Since mid-August- however many weeks that is- my family and I have been on a rollercoaster. Dion’s health plummeted, then stabilized to a different place than before. He spent two weeks in a hospital setting that was and believe me when I say I am not exaggerating, terribly hard. An offer to a complex rehab program became available in what felt like the dark eleventh hour, a place that had not even been on our radar as an option but has proven to be the best thing for now. Just weeks ago, Dion, on top of everything, had to have surgery to remove a kidney stone, something that meant taking a few steps back in terms of his recovery. All along the way we have needed to push back on a broken system that is stretched too thin and often unable to meet the needs of the people within it. “Persist and resist” is the wise counsel I have received from a friend. And so that is what we do: persist with naming what we need for Dion to be safe and resist any options that are not.
How am I in all of this? That’s a challenging question to answer in a succinct way. I am sad. At times I am overwhelmed. I am determined to support and advocate and fight for what we need. Sometimes I feel okay. I am incessantly praying. Each day brings with it a mixture of laughter, gratitude, tears, fear, and hope. I think I have been wearing weariness like a second skin.
One of the [many] gifts I have received at The Dale throughout this time has been the holding of space for me: my emotions, my need for flexibility to get to meetings at the hospital, my busy-ness, my grief, and yes, my weariness. People stop me on the street to ask how Dion is doing and rarely, if ever, respond with overused clichés. Instead, they meet me in the pain and are strikingly matter of fact about how hard this must all be. The Dale staff team walk with me every step of the way.
I also am supported and strengthened by my family, friends, and neighbours. I am still whittling away at properly responding to their many notes of concern and care, all of which have made me feel less alone and very loved. I do not constantly talk about the importance of community as an academic exercise- it is something I have experienced first-hand. I have encountered many people who do not have anyone in their corner, and it is debilitatingly brutal. Without a community I don’t know how I/we would navigate all of this.
The journey is not over. We have many things to figure out. I feel challenged every day to be present to the moment, and to take it all a step at a time- an exercise in restraint for this self-professed internal worrier. Dion and I are actively choosing to trust that the God we believe in is with us, whatever happens. We persist and resist. Just today though the light broke through and we feel closer than ever to a solution. And so, we wait with hope and in expectation. I might just be able to shed that second skin of weariness someday soon.