Sometimes writing an update is hard. I know that many people have been wondering about what has happened since Dion’s hospital admission. In truth, I just haven’t had the oomph to try and figure out what to say. To hear Dion’s perspective, I encourage you to read a post he recently wrote here: https://www.dionoxford.com/finally-home-again-ms-homecoming-spring-feeling-old-lent-and-swearing-part-3-of-3/

For me, Dion’s nine days at St. Michael’s Hospital included many emotions, the hard work of advocacy, trips to the Eaton Centre food court for non-hospital food and working on getting the last bits of hardware for the renovation. It was tiring.

Dion was diagnosed with a Urinary Tract Infection (my mom’s nemesis) and Pneumonia (what led to her death). Needless to say, I felt triggered. At one point I was in the hall trying to find a quiet spot to make some phone calls, and all I could think was, “how am I here doing this again?” I was scared and weepy. I also felt mad.

I have been angry about Multiple Sclerosis and what it has taken from Dion, and by extension, me and Cate. I have been angry at the system that sent Dion back into a house still under renovation and without a fully formed care plan. I have been angry at the silencing of my concerns. I have been angry at God.

Lent is the period of forty days before Easter, a time of reflection and preparation before the celebration. It struck me the other day that every Lenten season for the last number of years has been particularly challenging. This year has been no exception. Some moments have been profoundly dark, not because I doubted God’s presence, but because it felt very far away.

Somehow every year, no matter how difficult Lent and life are, Easter comes. I have caught glimpses of it already: when I began to stomp my feet and raise my voice at the hospital, I felt heard; a more robust care plan is now in place; broad spectrum antibiotics helped quash Dion’s infections; and the bathroom in the basement is complete (the shower was used for the first time this morning). I also realize that wrestling with God would be impossible if the distance between us was too great. I am confident that God can handle hearing my questions and works to soften my anger.

This journey is not an easy one. I am aware that there are many safe and soft places for us as a family to land. Thank you to the wonderful community that surrounds us: to those who came to the hospital, let me show up on their doorstep, made or bought us food, left kind messages and texts (I’m still catching up), and offered prayer and/or good thoughts. To everyone at The Dale: thank you for consistently teaching me about perseverance and how to keep it real. You all remind me that Easter is coming.