Loving Brandon was hard. Not because of Brandon – he was a beautiful boy. He had beautiful eyes and a gentle heart. He loved massages and his face lit up during sensory therapy. He also had severe brain damage and limited ability to communicate. We could never know for sure how much he did or didn’t understand, but we feel certain he knew his people and he understood love.
Loving was not hard because of Brandon. It was hard because it hurt so badly to watch him suffer. On top of his severe cognitive challenges, Brandon had a contagious respiratory infection. That meant there were lots of rules around how and where he could be cared for. The rules came from a good intentions – intentions to help cure and to protect others from infection. But for a child who already has a life limiting condition, those rules were pretty hard to understand.
Brandon only had a small circle of people who really knew him. He couldn’t speak up like a typical kid and tell someone when he was hurting, sad or sick. It broke our hearts when he moved to a specialty respiratory diseases facility, even though it made sense medically. We knew that no treatment on earth could offer him a long life, so we wished for his remaining time to be peaceful. We wanted him to have security, comfort and a predicable routine – things we knew were important to him. But treatment for his respiratory condition plunged him into a new routine, a new system, and left him surrounded by strangers. Kind strangers for sure – but they didn’t know Brandon.
There are no easy answers in palliative care. Brandon’s story will always break our hearts. We are thankful we were able to visit with him in his isolation unit, but incredibly sad he was not at home when he died. These situations push us to keep talking, keep asking ourselves the hard questions – what happens when palliative care intersects with other specialty areas? Sometimes different branches of health care act in synergy – mental health, physiotherapy and many other specialties are vital components of end-of-life care. But sometimes it’s not so simple. The right thing in one book is not the right thing in another. We are so grateful that these discussions are part of medical practice these days. Our hard conversations belong to a wider debate. Scientists and doctors around the world are studying and talking about these issues.
For us, right now, we are feeling sad that Brandon has died without returning home. We wonder if we failed him somehow, if we could have changed things. It’s a pretty normal part of grief to ask these questions, but its also part of understanding and processing this painful sorrow. By seeking to understand, we are seeking to find a way forward, to figure out what our hearts say about some of those hard questions. Sure, there’s a whole lot of research going on – but sometimes what your heart tells you makes a lot of sense.
For us, right now, our hearts are feeling incredibly sad.
The article above is republished with permission from Butterfly Children’s Hospice. Read other articles at their blog here.