. I look at him enviously in those moments, well with irritation if I were truly honest, he sleeps now, but I know he's been awake before me or he'll stir soon enough as no night is truly peaceful for either of us, any longer.

The darkness is soothing but my jarred REM cycle leaves anxiety and dread running through my veins and now the visions and thoughts have intensified around Dexters death. I think about how I didn't beg them to save him, how I accepted what was happening in the moment, because seeing him deteriorate was gut wrenching. I often think of visitations, wonder why he doesn't visit and the physicality's of what death really is, what it really means, how we think about death as something that's done, never what it took for that soul to sever their connection with their human shell, in Dexters case, leave a body and life he didn't want to part with.

The finality of death is hard to accept, what it means for that individual and the people who were present, for us it was a pretty rough initiation, it was not gentle and peaceful as I'd been lead to believe, it wasn't a good death, you'd want for your child. I had asked my mum if its always like that and she was shocked and horrified when we spoke about what happened that day, she said the deaths she had witnessed of her own loved ones had been peaceful, this makes me so mad, but im guessing that as an adult your body is more willing? From this I took that everyones experience with death must be so individual. After being greeted by death in such an uncouth and vile manner, I would be more tempted today to worry more about death than ever. I never gave it much thought before, not truly, with in-depth thought before the last few years. I have always listened to songs and watched movies with dark undertones of death, but words and stories are very different from what it really is, its like I've woken up and realised it's as traumatic and epic as birth. Before my mind saw it as something that just happens, maybe for some that is true, but not for many I fear.

When Dexter was first diagnosed, I would sob and my heart would ache as I tried to vocalise my fear, I was so frightened for him, not wanting him to be anywhere unreachable, or alone, without me. I felt I should be there with him, before him to ensure he'd not be frightened, the thoughts of him dying would send me into spirals of doom and sadness. A disturbingly deep sadness I can't put into words, it effected me deeply before, it would shake my insides and I would cry till I was close to hyperventilating. I think it was the realisation of the actual nightmare we were facing, and having no control to stop something so terrible, the absolute worst, I was and still am nothing more than a powerless mortal and I've been put in my place by death herself, thinking there was any chance to cheat her of who she had chosen. It was so foolish, looking back. I realise my mind knew the outcome all along and all that sobbing and facing my fears was preparing me, strengthening me for when the day would arrive. Jack wouldn't talk about the worst outcomes, he was hopefully so driven to save Dexter he wouldn't let any thought of failure weaken his will to see it through. Don't get me wrong, I faced treatment with absolute willing, I wanted to save Dexter with everything, but the niggling thoughts would corrupt my thinking every morning as I lay in darkness. The witching hour drew me in and has never let me escape it, now every day we greet one another, me with heavy sleep filled eyes and it with relentless quests to make me question everything.

Jack is no different, the witching hour is no kinder to him, but in the waking hours he'd shake it off like yesterdays dust. Jack and I have been best friends since our awkward teenage selves met in the summer of 1999 at a local drama group across from our current home.

Jack has always been fun, driven and sociable, a true extrovert, he was a level of fun that I adored having in my life so much, I stuck with him. Till death do us part. Although we assumed it would be our deaths that would part us, some days among the grief I can see how some parents can no longer function after their child's death and it all falls apart, we are working hard on not letting Dexter's death break us, and as we have 24 years of disfunction family drama training, we can battle through arguments with ease. I'm lucky that Jack and I found each other, that we built such an army of great humans and that the strength we have has stood us in good stead for this heartache. Jack is the light to my dark. He is the brighter better side of what is 'us' - Im happy to be the tortured writer, disenchanted by life and the horror. A pretend mask I love to wear, over my sensitive soft self, who would help anyone and leave the writing if something more important arose.

My true perception of myself then and still to a point now, is that I am a ' acquired taste' throughout my life I have always rubbed people up the wrong way, teachers, in-laws, siblings and some fair-weather friends. I'm not quite sure how or why but people develop issues with me, my parents brought me up saying people are jealous of me. To this day I don't understand this thinking, but now in my late 30's I would say, I don't look generic, think generic or build my life in a generic sense, maybe my love for oddities and the unusual was something the generic have disliked in me? Who knows but school was hell, our 20's was heavily judged and not well received in a family sense and that was hell and now nobody and their ill wishes or narcissistic behaviours and disorders matter, because now life is hell without Dexter and the rest doesn't even touch the sides.

Now I surround myself with creative fun and unique people, family dramas have fallen away and on the whole relations are good, those worth having are those worth loving. I don't want a beige life and partnering with Jack, has insured I've had anything but that. He is like living with a technicolour rainbow, his creative vision both in work and at home has been fun and amazing and the big thinking on his part and the love for children on mine have allowed us to build a big family and a full life, luck has been on our sides. We are still very lucky in so many ways, although our charmed life feels cursed since the end of 2019.

This is Jack and I in August 2008, I'm heavily pregnant with Felix, in our in-laws garden and we threw a pirate party for Ethans 4th birthday, everyday was a party back then.

