This is something I’ve wanted to write about, but will admit to being scared. I’m not scared about expressing my opinions or my words, but because of the exposure to the hungry beast that is social and traditional media. Sitting, ready to pounce with vitriol. Opinions begets opinions. I have watched from the sidelines as more people have said “I can’t imagine what the parents are going through” or starting comment with “if it were me.”
Well, I can imagine. And I know what we decided in our unique case. That’s the crux here: conjecture is based on evidence presented and comparisons to other unique cases. Yet notwo incidents are the same: there may be similarities in conditions or questions over treatment, but ultimately we humans are individuals and this is so prurient in the case of rare disease.
So why write this? This post is in solidarity. In having experience, so I write this to post into the ether with the hope it may bring some comfort.
When RD was tiny, when he just wouldn’t grow, wouldn’t tolerate feeds, and every step forward was met with one back, I fought to find hope. Strength. Optimism. It was clear that he was in pain: for all sub 3 pounds of him he could silence beeping machines and alarms with scream after scream. He would vomit across the room.
I was petrified. My first born son was alien to any other baby I’d met. But every fibre of my being, every synapse of my body tingled with love for him. I willed him to improve, in spite of mounting evidence of poor prognosis. Yet, I was alsoscared for him to live if the pain would continue.
The evening of Boxing Day 2010, we arrived on the neonatal unit. I scooped RD up from his incubator, he let out an ear piercing scream and covered me in vomit. The sobs heaved from within me. We were living a life I could have never imagined, I didn’t want it anymore. I couldn’t grip onto the traces of hope and optimism. So I asked RD to show me. Show me he could do this. I whispered into his tiny neck, show me.
For reasons beyond my understanding, he did show me. It wasn’t down to different medical intervention.In a month he’d tolerated feeds and put on weight. The treatment for his kidneys seemed to have worked unlike any other case they’d seen and therefore one prognosis- that he would need albumin infusions multiple times a week- proved incorrect. The doctors were wrong.
RD left the neonatal unit for home after four months. Again, we had been told that this was unlikely. In that time, in the endless stretches of minutes sat at his incubator and then cot side, I had run every emotion. I had crested peaks of elation at improvement, battled despair when it felt like things were unable to get worse, felt gratitude beyond compare and the last one, anger. Such anger, at how unfair this all was for RD. For us. And every time someone got it wrong, I channelled that latent, useless anger at them. Doctors, nurses, professionals.
I couldn’t always see that they were just other humans, trying to put together their best evidence and experience and forge a way forward. Hospitals are fraught, noisy and busy. You feel as though you are the only case that should matter, blocking out the hundreds of insular crises happening around you. That’s the only way to get through. To survive as the bystanders to the one battling for their life.
In his five, nearly six years, we had with RD he fought against medical prognosis but our fears about lifelong disabilities became actualised. I had many conversations where I had to reel off all the list of things RD he could do, that he loved, so evident was it all the things he couldn’t. In that time we truly came to understand what quality of life looked like. RD’s label of life limited never left him though. In spite of appearances, his condition was deteriorating.
When we tried renal replacement therapy, and it consistently failed, it took me right back to the start of his life. Constant hospitalisations, where he was utterly miserable. At first I fought off any suggestions that the kindest thing may not be to continue. Anything else felt too awful to contemplate.
When we really looked at the picture in front of us though, I tried to think how RD was understanding this, being that his understanding was different to ours. We had come to learn that whilst RD could clearly react to discomfort and pain, or complete happiness, he couldn’t anticipate either. He reacted to what he was presented with at that very moment in time.
After another fraught night in a side room with RD, where he couldn’t be calmed from the pain he didn’t understand, I asked him again. But this time I realised he’d already shown me. The one thing I know though is it wasn’t giving up on him, it wasn’t letting go.
For us, RD’s lifetime was too short. I would still give everything to have him back, but only if I knew he would be happy. Truly happy, as he was when we stopped invasive treatment. I will live everyday missing him.
But for RD his lifetime was just as long as it lasted, and he left us with the balance of happiness versus discomfort swinging heavily towards happiness. He knew he was loved unconditionally. His short years were full for him.
I don’t know what I’d do in any other instance. I do know how it feels to fight, and I also know how it feels to gracefully step down. Both feel just as heroic.