I had an epiphany today. It was after a night of sleeplessness on the foldout couch in the PICU.
My biggest fear is and has always been that James will suffer pain – that his death will not be peaceful. For some reason, I believed that we could somehow control his death, make it into what we wanted it to be.
But death is death. There is no controlling it. His body will choose how to let go, and I can only stand by and witness it. I can be there to hold him, to comfort him, to parent him until the very end, but I cannot control what he feels and how he feels it. We can strive to make him comfortable, but in the end, he will likely feel pain. This is an ugly fact that no parent wants to face.
All along, I have been so scared of him suffering. And today, I realized that I can’t control suffering. Not his. Not mine. Not my daughters’. Not my husband’s. We truly have no control over anything, although we like to feel as if we do.
Pain is a part of life. We have all suffered it – emotional, physical, spiritual. It reminds us that we are alive. There is no avoiding it or fixing it. He will suffer some discomfort and pain. I can’t do anything about it, but I will be there for him, so that he knows he is not alone. He will be surrounded by love.
Today, the cardiothoracic surgeons said that they would not do surgery on James. At his age, with the severity of heart failure that he is suffering and the degree of respiratory support he requires, the surgeons are confident that he would die intra-operatively or after a prolonged stay in the cardiac ICU. As a result, they will not do surgery.
It is a strange feeling to feel relief and simultaneously feel crushed. I am glad that the decision is taken out of our hands for many reasons. This was just the start for him – at 4 weeks, already in severe heart failure. Heart surgery to be followed by many other aggressive interventions – always the risk of death at a price we weren’t sure we wanted to pay.
We are taking him home on hospice either tomorrow or Thursday. My heart aches at what we will face, but I am so thankful that we are bringing him back home. I have been feeling deeply that he needs to be at home for the last 2 days. Based on his condition and the severity of his heart failure, I would guess that we have a few weeks to a month.
We will have to cram a lifetime of love and family into that time.