I read an interesting article this morning on Films for Action by Louis Profeta, M.D. titled ‘How We Used to Die; How We Die Now’. In the article, Dr. Profeta, an emergency physician, discusses how we used to die in and of old age versus ‘our death-defying, death-dealing military industrial medicopharmaceuticalized culture’ of today. And it struck a cord.
We don’t have this conversation when it comes to children dying regardless of their diagnosis, prognosis, trajectory (if they are lucky enough to have one). Even the title for this blog, I wasn’t sure if I should title it ‘how a child dies’, ‘when a child dies’ or ‘should a child die’. Letting your child die…it’s a controversial and incredibly difficult conversation to have.
As the mother of a child with a life limiting, life threatening disease, who for the better part of 15 years, has been suffering from a rare, un-researched, multi system disorder I feel it is crucial to have this conversation. But few can listen.
In his article, Dr. Profeta paints a beautiful picture of an elderly woman propped up by pillows, in her own home…slipping beautifully and quietly into death ‘before we became blinded by the endless tones of monitors and whirrs of machines, buzzers, buttons and tubes that can add five years to a shell of a body that was entrusted to us…’
This is the same struggle I have and continue to have being responsible for this soul I gave birth to fifteen years ago amid alarms, ambulances, incubators, equipment. The struggle remains and I am constantly asking myself ‘am I doing enough?’ which then leads into…’when is enough, enough?’…even for a child. And what does ‘doing’ something look like and feel like anyway?
In the world of paediatric hospice care our family is surrounded by many many families on a similar journey as us; a child with a life threatening, life limiting diagnosis. My Facebook feed is full of these families ‘doing’ for their children…be it surgical procedures, new med trials, using invasive equipment, the list goes on and on. And I, by no means, am here to judge or criticize any one else’s choices. Our journeys are our own, they are deeply personal and each child is inherently different from the next even if they are diagnosed with the same rare disease.
Dr. Profeta shares that his article ‘is meant to be an indictment of a system that now herds these families down dead-end roads and prods them into believing that this is the new norm and that somehow the old ways were the wrong ways and this is how we show our love.’
The same could be said for families of children like my daughter…Sophia doesn’t have anyone researching her particular genetic disorder. And even with some of the issues she has and presents as, she is unlike most. While the physicians in our world remain baffled and constantly perplexed, I have to ask myself what do I believe in; a system that makes us grapple with endless, un-eventualized hope for technological advancement and shames us for not wanting to whore our time and resources to no end or one that promotes comfort care, supports acceptance and teaches being present like Roshi Joan Halifax’s teachings on ‘being with dying’?
It is and always will be a mother’s desire to ‘do’ for their child…to want to do everything possible to alleviate their child’s suffering. And it just isn’t natural to consider the hard truth that you will outlive your child. Why would we want to sit with that truth? It goes against every part of being a mother.
But that is the truth for many of us, it is for me…and as difficult as it may be, we need to begin discussing what ‘doing something’ looks and feels like for families who are gifted with caring for a child with a life limiting, life threatening illness. If you or your child decides that trach and vent isn’t the big panacea, or that particular surgery, or medication…that intervention isn’t something you want to ‘do’, how do you sit with that?
We need to start re-thinking what ‘do something’ not only looks like but feels. That it may not include equipment or invasive surgeries, lengthy procedures that may add or prolong our child’s suffering.
Maybe it is about providing your child with comfort care. Being able to take your child home to be with family. Letting them eat mango cheesecake morning, noon and night. Putting twinkly lights all over their ceiling. Giving them medications to help alleviate breathlessness, putting a fan on in their room to do the same. Giving them a good long soak in a hot bath when their bones and muscles ache from increased edema…stopping their feed when their gut can no longer process food.
And that sometimes…doing something is letting your child die. Die in your arms, surrounded by those twinkly lights, the remnants of mango cheesecake and the din of Taylor Swift in the background.