Tonight, I find myself thinking about the word, home. About what it means. About where it can be and who needs to be there. I’ve thought about writing this blog so many times, I actually started writing this in February, but late on a Saturday night the perfect storm of inspiration hit.
Quite a few things led up to this serendipitous feeling of wanting to talk about home…a conversation earlier this week with my RAW Collective crew about our numerous identities, the sense of community that came out of my first in person digital story screening event, my husband being out of town, and then my friend Ali wrote this Facebook post…
home sweet home
Multiple besties and a helper greeted us as we arrived home last night, and the mail was like Christmas!! Look at all this love!!! Caregivers conference swag bag, volunteer appreciation from The PFCC team and love from Kristy Wolfe!– Alison
So happy to be home! Let the cleaning begin!
Ali has taught me so much about what home means. She is incredible and I knew it was time to share what I have been thinking about for months now.
The first time I met Ali was at the Children’s Healthcare Canada conference in December of 2019. Ali stood up and asked the “Getting Kids Back on the Radar” panel a question. Ali is an advocate for her son, Jake. She advocates for him in both healthcare and education. And by extension she advocates for all patients, for all caregivers, and for all families.
Earlier this year I participated in the Quietly Loud Workshop with Kristine Nyborg and Felicia Chang. During one of the lessons, Kristine said “access into a story often starts with yourself” and in my case she is 100% correct.
The following are a few excerpts that I wrote in a blog following the conference…
“I went into this conference wearing a number of hats, but as you probably guessed I made sure my voice was heard in regards to families seeing themselves in photographs. On Monday, morning there was a panel set up to discuss topics related to “Getting Kids Back on the Radar” with regards to policy within health research. There was a lot of talk about the importance of “lived experience” and family stories, which I absolutely agree with, but what I had trouble with was the fact that the imagery being used was not truly representative of hospital families. A colleague reminded me I needed to wait to talk until they opened up the mike to questions! And I said it.”
“Families need to see themselves in the images being used to tell stories.“
“I recognize that this is not important to everyone. And I know that there are many families who do not want photographs of their hospital experience, but there are just as many families who do. This is our real life. Hospital life and medical appointments and being a caregiver is a part of our story and our identity. This part of our life doesn’t turn off when the work day is done. It doesn’t turn off when our long awaited appointment with a sub-specialty is over. In many cases, parents (and patients as they transition out of pediatric services) are the ones coordinating care.”
“What I saw at this conference was a sample of just how many healthcare practitioners are working to streamline services, support families and stand with caregivers to make their voices heard. I was lucky enough to meet volunteers, families, frontline healthcare staff, hospital administrators and not-for-profit leaders. To say I was with my people would be an understatement. I met people from organizations who weren’t even in my wheelhouse and I connected with families who have been speaking their truth for years.”
Pay It Forward Session
Following that conference and thanks to a Pay It Forward session gifted by Chronically Simple, I photographed Ali and her son Jake at the Rotary Flames House in Calgary. They were there for respite care. You can see those original images in the slideshow below. This is life for a family during respite.
Kristine also reminded the Quietly Loud participants, “It could just be the simple telling of everyday stories to highlight the incredible value of the everyday” and I believe this is what Ali was looking for.
Bringing it Home
But Ali knew that she needed images of her and Jake in their home in Grande Prairie. And two years later, after a medical scare, it was time. I flew to Grande Prairie and spent 24 hours with Ali and Jake.
I was honoured to be asked to document their story in their space, with their people, and their pups.
Jake & Ali just got home from Rotary Flames House.
Ali, thank you for teaching me what home can mean, who home involves and just why it is so important for caregivers to be able to provide care for their loved ones in the places they choose, surrounded by the people they choose.
You are an inspiration to me and to so many other medical moms. I am so grateful I know you and Jake. Welcome home ♥️