I really used to think that I had a guardian angel, before Dexter died. I'd hoped they were watching over him as they had done me, I had been born three months too early and I had various health problems as a teenager and I struggled to grow our family and yet IVF was always so successful for us.Everything always seemed to work out, It felt like someone was insuring our success, though full of obstacles, we would always be alright and come out on top.

So when Dexter was diagnosed with parameningeal embryonal rhabdomyosarcoma, presenting in the nasopharyngeal area, I think at first we naively thought we would win, Dexter would have the treatment and he would get over it and get on with our lives. December 2019 the medics allowed us to believe this, but when January hit, they stopped sprinkling the sugar coating and portrayed what a dire situation we were in and how against the odds we were, but still the men in my life, Jack and my dad didn't let the bleakness of the situation drag their spirits down, they were driven to aid Dex though treatment, encouraging him with lego and visits during every hard thing so he never felt alone. I did feel alone, I had great fears that Dexter wouldn't live, the darkness I felt wrapped around the treatment and the way life was going, Jack found my approach of what I call ' facing reality' negative and he couldn't stand the negative thinking, I had played out Dexters funeral out in my mind, over and over for two years, hoping the movie would never be based on a real life story.

Anyway we know how that turned out and I'm dreadfully sorrowful that the outcome leant towards my dissolusioned resolve, rather than the hopeful and joyful resolutions Jack and my father felt about the strength of treatment against the cancer. I've realised that it was difficult to face that death was coming for him and of late its been torturing me again. I can't believe the day came and he took so much with him.

I struggle so much with the reality of Dexter being nothing but stills in photos and past tense in videos. I hate the gap in our lives, the absence on the school playground and the fact that life moves on without him for many, but not for us.

The day Dexter died, I hated it on such deep levels. I wanted the struggle to be over for him, but the reality of him stopping the fight was unbelievably shocking. For us to be with our baby, a person we made and loved with everything, to will him to let go was conflicting. For him to lose his life, the spark to shut down for his warmth to leave him was something my mind can't believe or conceive to be real. I can't tell you about that day, I can't vocalise how awful and tormenting it was but since, I feel very differently about death.

From being young, I don't know how we know or who told us but in the uk, we know and expect that one day our parents and our grandparents will die before us. We are told its the circle of life and this is rooted in our subconscious for so long, no matter the pain of these deaths, we understand and accept them a little easier, not completely but it's expected on an unconscious level. Not that the struggles with grief don't accompany them but we know and have always known those deaths will one day be paid. When someone is old and ailing. I can only imagine for those who must face that as children, when the roll of guidance and nurturing is cut short, this is a tragic severing, as we all imagine ourselves older when our elders leave us not as children or young adults.

Having our babies and children die before us is so devastating, before life has granted them a full hand, their hands in this life are cut short. I cannot accept it and I will never accept that my baby was robbed, that he had five beautiful years before he was subjected to treatments, surgeries and hostile hospital stays before an awful death. I imagine their are many parents all over the world feeling as we do, the struggle that they have outlived their child, when a child dies as adult, its still not the natural order of things and a cruel burden to carry, such a deep pain.

I'm bitter more so now than when Dexter died, now the shock has dissolved we're left with the grief and our minds, the cruellest thing as it turns against you whenever it feels and what better time for it to do so than in the witching hour. I wake every morning, I hope Dex will be standing over my bed waiting to talk to me, so far he's never been there and my views on spirits and guardian angels have drained to nothing. I know if Dexter was a conscious being or spirit he'd make his way back to Jack and I , but now I really believe we have our time and it is what it is.

I'M READY TO TALK ABOUT CHRISTMAS

This is my favourite picture of Dexter at Christmas, this was his last christmas, how can that be? 2021 the last time he got to hang the decorations on the tree. He wanted a grinch themed christmas, so we had lots of colourful lights and candy canes, nutcrackers. It was magical he told me, I'm more of a white light kinda girl but he and Herbie told me it was the best, so I feel happy we gave Dexter the best before he left us, a big Christmas to finish on. This Christmas was not that, I put the tree up late and drag my heart and heels on everything, even shopping for everyone. I hated it all, I was the grinch himself, my Christmas spirit died with Dexter and i'm not sure it will ever return.

Christmas was a harrowing time as it is for many families like us, its not the happy time it once embodied. It's now painful and sorrowful, exhausting and hard to get through. It hit us harder than Julys funeral and the weeks after, which I now realise was dulled and absorbed by shock. It took eight weeks, at least, to realise what had happened and as the times gone on, the grief that has descended upon us and the children and my parents is crushing. Dexter was fanatical about Christmas, he would decorate, buy presents and wrap presents to put under the tree, every decoration has a connection to a video or a picture, a story that linked it to him, the entire holiday was drenched in sorrow for us, the build up from day one was painful, the guardians of the galaxy lego calendar, tortured me, couldn't talk about it without crying. Let alone hold myself together everyday watching Oscar open and build the little models and place them around Dexters urn, its heartbreaking.

Each and every day of December I spent my time, crying in the car, swallowing my pain as I sat in the lounge looking at a memory tree we covered with glass photos of Dexter with all his loved ones. His friends and members of the family built beautiful moments to go on his tree, friends bought me lovely Dexter decorations and still none of it touched me, I could feel very little over the pain.

