The universality of all our lives is that they will end. We will all die, no matter what hot cross buns tell you, it’s inevitable and forever.
We may not be aware of our own preconceptions of our passing, for most of us it feels distant. Sometimes touched by that bumpy plane landing, or an emergency stop. Or an illness that lingers beyond our tolerance.
There are times when the loss of someone feels out of order: too young. Be that in pregnancy, at birth, a child, someone in their thirties. Robbed of a chance before that chance even presented themselves.
The rest of my life, however it pans out, will be forever marked by the loss of my babies, and my five, nearly six year old son. It is burned into all my cells, my soul. It hurts, often more than I am able to withstand. But withstand I have to.
With RD, our choice to not continue treatment wasn’t us wimping out. We didn’t give up. My battles changed from external to internal. How would we live without him? I was still fighting, right up to his final breaths in our arms, as to whether we had made the right call.
However, I’m not writing this to question our decision over our son’s life. That’s not up for public debate. I have seen and read more than I need to about the high profile cases recently. Mostly from people who have decided “what I’d do in that situation” having never been in that situation. All I can say, is this is wrong. I wouldn’t even cast my view on what they should have done, it is their choice with the evidence they had.
What I want to write about is a positive death experience. By talking openly about choices for RD, perhaps the stigma around not apparently fighting tooth and nail against the worst news any parent could wish to receive will stop. Or at least lessen.
RD’s life had been an uphill battle from the start. The minute he was born, I felt such overwhelming passion for him. We loved him beyond measure. Yet, we spent many hours willing him to pull through. To get home, away from the claustrophobia of the hospital.
He blossomed, yet frequently his body failed him. We fostered and changed our outlook when his cognition and development only ever grew in tiny increments. We always pushed for people to see beyond his obvious disabilities, see his soul as bright as a new penny. This included medical staff.
There came a point, as dialysis failed time and again, where we couldn’t keep putting him through it. It takes time for dialysis to stabilise the blood, and RD couldn’t understand not to pull at his dialysis lines that made him itch. He just felt pain and irritation. Every few weeks they would become infected, need to be removed and re-sited. Which is only done under general anaesthetic.
This was a cost of survival that we knew would worsen, and most likely, take him to the operating table where his ability to get life threatening infections at the drop of a hat would mean that’s where he would die.
Not in our arms. Not happy and pain free, but scared and traumatised. We couldn’t explain it to him, lessen the trauma.
From the moment we agreed with the medical teams to stop the path of treatment, I felt only incredible sympathy from them. They had come to love RD too, his dancing to the tune that signalled the end of his dialysis session brightening everyone’s day.
The hospice helped us plan every eventuality, be that sudden death as his potassium levels went sky high, or, as we hoped and achieved, minimal intervention and a comfortable happy last few months.
We were in constant contact with the hospice. They stepped in to get his medication right, even driving back to the hospital to collect some of them for us so we, as a family, wouldn’t have to return. For anyone who has lived a life in and out of hospitals, waiting for medicines from the pharmacy to be able to go home, the impact of this simple act is huge.
As the body deteriorates, it begins to slow from bottom up. Your bowels, and then your stomach are often the first to be affected. So, we began reducing the calories and strengths of RD’s feeds for months. As soon as he looked or seemed like he was feeling sick, we reduced them some more. This is not starving him to death, it is carefully caring for his comfort.
RD had a run of months where he lived and loved everyday, arguably the best days of his short life were in palliative care. We also did as a family, free from the chaos of intense medical care. We still forged against our demons. Were we still doing the right thing?
In August, I even asked the hospice to arrange bloods to be taken, as RD was doing so much better than predicted. Perhaps we’d got it wrong? It does happen- we’d known that medicine is fallible from our lives in and out of hospital.
It was arranged away from hospital. They called in a second opinion from RD’s old lead consultant from Manchester. That consultant travelled to our house on a Sunday to talk openly and honestly about our choices. He was kind, and open to debate.
In RD’s final week at the hospice, where he only rested with a syringe driver delivering a frequent dose of midazolam, a powerful sedative, he was calm. We played him music as he took baths. We held him in our arms in the garden, a gentle breeze and warm sun on us all.
We were fed and cared for as a family. We were allowed to just be together.
When RD died, it was still unbelievably shocking and raw for us, but he left us with a soft smile on his face. He looked perfect and peaceful.
Our lives have to continue, and we have to adapt to the pain and heartbreak. We have taken that pain away from my son, and so, for us it is one worth shouldering.
*I also know this isn’t always the care that is delivered, and I’m sorry if writing this triggers negative emotions. I just want to speak openly about our choice and ensure that this is delivered consistently*