I found myself browsing reddit this Saturday morning to catch up on some of my favorite subreddits. In my news feed, there was a news article about the boy called “The Butterfly Child” named Jonathon Pitre. He and his family created a documentary a few years ago about his life-threatening condition called Epidermolysis Bullosaa rare genetic skin condition. It was a heart-wrenching documentary to watch but I remember seeing it when it originally came out.

Johnathon died about a week ago at the age of 17.

Most of my clients have a life-threatening illness that is either incurable or brings an intense risk of complications. I began to feel intense feelings of anticipatory grief, for a particular client, and for my other clients.

Working with children diagnosed as medically fragile and/or children with life-limiting illnesses can burn a hole in your heart. I knew that self-care was something that is absolutely required when working with this population. I didn’t realize that I had been neglecting the reality of many of my client’s situations so frequently.

Recently, on a Facebook post in Music Therapists Unite, someone had suggested getting a journal just for the death of clients. I loved this idea as a coping skill for myself because I enjoy writing (no way!) and also think the boundary a separate journal creates is very important. Luckily, I haven’t lost one of my clients yet at this particular job, so I have been putting off getting that journal.

However, after feeling that anticipatory grief, I went out immediately and bought myself that journal. I decided that for me, I wouldn’t just use it to write a letter or to journal about clients after they pass. I will also use it to process feelings of anticipatory grief as well and write to my clients now.

It felt amazing after that first entry. Unfortunately, anticipatory grief and death will be a large part of my job, and this blog as it is the reality we live in. I hope that I can provide more resources for coping and a companion to talk to if you need it as well.

Reach out anytime.


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