“We made it to Target today. It was my goal to leave the house and pick up a few things, and we made it happen!” Thus begins (and ends) my personal journal entry for April 12, 2017. I laughed out loud when I read this recently. It’s a crystalline reminder of how monumental simple tasks are with a medically complex kid. And how extraordinarily difficult they become over time, as a child’s illness progresses.
Colson was almost six months old when I wrote this, and already very impacted by mitochondrial disease. My mothering was in its infancy. If I could tenderly, teasingly speak back in time to new-mom-me, I would say, “Just wait! It gets even more exciting. There will be days when brushing your teeth feels like finishing a marathon!” I would also tell myself to soak in Colson’s giggles and smiles because, less than a week after this journal entry, he was diagnosed with intractable seizures that stole those giggles and smiles. Despite the cascading difficulties presented by his disease, our family experienced expansive joy in the most mundane pleasures.
It mattered to me to mark that joy as often as I could. Even early on, my purpose in documenting our bliss was two-fold: to celebrate small victories with and for Colson while he was alive, and to record his magic to sustain myself when he died. In the weeks that have insidiously turned into months since his death, I have wrapped myself in these artifacts like a thunder vest. They provide reassurance and stabilize my heart in the face of complicated grief. I’m sharing some of my approaches to memory-making in the hopes that they are meaningful to other parents, or inspiring to providers who support those parents’ attempts to bask in the beauty of their children’s short lives.
Write letters: I wrote Colson a letter every three months of his life. It was a standing item on my calendar to simply pour out on the page all the things I wish he could know about himself, our lives, and my love for him. Sometimes I did this diligently on my laptop, and other times this happened haphazardly on my phone’s Notes app. Reading these letters now reminds me of how entwined Colson and I were, and allows me to see and celebrate the growth we experienced together.
Keep an activity jar: This is like a non-punitive version of a swear jar! We used an upcycled paint can, decorated by Colson’s Nonnie, as a receptacle for our activities. I kept a small notepad and pen near the can, and jotted down activities that felt fun in our daily lives. Things as simple as “Colson made paintings with his hands and feet,” or “Colson listened to the frogs in the ponds near mama’s childhood home” were noteworthy. For his birthday each year, I would write these individual activities on banners strung up around the house, as a way to acknowledge the vibrant non-medical experiences Colson had.
Build a library: We did this a couple ways. When Colson was young, I sent a super-simple questionnaire to our friends and family, asking them to share things like their favorite children’s books, favorite albums or songs, favorite poems, etc. I collected their responses as a “Colson Catalog” that I looked to for inspiration for our entertainment. Sharing these things with Colson was a way to incorporate our community into his life (and for me to learn more about our friends and family). Jacob and I would also buy Colson books at special times, like whenever we took a family trip, and every Christmas Eve. I have marked these books with “Colson Collection” inserts, along with some notes about when and where we got the books. I hope, one day, to share these with Colson’s cousins and their families, as a way to remember him together.
Perhaps it goes without saying that, in addition to these approaches, I have approximately twelve billion photos, voice memos, and videos of my sweet boy. As a documentarian of Colson’s brief life, I tried to maintain a balance between my urge to capture as many moments as I could, and my desire to just be. And just breathe. And just abide with him. The being, the breathing, and the abiding together were severed at his death. The magic of remembrance will be with me always.
Liz Morris loves exploring complex questions. Her professional experiences in project management, librarianship, and community development prepared her well for her favorite role as mom to Colson. Colson, impacted by mitochondrial disease since birth, inspired Liz to face the complicated aspects of his life through writing and advocacy. Liz serves as a family advisor at Seattle Children’s Hospital, and is a volunteer ambassador for the United Mitochondrial Disease Foundation. She is committed to helping families find the information they need to help them live well in the face of life-limiting illness.