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Writer's pictureTatty Von Tatchenstine

DAYS WITHOUT DEXTER

Our wonderful Dexter died on the 27th of July, 2022. It was harrowing and hard, nothing like Jack and I had ever expected or experienced and probably never will do so again. I feel so angry that it was so hard for Dexter, his strength and determination working against him. He fought as hard not to die as he did to live, it was brutal and heart-wrenching, and it will stay with us forever. Dexter left the world as he came in, with Jack and I at his side, holding his hands and stroking his hair.


We were told that Dexter wasn't aware of what was happening to him, that it was way more distressing for us, but I think what do we know, no matter how high they made him, how do we ever really know what Dexter felt and experienced, the tumour was so cruel in the end, he was trying to talk to us but was muffled and unable to where the tumour had grown. I will ever feel the bitter sting of resentment of what that tumour did to our mighty Dexter; he endured and endured. He went through more than should have been asked of him, and I'm sorry it was worthless in the end.


I had known the week before the day death would come, and still, that following Wednesday, when I rang the nurses, I had no idea that the change in Dexter's breathing was a sign that things had dramatically changed. The house was unusually quiet, all the teenagers were out, and Trixie and Quill were at the park.


Jack and I listened to a soundtrack of soft relaxing tunes Dexter had loved from the Pixar movies, the hours that came lulled under distorted time, and I can't bare talk about how dreadful it was in that room. I don't think I'll ever be able to share what Jack and I saw, felt and heard. It was the worst day of my life, and some part of me died with him that early evening. 17.45 pm, Dexter finally left, I watched him fade before me, and I felt nothing but sharp pain and loss as I tucked Crackle into his chest. His body was fragile and battered from the fight. Looking at Dexter in those last moments, he was barely himself, and I can't believe how far he had come from the happy, chubby, cheerful boy we had grown and nurtured.


Anyway, right now, it hurts me too much to think of the last days of Dexter's life. I love him so fiercely I'm struggling to accept that this year has gone the way it has; Christmas just gone. I had no idea the March scans would show such devastating news and that by July, our sweet boy would have left such a large hole in our lives. I can't bear to be without him, but I can't dare give up on joy and happiness because it dishonours him so much. I'm conflicted by the guilt and loss of enjoying life and moments without him, and yet living in the past isn't enough to comfort the pain and his absence. There is just no winning.


The three weeks before the funeral were surreal. I believed every day that he would walk down the stairs, his little rucksack in hand. It felt still without him. He had such an energy in the house, all of us gravitated around him, longing to help and bring him a happy day, we were all so aware of the continuous pain and agitation he was enduring. We tried our best to reduce any irritations or stresses on a daily basis. Trixie asked less and less to play, and Quill was gentle and loving towards him. In the last three weeks of Dexter's life, all he wanted to eat was Wagamamas kids Katsu with ami sauce, with three pots on the side.

I would either get two in one drive or go every day. The 20-minute drive across town to Bournemouth because I knew even if he ate three spoonfuls, he still believed he was working towards fighting bob the fucking stupid, vile evil blob.




Those days were difficult; it was painful and frustrating to see dexter deteriorate and fade from his happy self. The days we'd had where he had been well, and lovely were long gone. It was daily visits from medics and nurses, and there was no going out of the house. It was just together in the last two weeks, and where the tumour was growing, it was causing cerebral irritation, where the pressure was building up. Our cuddly boy couldn't bare to be touched, he didn't want to be held, his skin was over-sensitive, and he was fearful of the port that attached to his medication driver being pulled, so we were robbed of any comfort and closeness to dex, I found it particularly painful, he'd still allow his dad to carry him, but I wasn't of much use, I felt redundant. All I wanted to do was hold him day and night, I just wanted to bring him comfort, and there was none to offer.


