A FATHER WHO'S LOST HEART

VOCALISING PAIN IS SOMETHING MOTHERS DO SO WELL, BUT THE MEN WHO STAND BESIDE US ARE AS BROKEN AND WOUNDED, YET SILENCED BY THEIR BELIEF THAT STRENGTH WILL PREVAIL.

I didn't know what I was going to write about this week, until yesterday when I watched Jack's 'facade' break and fall apart before my very eyes. I realised I should share my perspective on male grief.

The new year came around, it was sad and flat for us but the first day of the new year we woke up with a hopeful defiance. We agreed between us we would try to hold ourselves together, that we would focus our minds on our goals for the year, to grow Achroma, financially recover from two years of excessive toys, experiences and trips before Dexter would take his last breath and have no more life to live with us. We wanted to save, try again for another baby and Jack wanted to integrate back into work, take on part of his old life, while he split himself between Lush and Achroma. Achroma being the only place other than our minds where Dexters memory can live on, its not enough for either of us but its all we have.

We are nineteen days into the new year, its been 25.6 long painful weeks without Dexter and the pain of his absence has grown harder and harder to manage as the grief increases and peoples awareness of our loss evaporates. We have become experts in placing masks over our sadness, we can laugh and joke and pretend all is well when its not.

Now at this point in our lives, our families and friends are moving forward, I've had conversation across the board- where people talk about 'what we should take and learn from Dexters life and death' how lucky we are to have so many other children and things going on. all these chats sting and leave a layer of resentment, it again reaffirms that no matter the love they all felt for Dexter they have no idea how the grief and the pain changes and effects a parent or siblings, getting on with your life and not vocalising the pain, is just burying it, pretending and covering it.

The last three years have been the worst of our lives, Jack and I have exhausted ourselves looking for a way to treat and save Dexter and now we are exhausting ourselves, pretending we are ok only 6 months on, 25 small weeks since our son died with us by his side, unable to do anything but try to give him comfort as his tiny broken body gave up on his mighty spirit and his god like soul, he was the mightiest of beings we were blessed to call ours. But losing someone so wonderful has left a plethora of broken hearts, minds and people. No one is more broken than Jack.

The way I grieve is so openly raw and painful, I often cry at anyone who prompts or triggers me to talk about Dexter. Throughout Dexters diagnosis and treatment we would be put into small hospital rooms, where we would repeatedly be told the worst news parents can hear, I would sob uncontrollable, like the valve to my tear ducks had been obliterated by words. Jack would argue and seek other treatment options, combing through every avenue, mulling over any google search, every research paper, he would go into a mode where he believed he could find the answers our consultants were rejecting, the surgeries they weren't brave enough to try. Jack wouldn't cry he would plow blind belief and optimism into finding answers.

In retrospect I can see I always believed we would end up losing Dexter, I never believed that cancer was going to release our baby now he was in its clutches, I wanted to keep him forever, I wanted to believe we could win. Jack did believe we could win. Any talk of not winning, funerals or fear wasn't tolerated, challenging Jacks core beliefs, but even vocalising my fears, would summon agitation, anger and a frosty reception. Not because he wanted to cause upset but because he couldn't believe or face the possibility of losing. I think its because he comes from an entrepreneurial family, where they on the whole win, where their family is pretty lucky to not have a scattering of death or long gone relatives. I think every member of that side of the family, thought Dexter would be fixed, that his treatment was a means to an ends and then we would all get on with our lives. I think only until recently they have accepted and acknowledged that it was a battle we weren't destined to win and that's it, he's gone now. Too much time was given to unimportant matters and at the end it all came to nothing, at too bigger cost.

Jack has sacrificed a lot for approval and to build a career in a company that's always behaved as he's the son of someone important. He's worked more hours than he needed, to prove himself, missed out on nativities, days out and a lot of time when the kids were younger because he wanted to be taken seriously. He was stretched and pulled whenever we were welcoming our children and when Dexter fell ill, it reprioritised everything. Jack is the breadwinner in our household, as a male he has taken on providing for our family, its a big responsibility for any man, let alone when you have a large family like Jack and I.

When Dexter was diagnosed, Jack transferred this focus into 'saving Dexter' he saw it as his responsibility to ensure his safety. So when Dexter relapsed and we were shocked to learn our time was running out that we would have a year on weak, useless treatment Jack was mortified, we both were. When Dexter declined and scans showed after one round of chemo it was growing through the treatment, Jack was devastated on a level you can't even begin to imagine.

