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I Was There Too: Melanie Birch

I Was There Too is a series of conversations I am having with other medical moms and photographers who are telling stories of life for families with medical complexities.

Meet Melanie Birch and her daughter, Ella.

A mother watches her daughter during a medical play session.
Melanie talks Ella through the process of an EEG during a medical play session.

I originally met Melanie through a Facebook group for medical parents in the Bow Valley even before we officially moved to Canmore. We immediately bonded over our love of photography and our shared experience as the primary caregiver and advocate for our medically complex kids. As you know if you’re a medical parent, relationships with people sharing similar experiences are incredibly important to feel supported.

Melanie is one of the strongest advocates I have met. She tirelessly works with medical staff, educators and therapists to get the best supports possible in place for Ella, who is diagnosed with Rett Syndrome.

Prior to an EEG a family uses a doll to teach what the procedure will look like.

Here’s what Melanie wrote on her Instagram account, @rockymtn_rettmama, when I asked if she would be the subject of my 21 Weeks photography project, “Well friends, I got lucky! All us medical mamas can use a little extra luck if you ask me! A friend of mine, Kristy, is an amazing photographer and will be using Ella and I (with some appearances from the men, and some other awesome people in our lives) in her photo project. Since I’m often behind the camera or busy helping Ella, and since #IWasThereToo, I’m extra excited for these photos and this great opportunity for sharing our story.”

A mother comforts her young daughter during an x-ray.
Ella’s final assessment during a full day of appointments with the Rett Clinic at the Glenrose Rehabilitation Hospital. Melanie stays in the room to comfort Ella while the technician captures the image.

If you haven’t seen any of our 21 Weeks project you can head back and check out some of the blog posts after you watch our conversation below. The project focuses on the relationship between Melanie and Ella. The goal was to highlight the strength, resilience and hope that caregivers demonstrate when advocating for their child in the medical and  education systems. And it has been going on for much longer than 21 weeks!

Watch the conversation to learn more about Melanie and Ella, and how documenting their story has impacted them. Or just skip ahead to 12:47 when Ella pops in to say hi.

Below are a few of the sound bites that really stood out for me when I went back to listen to our conversation. I’ve split it up into what stood out for Melanie as the caregiver, as well as what stood out for her in relation to what Ella sees.

Melanie – Because I Was There, Too

A mother and daughter sit in the waiting room of a hospital.
Taking a moment at the end of a long day.

9:22 “I’ve always loved photography and I take lots of pictures of my kids. But I’m not usually in the pictures.”

14:44 “I don’t think I knew I needed the pictures as much as I did until I started to see them. And then I was like these are great and I want more of these.”

18:49 “I’ve really started to understand now why it’s important to share a medical journey or whatever it is you are going through, because our friends and family are able to understand better.”

28:06 “I’m an integral part. I know that but seeing myself in the pictures makes me realize how much Ella needs me.”

28:45 “I have been using some of the pictures with my writing. More people have approached me to tell me what they have appreciated about it. It made them think about things they hadn’t thought about.”

Ella – Because Images Communicate Ideas

A mother communicates with her daughter using TouchChat on her AAC device.
Melanie uses Ella’s “talker” to communicate with her about what to expect at their medical appointment.

11:10 “Ella and I can look back at some of the pictures that you’ve taken. She sees herself getting her x-ray or walking down the hall somewhere in the hospital. I can use those pictures as part of our therapy when I’m making social stories for her on her speech device.”

12:10 “One of the social stories I made used pictures from Child Life and some of the pictures you had taken. Ella could see “Oh I’ve done this before. I’ve had these wires on my head and that felt okay with me. I feel like I can do it again.” When I went to her appointment the tech and the child life specialist who came to help us wanted the social story as well.”

30:18 “A lot of my friends have talked to their kids about the appointments we’ve had. And they will ask more questions. I think it helps them understand Ella a little better.”

Birthday parade during COVID
Friends and family participate in a COVID era birthday parade to help celebrate Ella’s 6th birthday.

Follow Melanie on Instagram to keep up with what’s happening in their life or read through some of the 21 Weeks blog posts.

Interested in sharing your own story through photography?

I also offer a complimentary series of emails and an accompanying planning page for people interested in learning to use photography to tell their own story.

Published by Kristy Wolfe Stories

Kristy is an engaging, open, and honest Common Language DST trained digital storytelling facilitator. She has been speaking and teaching workshops on both photography & digital storytelling for 5 years. With a background in the education, healthcare, and non-profit sectors, she works with diverse audiences, prioritizing ethics in storytelling and storyteller wellbeing.

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