I don't think the medics and their support workers can support a family like ours properly; some were lovely and respectful of the closeness and our ongoing protective care, we didn't want dex to be in pain, but we did want him to have the opportunity to be present and still enjoy his family, but some of the medics were clumsy and ill worded in how they felt Dexter was being strong for us when he didn't have too and shouldn't have to be now. Jack and I disagreed that it was a choice for dexter; his nature was fierce and stoic; he wasn't pushing on for us but for himself because he loved being with his family, being with all of us, and he didn't want to lie in bed, he would join us in the lounge, till his very final days. The medic still makes me angry when I think back to him; he hadn't been involved until Dexter was in palliative care, not seeing how he had stoically battled, not truly grasping his character and understanding the power and strength in our family unit and what it meant to Dexter being the heart of our family. Dexter knew his time with us was limited, I think; looking back, listening to the little sound bites he left us with. he squeezed every second of life out of the time he had, his friendships were intense, and his relationships were either fiercely loving, or he put little effort in, depending on the value. He wasn't wasteful of time.


When dexter left us that evening, we burnt the 5000 cranes to protect his soul, and it was a peaceful moment between ourselves, the kids and our parents. Whether they flew his soul to a safe sanctuary, I'm not sure; after what I witnessed, any sense of spirituality and beliefs I had have petered out, cold and as dead as Dexter's lifeless body was in the Chapel. I believe we are turned off, that we become nothing, our life force is released from its wilting vessel, and maybe that energy remains, or maybe it just dissipates. Religion, in my mind, is for those not brave enough to face the truth that we are machines with limited time, that we have a life cycle, and there is no proof of anything beyond because there is no evidence there is. I am not saying lay down your crosses and follow me, the leader of the damned and the fallen, be non-believers and join the dark side. I'm just saying I've personally seen the cruellest death of someone innocent and pure, and it's changed everything for me. I'm not frightened to 'not believe' anymore. I think this hell is far worse than anything waiting for me. It's up to you. It's your choice, but leaning into religion and the idea of a maker who dealt my sweet baby a tumour that stole his life, that rendered him unable to talk as it grew into his airways, I can't believe it was a decision and not just a glitch in the universe, all question marks have been removed for me, and I'm happy believing Dexter's place was only and is ever with us because to think of him somewhere else, wondering why he wasn't allowed to stay with a family and in life, he loved so passionately - is just too much to take.


Being a family of so many, we all dealt with Dexter's death so differently. Trixie went around telling everyone dexter had died, a brutal harsh delivery that sucked the air out of my lungs every time I heard it, But we all knew that she was trying to process what had happened. How was she meant to feel like; a five-year-old that hadn't been able to play with her big brother for such a long time? Quill didn't really understand; being so young, he talks about dexter, and we talk to him every day about Dex.


The teens threw themselves into a summer holiday, supported by their friends and enjoying the freedom of fearing their brother would die any day to just the endless grief that wraps us all. Jack put his effort into the Lego wreath I had imagined, and he did his best to make it happen, which he did.


Dexter's life was made all the better for his best friend Herbie, who has struggled without Dexter as much as all we Von Tatchenstines have. Wrapping him and his family in the warmth of our family has been natural in these weeks because they have been a huge part of our lives during Dexter's fight. Dex loved Herbie, he kept him going, and he was to be included in everything leading up to the funeral to ensure he knows he forever has a place and belonging within the Von Tatchenstine family, regardless of us being without Dex, he is special to us because he and Dex were so similar and Herbie did so much for Dex in his short life. It was only natural Herbie would be included, and his letter was perfect Dex would have adored it.




The wreath took three weeks; all the family helped, but Jack slaved away on it night and day, its beautiful and says so much about dexter, his love for lego and everything he loved, Marvel, StarWars, under the sea and sea creatures, Ninjago, Mario and DC superheroes.


I distracted myself by compiling all of Dexter's beautiful artwork, trinkets, and life documents. I sorted out the death certificate, and the Funeral and wake became my focus. I knew what dexter would love. The funeral directors said it was first a child coffin being black and lined with purple, but that was so Dexter. O Hara's were so caring. They allowed us to visit dex; they looked after him with such care as we had in life. It was weird seeing Dex still and cold; it just didn't feel right. In life, Dexter was so animated, warm and loving, this wasn't even a fraction of him, and it brought me little comfort.