I was listening through Jacks phone to the zoom call between him and our consultant, that there was nothing more they could do that would be affective, without making Dexter's last days unpleasant and cruel on him. I could hear Jack crying, so I made the decision to stop all treatment and make the last days Dexter have the best. That decision haunts me a little, did I make the right decision? I know even though I said the words, Jack wouldn't have continued treatment knowing it would hurt Dex and not the cancer. But even when he was dying it was so difficult to not fight on forever.

We have five boys, the four that remain coping with the loss of Dexter are all coping with it so differently. Quill is given the gift of age, he has no true longing for Dex because he's only two. Oscar is 12 he is the most openly affected, crying and reacting to mine and Jacks emotions and our chats, is something he will relate and feel with great depth. Both Ethan and Felix are closed, not talking about Dexter and distracting themselves, with friends, hobbies and life. Ethan's a little more unreachable, being older, he is depressive in his grief, silent and brooding, stripped of his beliefs in science. It's broke all of our belief systems.

Jack is possibly the kindest, most attentive father I've ever met. He was tolerant and lovely with Dex, even when the cancer made him unreasonable, and Jack struggled sometimes wanting to deliver Dexter the best day, or the best of everything in every day, this sometime meant he exploded with frustration at the kids or myself or family because his grief was starting, he knew those days weren't going to last together, he didn't want to waste a second of it, but it was exhausting somedays for everyone involved. Jack and I would occasionally clash both trying to cope and care for Dex with enough room for one another, but really our roles as parents intensified, we were loving and caring for Dex with round the clock care to ensure his every need and desire was met. This left a massive hole in our lives after his death. Our other children, need us less, because they are older and independent and they all need us less in a much healthier way but six months on this is very apparent.

As time has gone on you promise yourself, you'll cope, promise you'll keep going because Dexter did, every day he continued no matter how heavy the pressure was to endure inside his tiny face, but pretending is exhausting and being is exhausting and the further the grief grows, the harder it is to hide. I've realised that losing Dexter has, weakened us all. You don't realise it until its something silly, like you can't cope with any blows, your just not strong enough to take any hits on top of the life your living. Works too much some days, family and friends wanting to see you, the thought of daily tasks or upsetting people sends you into a dooming spiral of paranoia, it's all a lot. The truth is, the way we coped with Dexters cancer was very public, we shared it and we shared him till the very end, it was the most personal journey of our lives and we shared it all with our close family and our dearest friends, I could never share anything more valuable with individuals again. It was an exceptional circumstance and we did what felt right and we coped because it all felt so right, but now nothing feels right and feeling weakened, less resilient and unable to live and challenge life as we once did is harder to admit and share, especially for Jack.

Being a man is harder I think in this situation, women grieve and share their pain with close friends and family, I'm very open and I share it with you. But I can't think of one person Jack truly sits down and leans on, despite myself. He isn't shut off as some men are but there is definitely less openness across the board, even in treatment nurses and doctors rush to offer support to mothers, fathers are fixers, doing things to try to overcome the sadness, being practical and pushing forward. I don't remember nurses offering support to Jack, I remember hard frank chats and stiff upper lips.

I'm not saying that every hospital was like this and we did have a nurse that would ring and come into Dexters hospital room to enquire how we were doing, but having some patronising nurse come and talk about something she's never personally experienced, nine out of ten times, this would piss jack off. I think if parents of children who have previously died, felt strong enough to support other families going through it, those parents would be more beneficial in listening and supporting these parents, something I would recommend charities and hospitals to employ. I didn't want to speak to the nurse who gets to take off her work hat, goes home to her healthy thriving three year old, I don't wish them bad things but they have no idea how the pain feels, the crippling loss and at the end of the day our family just becomes a memory at the back of a failure as they move on with the same shit promises, with the same half truths and the same poor outcome based on shocking old treatments that most of the time don't work, especially on the more complex cases like, Dexter's.

Jack and I are both starting bereavement counselling next week, 6 months after Dexters death. We'll get to speak to someone apart from each other, or without the judgement of others. The therapists are recommendations of Julia's house, they are a lovely charity and they have been kind to us, the nurses came in the last months of Dexters life administering medications. They try to support us, they dropped off presents for the kids this Christmas, took casts of Dexters hands for us, and yet it feels like what can anyone do, nothing because he can't be brought back, but I suppose she can help our minds, our anxieties and help us cope with the days, weeks months and years ahead without Dexter.

#rhabdomyosarcoma #childhoodcancerresearch #cancer #childhoodcancerawareness #grief #loss #childloss #mensmentalhealth #malegrief #dayswithoutdexter