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Parenting The Chronically Ill: What is Normal
Normal is overrated, but necessary
I am most likely going to outlive my child.
That is a hard and very real concept. I was told that shortly after her 6th birthday. Her prognosis was always slightly grim in terms of permanent disability, but things changed. I was handed a DNR for my 6 year old.
I sat shocked for awhile. Then left the pallative medicine doctors office. She had been with the Pallative Med team since she was 2, and we never had an inkling it would come to that. So to say I was shell shocked is an understatement. It was a hard conversation, but necessary.
Over the 4th of July weekend she went in to anaphylaxsis twice in 24 hours, once going unresponsive. She came out of it, but it took some time for her to fully recover. When she was unresponsive in the back of the ambulance I was asked what I wanted them to do if she got worse. I was asked to make a snap decision.
So when I got back to her team, we sat and had the hard conversations. What would heroic measures do, would she survive them, would they cause a longer and more painful death, what did that look like in a kid with her medical history.
We discussed quality of life versus quantity of life. For a 6 year old. This is a discussion most adults never have with each other…
