I've not been writing at all in the last three months. Not in my grief journal or here and barely at work. I have to make myself write for the job, but anything personal, I've been blocked. I went to a clairvoyant at the end of march and she said I was blocked, by someone in the family having such strong hatred and ill will towards me, they were wishing me nothing but badness and poor fortune, but she said, that my own power could prevail, that nothing was going to stop the successes coming to me in my work and personal life, so fingers crossed and here's hoping. Either way I have had writers block because it's my outlet and I've been finding everything increasingly difficult over the last three months and I guess its hard to see how people would find reading my same whimpering pleas of despair interesting. The journey is what it is and we are where we are and this is me trying to reconnect with the community outside of my torturous thoughts.
I started writing this last night and this morning as I think of where we were this time last year. This weekend was the last weekend Dexter had been lively, I had been away for three days and I came home to a much sleepier Dexter, it was distressing but we had to hold it together, we didn't want to panic him, the nurses were in and out monitoring his pain medication and talking far too openly around him about the coming weeks. I was so shocked after we continued to voice that we didn't want to directly discuss death with Dexter, he was only seven and we didn't want to frighten him, but Dex wasn't stupid and I think often of him sulking during their meetings and him saying to me he didn't like the way they talked. I often think now should I have openly said "yeah, you're dying"? I didn't want to, because I didn't want him to be frightened, he would often have nightmares about being on his own and unable to find us, I just didn't want to taint the last few weeks of his life worrying. But other parents I know, their children and them spoke about it, but I didn't feel like Dexter would have coped with it. An insensitive palliative care doctor that we nicknamed 'Dr Death' wanted to visit during those end days, and it didn't sit well with Jack or I. He was experienced in end of life care for children like Dexter and was very keen on sedating Dexter, filling him up with drugs so he didn't't know what was happening anymore long before his final hours, whereas Jack and I wanted as many real days with Dexter as he could manage. Listening to that condescending prick talk about children being brave for their parents, and how Dexter shouldn't have to brave for us anymore angered us beyond measure. This guy had met Dexter on two occasions and was judging and assessing our child and our parenting. This was mid may, Dexter was actually far more himself once the pain management had been lowered, their over medication had ruined our trip to Disney where they had been too cautious and under estimated his pain threshold, causing him to feel nauseous and sleepy. No one in this world knows our children how we do as parents, if you're in this dreadful situation, my advice to you would be don't let them scaremonger you into anything just because they do it all the time, because they don't know you or your child like you do.
Focusing on living instead of dying is what kept Dexter going. Myself and Jack, and everyone of our children, grandparents, our closest circle, we all poured love into Dexter. The medics said their is no doubt he lived triple what they had predicted because of the love we invested into him and I really believe that to be true. I just wished it had kept him living for years, rather than weeks. I'm still grateful for every moment with him.
I still wish I could make a deal to switch places with Dex. It crosses my mind most days as the pain is ever increasing and I'm frustrated, waiting for him to come back. The rational part of me knows he's not coming back, but every day feels so difficult that I feel in the core of me, how is this it forever? Of course it is and it's the end of someone and the love of someone so wonderful. It's been 339 days since I last saw or spoke with Dex and now the cliches and comforting words are falling on deaf ears as we move closer to the anniversary of his death. That traumatic day ruined our lives. I see no positive outcomes from it and I can't believe in there is a shadow effect of life without Dexter that has granted any gifts or joys, for The Von Tatchenstine's, it's shattered our hearts and wounded us so deeply it torments our days and dreams.
Of late I have been trying to use the art of distraction to control my mind, control anything in this life that I feel so lost and untethered in. I throw myself into life, I push forward for my living children, they bring me joys everyday. This month we had a huge celebration for my mother in-laws 70th birthday. This came with its own challenges, drinking and partying in the grounds of Dexters Den is incredibly hard without Dexter - but it almost feels dishonouring to not go to the lawn he ran around with his friends and siblings on and a house he sat and played video games in.
I've been working hard on building Achroma, it's a deep love for the fantasy dragon world Dexter now lives in my imagination. The sting of his absence forever pricking my heart and filling my eyes with tears. As time goes on, less and less matters to me though, trivial dramas are inconsequential and its hard to see the stress or worry in most things now. I guess when the worst has happened, losing Dexter has change all perimeters and perspectives of the life we used to have and now I just feel it's easier to see everything for what it really is. Its like a veil of consciousness has been lifted and I can see things I may not have seen previously.