Christmas day was filled with mine and Jacks tears, it was lovely to see our other children all making the best of it but we all hurt. Six children at home but it became apparent how extrovert Dexter was, he would be so excited he would hype up the other kids, who in comparison are introverted and quiet. The quietness this Christmas was so unusual to us.

Christmas brings so many feeling up, I felt rage at people on the peripheral of our painfully devastating situation, telling us they were struggling and having a tough time, really are you? why? is what you want to say instead you mindlessly nod, like a nodding dog. When really you'd like to say to them, 'really are you struggling with the death of our son? Are you missing him eating cereal at the kitchen counter everyday, or seeing him lounge on our sofas playing the switch? Maybe, you miss seeing him wrestling with his brothers or seeing him in every corner of the house, sleeping in his bed, monkeying around on the stair case, no? No? No not that because you weren't in his daily life, you were on the edge? Sorry, yeah you missed the thought of him existing, missed putting him on your Christmas list and buying a gift for him?' But you don't say it, because who says stuff like that, even though people think it? Nobody because its unreasonable and you just don't.

It's just hard to relate to what people are struggling with, how they are making it their own, and sadness is something but struggling with his absence, any day is ours, its changed our daily life, every breathing waking minute. Our children miss chatting with him. We miss holding him, feeding him, caring for him and loving him, that's what grief is right, endless love with no person to gift it too any longer.

Our parents all struggle in their own ways, with the sadness and how it's effected the families. My parents were so close to Dexter, instrumental in his life to the very end. Its just too painful for them to bare and too painful for them to watch us, their children, struggle through the adaptions of all the ups and downs of our new lives. Watching helplessly as our children struggle isn't pleasant for any parent, particularly when the worst has happened and there's nothing they can say or do. It's a funny situation because we spend our whole lives looking up to our parents, looking for the right thing to do, but in a situation like this theres nothing they could teach us or advice on, there was just nothing anyone could do when Dexter was dying and it was so sad for all of us, the powerlessness to help was a hard place for our parents to be in, I feel. We had many emotional chats between us all over Christmas, to be honest most weeks we do but I do recognise it must be hard, being an elder, a grandparent in the last quarter of their lives, saying goodbye to a grandson who never got started in having the life he should have lead and on Christmas Day it must of been emotional for them all. We had decided to spend the day alone with the kids, it was too much to pretend to be happy. Every day is hard enough to be honest but Christmas emphasised the fragility of our hearts. I could barely eat my Christmas dinner, the roast, sitting without him hurt me so deeply, I sobbed more than I ate, silently while the kids pulled crackers and bickered while Quill tore up numerous paper hats, the chair at the head of the table painfully empty, there's always now one chair empty.

I could barely stand myself, an emotional unhinged woman, irritated and unable to tolerate anything, least of all others. I felt unsociable. To wounded to party, frolic and be cheerful. I couldn't pretend to like people I don't, I couldn't pretend to care about things, I don't care about and to be honest those things and feelings have followed me into January. Christmas broke something in me, I've been replaying the past two years in my mind, the diagnosis of Dexter's cancer, it brought out the worst in some and the best in many and now its all over and he's gone its settled and life as normal for some and all the drama has fallen away but the trauma and strife its caused made it all so much harder than it needed to be. Although I care about very little now Dexter's died, and by that I mean the trivial things, that extra stress in the last years of his life, I resent it deeply in the witching hour, I sift through all that went before and I realise how sad it all is.

JANUARYS DRIZZLING DAYS

I couldn't wait for it to be over this Christmas and the arrival of new year was no different , we slept through the countries celebrations, not wanting to welcome the start of a year Dexter would never live in.

Today we are 12 days into the raining, bleak weather that January brings us. The frustration of December has come to an end and now we are trying to focus our minds, save and spend less. We're focused on building Achroma, Dexter loved it and now its clear we've created a world he can be immortalised in it. It's not the same, but because it's painfully obvious it can never be the same. Nothing can ever be the same, not even our home.

Every room feels slightly uncomfortable, I don't want to leave here, Dexter was brought home here, spent his whole life in our home and he adored the house and garden, I can see Dexter playing with Herbie on the landing surrounded by lego and action figures, or playing with Dipsy and Charm as kittens in the black room, those are the ghosts I want to see but the memories I want to escape are of Dexter deteriorating on our sofas, curled up on his dads lap at the kitchen counter or him dying in his bed room. I'm not sure If those haunting memories live in me regardless or refreshing and making the house feel different would fix my restlessness. Its not something we can do just yet but its a goal to heal and rebuild, so I guess that's all we can hope for from the new year.

I hope this year brings some beautiful things for my children, for us, we need some joy - even though feeling it may be hard for us going forward. Everyday I keep reminding myself, Dexter was here, he wasn't just a beautiful dream.

#childhoodcancerawareness #childloss #greif #Rhabdomyosarcoma #cancer #dextersarc #familylife #bigfamilylife #heartache #lushlife