It is the day after Christmas as I write this. Colson has been gone for two weeks exactly. We had no idea when we took him to the hospital on the day that he died that it would be his last with us. Even mere hours before he died, when his daddy Jacob and I were switching shifts in the PICU, I had no inkling. I kissed his hand as I had done a million times before, touched his foot, told him I loved him and calmly, casually walked away. Six hours later, I was holding his body for the last time. The three of us, mother, father, deceased son sitting in a hospital room, transformed by the mysticism of death into a sacred cocoon.
I am at peace. Granted, I am incredibly wary of this peace. I examine it like a tea-kettle about to boil over, waiting for it to transform into a scalding pain. But the pain I have felt since Colson’s unexpected passing feels like a natural extension of the pain I felt during his brief life. It is a low, deep, constant hum in my cells, vibrating at a frequency that only other bereaved parents of children with life-limiting illnesses can hear.
My tears arrive suddenly, explosively, and achingly, just as they did when Colson was with us. They feel like the tears I cried during his first emergency hospitalization at two weeks old. The tears from his diagnosis of mitochondrial disease at four months old. The tears on the various days I learned heartbreaking truths as his disease relentlessly progressed. The truth that he was blind. That he would never walk or talk. That he could not eat independently. That he was getting too big for me to hold and carry safely by myself. The truth that, even before his first and only respiratory infection accelerated his death, I knew he was dying, and that the time for us to consider moving to comfort care only was drawing closer. Loss upon loss upon loss.
Parenting, loving, and losing a medically complex child requires a close kinship with grief. Jacob and I have been humbled as our incredible community holds us so close in these days after losing Colson. We have also been exasperated, because we can’t easily say the things that we want to without disrupting the social norms of grieving the death of a child. Things like “this is not the saddest we’ve ever been about him.” Or, “his death makes us feel a tremendous sense of release.” Or “the decision to let him go was clear as day to us, and made us feel so beautifully brave.” Even, “we are proud that his body told us it was done, and that we listened.” The closest I’ve gotten to summarizing these feelings is by telling our community that, because we felt so strongly that we would lose him young, even without an official prognosis, we spent every day of his life celebrating and memorializing him. Loving and grieving him. And this way of being, this lovely limbo, has not radically shifted for us in the face of his death.
We are in early days of grief, I know. But I also know that the inspired guidance and support we received from our palliative care team at Seattle Children’s Hospital, and through Courageous Parents Network, prepared us for the place we are now. And for the places we will find ourselves in our unknown future as bereaved parents. I hope, in my role as Blogger in Residence, to share with the CPN community what we learned and did for Colson during his four years through the miracle of palliative care. The essential ways of loving that made Colson’s life and death transformative in equal measure. Thank you for joining me as I find my way through what’s next by examining what has been.
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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. You can find Liz on Instagram @mrsliz.morris