Jacks birthday and fathers day within a week of each other cracked open the pain I hold internally every day, weirdly I hold it physically in the top of my arms, I feel Dexter in the very part of me that would hug him. I am desperate to wrap my arms around him and this has been a tearful couple of weeks so the arrival of chats with DreamHaven and Glastonbury, was a big week of eye opening experiences and on the whole I managed to bottle my tears, only on the last day as I sat with Jack listening to the beautiful tones of Cat Stevens, my heart felt heavy. I said to Jack, even the biggest UK festival can't remove and give me relief from knowing he wasn't in this world any longer, having to go home and him still not be with us seems unbelievable.
Time away from home, is defiantly refreshing for Jack and I as it's a little struggle everyday being in our house, but we can't leave our house so sometimes you need a breather from the heartache. It was my first time at Glastonbury, it was full of stimulating music, great outfits, broken feet from hours and hours of walking the 900 acre farm and drinks. I loved being with friends, I loved being with Jack and the children enjoyed the independence of being home without us.
I hadn't expected to go to the festival so I had booked a three day break to Paris which tagged perfectly on the end. Here the exhaustion set in, and the anxieties built up as things quietened and stopped being so busy I couldn't box up the my thoughts any longer. It was naive of me to forget that I hadn't been on the Eurostar since we took Dexter and the kids to Disneyland Paris, so frail and ill in his wheelchair. Jack and I quietly struggled in the queue with the unpleasant memories of that journey flooding my mind. I tried to shake it off once on the train, physically exhausted from three days of extreme walking, I slept the entire journey, escaping my thoughts entirely.
Jack and I went to Paris 15 years ago, it was a two day honeymoon and we had always hoped to return, this was the time. It was beautiful but like everything it had sad moments. I slept in France, full nights, I haven't been sleeping well for the last three years but here I slept with ease and relaxed, and I dreamt of Dex, for the first time in 330 days. It was lovely to hold and love and hug the baby image of him but it was so emotional waking and knowing that I was in a world where he no longer lived, especially when that dream felt as real as the seven years I had with Dex. The tone of my return home was set, the waves of grief washed over me, the intrusive thought of Dexters death cracking open the raw hurt as it played out in the back of my mind, the movie I wish I could undo, that I wish was made up, but it's not.
Now back in normal life, we are in July, the month that only represents the month our baby died now. I hate this time, I don't really want to face it. I find there are struggles that arise in most days, little things that represent Dexters absence, a film he would have loved or seeing his urn makes my gut wrench. I feel like no day has ever hurt me as much as the day Dexter took his last breath and as the anniversary creeps up, I just feel like will nothing change? it changes nothing, it's just more time. the time keeps ticking on but nothing gets easier.
Now home I've realised I need to get Dexters story out of me, I'm going to write it because I can't change the system, the large NHS machine, that works under confinement's of policies and protocols. I can't change It but I can make others aware of what you're really getting into. What someone like Dex really has to live through only to die because the treatment isn't there, and what is there is a treatment so barbaric it slowly destroys you. So that's my plan to try and drag the most painful thing out of me and put it down properly on a page, even if I'm the only one to ever read it.
I have struggled to write the last three months as there's nothing new to say, no new fights and no positive angles or light to rise from the grief, I don't feel anything good can come out of Dexters death and therefore what's there to write? Well I've figured out, Dexter and his stoicism is more than worthy and I just don't know how any writer could do him justice but I thought I'd try. A little boy that is nobody to the world but everything to us.
I guess this is a bleak post, because it's about living with, managing and dealing with the same wound, that won't heal. I'm surrounded by so much love, so much life and I'm grateful but sometimes I think, what's the point loving so deeply when we inevitably have to all make the final destination alone and those left behind hurt for it. Even writing that sentence, knowing it's true, I wouldn't undo all the love I feel, give out and know because in truth really that is the only thing that matters, we all know that deep down. I didn't know what to write when I opened up my laptop. I've been feeling the raw emotions for days now, normally after a few days I can box everything away and continue with my life of continuous distractions, this past few weeks its been harder to do so. I know this waiting for it all to hurt less is a pipe dream but I have to manage it enough to continue working, parenting being a daughter and a friend. It's just so difficult and today on a July Sunday morning, It's the first day i've felt like I can't be bothered to socialise, pretend or leave the house, I think its ok though, to have days where I don't have to expend the energy on pretending for others and instead sat writing about my son under a duvet, on the sofa like it was a winters day. The only thing that could make it feel even more perfect is if Dex was besides me, the log burner on and Hotel Transylvania 2 playing on the projector. I miss the small moments.
Thanks for sticking around, to read, much about nothing really. x
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