“Our world as we knew it ended 45 days ago with our daughter’s diagnosis. And now, with this pandemic, that’s happened to everyone else. Everyone’s world as they knew it has ended.”
This is what the mother of a baby girl diagnosed with aggressive cancer said to me a few days ago. They have been living in the hospital since the diagnosis, isolated from most everyone else, but aware, of course, that the world outside is in a state of suspended animation; which is pretty much how they feel too. Just as the rest of the world does not know how or when the pandemic is going to end and what the world will look like afterwards, neither does this couple know what their future holds.
Another rare disease mother shared with me that her daughter, whose younger brother had died several years ago, told her, “I remember this feeling. I don’t like this feeling.”
Parents, caregivers, siblings and providers of medically complex children are deeply experienced at having to cope in the face of the unknown; and that experience is exacerbated and put to the extreme at this moment in time.
There is little of this that we can truly fix. But we can build our strengths.
Journaling is one way to do this. Taking the thoughts that are swirling in our brains and throwing them onto the page is a therapeutic activity offering the possibility to help manage our anxiety and eventually heal our pain. It is a small but accessible act that moves us from suspension to action.
In her interview with CPN, counselor Mary-Frances Garber recommends journaling. And in CPN’s new short series Writing as Healing, mother and writer Faith Wilcox shares how her process of writing through her daughter’s illness and into bereavement changed the way she remembers and how she holds the story.
As someone who did not journal during my daughter’s life, I tell you that this is one of my few regrets.
CPN invites you to watch, consider, and hopefully be inspired to try writing what is in your mind onto the page, in fragments or complete sentences … for no one else but yourself.
(There will be three videos in the Writing as Healing series. Below is #1: An Introduction and the Three Phases.)