My son's story. Co-authored with leading pediatric palliative care experts.

Published in Intima: A Journal of Narrative Medicine

Liz Morris is a guest blogger on the Courageous Parents Network and a fellow Seattle rare mom who lost her son Colson to mitochondrial disease in 2020. EPISODE HIGHLIGHTS In your most recent blog, you spoke about obligation and purpose. How has your oblig

Co-authored on behalf of the AAP Section on Hospice and Palliative Medicine.

Liz and Jacob Morris, friends of Shannon and Tyler’s, recently visited Angama and the Mara. As it's easy to forget, Liz reminds us what it feels like to experience it all for the first time. You reach the gate to the Mara Triangle with the anticipation of a novice rollercoaster rider. The approach itself has been eventful, winding through the wooded edge of the Oloololo Escarpment while grazing zebras and impalas glance mildly at your passing.

Introducing one of CPN’s 2021 Bloggers in Residence: Liz Morris, Mother of Colson. I first ‘met’ Liz over three years ago when she submitted a blog post to CPN on the occasion of her son Colson turning one. Reading her piece, I wrote back to her, “Your attitude is clearly one of strength and determination and gratitude and deep love, and those are all the ingredients for being an amazing mom to your son.”.

“Tell me what you understand about your son’s condition.” With this straightforward request, my son’s kidney doctor let my knowledge lead the way during one of our first appointments together. My son was just over a year old at the time. His renal ultrasound and lab work had indicated signs of decreased kidney function, which we understood to be one of (many) emergent, secondary symptoms related to his mitochondrial disease.

When my son was just over one month old, my husband and I went on a date. It was a rainy November day in 2016, and we were determined to leave the house together to do something, anything, not related to baby duty. Of course, as a new mom whose infant son had just spent a harrowing week at the local children’s hospital and been diagnosed with mitochondrial disease, it was hard to tear myself away.

I can’t stop thinking about cake. Or, rather, alternatives to cake. My sweet son will turn one this month, and we are preparing for his first birthday celebration. We are thrilled to reach this milestone, though I have no idea what to feed him as we sing him ‘Happy Birthday,’ as he does not yet eat solids.

Last month, we invited readers to share their responses to a writing prompt inspired by Beth Winegarner’s essay Birth Meridian. We asked readers to tell us about a book that prepared them in unexpected ways for birth or parenting. Below is Elizabeth Read Morris’s response. The first coherent thought I had after my son was born was that I could not imagine a universe without him.

Disoriented doesn’t even begin to describe it. You’re on another planet. The terrestrial norms that have kept you grounded for 32 years are meaningless, annihilated by forces beyond your control. Your characteristic practicality and diligence are no match for the septic, strange world in which you now find yourself — a world in which children are born with life-limiting illnesses, and their new parents must cope with grit they don’t yet know they have.

Parenting a child with a rare disease is an exercise in constant calibration. All of your energy goes to maintaining an almost-impossible equilibrium: keeping your child as comfortable or medically stable as possible, while making as much progress as they can, while finding some semblance of normalcy in your day-to-day.

Our family just returned from an incredible trip to the Grand Canyon. I have always wanted to visit this natural wonder, so I was thrilled when my in-laws offered us a free stay at their time-share property in Sedona. My husband and I marveled at the sunsets and moonrises among the red rocks, and explored the South Rim of the Grand Canyon in awe, all with our 13-month-old son in tow.

A progressive, terminal disease is a natural disaster. Whether it strikes with the unexpected swiftness of an earthquake or gradually subsumes everything in its wake like a hurricane – destruction remains the inevitable outcome. Providers and patients swi

A presentation/workshop I co-facilitated at Mitochondrial Medicine Symposium 2022.