Memoir Update: February 2026

Hi friends!

February is a short month and March always sneaks up on me, so I’m just barely getting this month’s update out in time.

The month isn’t over quite yet, though. Tomorrow (February 28th) is Rare Disease Day, a time of year that reminds me of the most meaningful talk I’ve given since my book was published. In 2024, I was invited to address a group of elementary school students at The Pennfield School in Portsmouth RI as part of their “Care for Rare” event:

It was an amazing experience. As I wrote afterwards:

A big theme of the book is how uniquely strong and smart kids are and hearing their brilliant questions only reminded me how true that is. Kids expect honesty about tough subjects and deserve it too. In many ways they handle it better than adults.

This year, I’ll be celebrating Rare Disease Week as an invited guest at Quinnpiac University’s “Rare Disease Book Club” next week. Like the 2024 event, this will be a somewhat unfamiliar experience. Not only will be I sharing our family’s story, but I’ll also be talking about the process of writing and publishing MORE THAN WE EXPECTED. I’m really looking forward to it.

We’ve been buried in snow for much of the winter, so I was very excited to travel to the Southwest to deliver Grand Rounds at Phoenix Children’s earlier this month.

There is a lot of amazing energy there. Pediatric specialists have trading cards they give to patients (as do therapy dogs!) and the head chef runs cooking classes that double as OT therapy sessions.

You can view a recording of my talk here. (Ignore the content warning; there’s nothing inappropriate. The organizers just set it to 18-and-over.)

Right after my talk, I had the honor of meeting Jean Gribbon, the inspiring founder of Beads of Courage -- a non-profit organization dedicated to improving the quality of life for children and teens coping with serious illness, their families, and the clinicians who care for them.

We first came across a similar project during our stay at The Children’s Hospital at Westmead and came to treasure the “heart beads” we collected there. They gave us strength in difficult times and remain some of our most cherished possessions.

This project is grounded in research and a holistic philosophy of care. Every pediatric hospital should offer it to patients and their families as part of their nursing and childlife practice.

March will be busy! At the end of the month, I’ll be heading to Chicago, where I’ll be delivering Grand Rounds at Lurie Children’s Hospital and speaking at the Society for Critical Care Medicine’s 2026 Congress.

I also have a big announcement that I’m planning on making next week. (Keep an eye out on my Facebook, Instagram or LinkedIn pages.)*

(*Special offer: if you take a minute to leave a review of MORE THAN WE EXPECTED on Amazon or Goodreads, I’ll be happy break the news to you early. Just drop me a line!)

Finally — although there are a lot of great things going on, making this my full-time focus hasn’t always been easy. Things can be lonely, frustrating, and uncertain. So as this short month comes to a close, I once again thank you all for your support and encouragement along the way. You are all the truest rewards of this crazy adventure.

Best, James