The stories of medical families often mirror any given family, on any given day. Other times their stories look nothing like the average family. As a photographer, it is my goal to make documentary family photography accessible for all medical, special needs, and palliative families. It’s important that families facing challenges, particularly the caregivers, to see themselves in their story. The 21 Weeks photography project tells the beautiful story of one resilient family.
Melanie and Ella and they have become an integral part of my support network, since moving to the Bow Valley. As I have gotten to know them on a personal level, I have also had the opportunity to photograph their everyday life. In February, I went with them to their day long Rett Syndrome clinic appointment in Edmonton, Alberta.
It was a long day for Ella and her mom, but also an amazing opportunity to touch base with both the healthcare providers in Alberta who know the most about Rett Syndrome, as well as other families navigating this same diagnosis. This slideshow tells the story of Ella’s Rett Syndrome clinic day.
A few times a year, this clinic is run at the Glenrose Rehabilitation Hospital. This particular clinic is dedicated to families with Rett Syndrome. The clinic involves a developmental pediatrician, physiatrist, occupational therapy, physiotherapy and a variety of medical students. Any medical parents out there know how unusual it is for this many specialists to be involved at one time!
Halfway through the day there was a break for families to regroup and connect with each other. The Rett Syndrome Society of Alberta provided lunch for both the families and the staff. Some families were meeting for the first time, while others have know each other for years.
In my last blog post, Brain and Body Breaks, I was talking about how our family is managing big emotions. But Maverick is not the only person in our family who is struggling with a lot of big feelings lately. In the face of all the transitions in my family’s life this year, the uncertainty in the future of education and healthcare in Alberta, and now the worldwide COVID-19 pandemic I have been struggling with whether what I am doing with my photography is the best way to support my family. I mentioned this to Melanie and here’s how she responded…
Hey you! You! I was thinking about what you said when you met up with the other photographers this week. And you are wrong. You deserve to be there.
You have so much talent. You taught yourself these amazing and unique skills that are changing peoples lives, feelings, emotions and more. All photography has beauty, but it doesn’t ALL DO THAT.
You are storytelling images and stories many find too painful to share, and not many photographers could figure out how to navigate. So pat yourself on the back and keep moving forward on this squiggly journey.
My story, Ella’s story, has become much more powerful because of you. I am receiving so many positive and amazing comments because of that, because of you. You are doing a new kind of teaching. 😘
Thank you Melanie. You are an inspiration to me and so many other families. Thank you for sharing your family’s story with me and supporting me in my own story.
Thank you to the staff at the Rett Syndrome clinic, as well as Chronically Simple for gifting this session. If you would like to learn more about this project or Melanie and Ella’s story please check out more 21 Weeks posts.
If you are a photographer or a family who is drawn to documenting and normalizing life for families requiring medical care please join our Facebook group, You’re Here for a Reason.