There is a particularly grim aspect of palliative care that I’ve been mulling over recently. I genuinely believe that the quality of life Mikaere enjoys is awful. While he’s often comfortable (daily seizures + vomiting aside…), his quality of life is not even close to what we ourselves enjoy. When you don’t put the seizures + vomiting aside – his quality of life is downright awful. Today Mikaere screamed after the seizure he had. The kind of scream that really hit you in the chest, that let you know what he was experiencing was painful, and he was desperate for it to stop.
Truth: I think that Mikaere would suffer less if his life was shorter.
Side note: I don’t plan on doing anything to make his life shorter, in anyway shape or form. I am his Mama and my Mama heart can barely comprehend that his life is limited, let alone consider shortening what little precious time we have with him.
But that’s the thing. If he had less days to suffer through, there would be less suffering. I genuinely feel like the longer his life, the more suffering he will experience. While I will never ever wish for his life to end, I also don’t wish him to suffer, or to live a life of seizures and less. Less everything, less control of his body, less awareness, less freedom and independence and joy.
On the other side, by doing my very best to give Mikaere the best possible quality of life available to him, am I prolonging his life and therefore his suffering?
By doing my very best, am I prolonging his life, dooming him to more suffering?
I feel like I’m between a rock and a hard place. I’ll always want to do the very best I can for him, to comfort and care for him. But I worry by pushing him through all the extra therapy, fighting for more drugs, closer monitoring, fending off every potential downfall, that in trying to alleviate his discomfort the best I can, I’m unintentionally extending his life which is filled with so much suffering and pain.
I don’t think there is an answer here. My mama heart wants to ensure my babies life is as comfortable and happy as I can make it, but logically, asking myself what I’m prolonging, to try look at the macro as well as the micro picture…
The palliative special needs life sucks so hard.
And then I think – neurotypical parents don’t do this. They don’t need to wrangle with the idea that their baby is definitely, 100% going to die. Whether their best parenting is going to cause their child to suffer more seizures, and vomits and painful everythings. That their child is going to suffer because of them.
Again, palliative special needs life sucks so hard.
Update: Here’s where I’ve landed with this – I don’t have an answer, but my Mama heart says I should do everything I can to help him live a better, comfortable and happy life. Sometimes that’s going to mean therapy he screams through, in the hope that long term it pays off (and I know, I’m gambling that there will be a long term). It’s going to mean to more awful drugs that make him vomit and suction catheters down his nose and an untold number of needles and blood tests. But I can’t do anything other than my very best to comfort him, and give him his best shot at life. I think I’m always going to wonder and second guess whether I’ve caused more harm, but hopefully, I’ll also know that I gave my best so he would know he was deeply loved.