Dexter was to be buried on what should have been his 8th birthday on the 18th of August, 2022. That morning we had birthday pancakes and the children had presents that dex would have loved gifted to them on his behalf. Our parents came over, and we made the best of the morning. Trixie wore her new dress, and the kids did their best before we prepared for the afternoon funeral and a late afternoon wake at the family's country estate.



Jack and I have never been more proud of how they managed to hold themselves together that day. Dexter had been taken from all of us, and the pain of losing a sibling, no matter how prepared we had all been, is something I can't imagine. Our children are stoic creatures, and we love them deeply for the support they gave us. The von Tatchenstines pulled together. We showed that even when hurt beyond repair, vulnerable to our core, we are stronger as a unit than most could wish for. The carriage that pulled Dexter's coffin was covered with a spray of dark velvet roses and purple flowers, Dexter's favourite. Four beautiful black horses pulled him, it was elegant and a spectacular sight Dexter would have loved, he was a massive fan of My Chemical Romance's "Black Parade", and it was fitting to give him such a funeral march.



The church was filled with Dexter - supporters of him and our family. We felt the love as we took him down the aisle ourselves. Our last walk together as a family. I didn't see faces, I didn't see who was there, but I felt the support. The day was as I had planned it. The eulogy jack and I wrote honoured Dex completely, candles stood around him and the sobs of his siblings filled the church. It was our goodbye to him, and it felt detached. I couldn't imagine him inside that tiny box, and I just had to go through the motions like a formality. It was a formal performance that we must do to mark loved ones passing, but really inside, you want to scream and kick like a child, hoping it can be undone, and it's not true.





As we followed Dexter out of the building, it became apparent how many had come to show their support. I looked back before I got out of the car and was taken aback by the masses that had spilt from the church. It took my breath away. From that moment, I felt like the worst was done. We had told the world it was true: Dexter was gone, and his life with us had ended. The Wake was to celebrate, to throw him the birthday party he had deserved and to see and speak to all the loved ones we hadn't seen for years, thanks to covid. How sad it was that Dexter's death had to be the reason we brought so many together.




The wake was outside, and it was the send-off I imagine dexter would have enjoyed; he'd have run around with the kids under the festoon lighting, eaten nothing but cake and sweets and got drunk on coca-cola. It was lovely to see all our friends and family that had travelled so far to be with us. It was again conflicting, drinking and enjoying everyone's company, knowing deep down we had left our baby's lifeless body in a crematorium, ready to be turned into ash and returned to us; how is this right? How is this something that happens to a beautiful soul like dex? How could we not win when he did everything, and we did everything we were told to do by medics? I'm angry and so full of resentment, there are so many god-awful people in this world, and yet innocent little Dex was torn from this life in the cruellest way. I want someone to hurt for him, I want to hold someone accountable, and I want the world to know that having him taken from us has forever left us damaged and hurt. Nothing and no one can ever replace him. He is irreplaceable.



So that was that. Dexter died, and we celebrated him, and we cremated him, and no day is worse than the day he died, but the longing and emptiness that follows the days after a funeral are unexplained and not talked about. I thought I had accepted he'd been gone a month. It's a month since we've held one another, chatted, fetched him drinks and tissues, snuggled him into bed and watched cartoons with him, I thought I had reluctantly adapted, but two days back, when I marched into the funeral director, ready to bring dexter home, it wasn't until he passed me a drawstring bag with a box of ash in that I realised that what this is it, this is what it comes too, someone has burnt my babies body to ash, and this is how he's returned to us. So shocking, so cold and unanimated, so lifeless. It brings no closure and comfort, and although this is now our life and we have so much to go on for and enjoy, we are forever changed because this isn't how it was meant to go. Dexter sitting on a shelf with Crackle in our house isn't enough. The photos and videos are not enough. His sweet loving words etched into our skin is and will never be enough; nothing but him alive will ever be enough. We can act like the person we were, and we can have a drink, we can smile, dance and function, but when we close our doors, every hour brings a different pain, a different trigger of a memory that renders us broken. We are now living two lives, one where we look forward to the future and all the joys it brings and another life where one foot is in the past, stepping back so we can still breath in the joy dexter brought us, we will move forward, but part of us will stay with him in the past forever, just as we will carry a part of Dex into the future he should have had.






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