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Guest Blog: Rett Syndrome Awareness

In honour of Rett Syndrome Awareness Month, my good friend and fellow medical mom, Melanie Birch has written a guest blog.

Last spring, our family spent four weeks helping teach our daughter, Ella,  how to ski. Her instructors were from an incredible organization called Rocky Mountain Adaptive. To be clear, they did the teaching. Our job was to cheer Ella on. Her progress was nothing short of phenomenal. 

Behind the scenes, it was our job, as her family, to make sure Ella was comfortable taking the gondola to the hill, that she could find ways to communicate her needs and desires and that she would wear ski boots in the snow. Ella has Rett Syndrome.

A mother communicates with her daughter using an assistive device while riding in a gondola.
Melanie communicates with Ella using her AAC device.

During those four weeks we had some setbacks, but mostly we had major successes. I knew I wanted to share both the story and feeling of that journey. 

Finding My Story

When Kristy approached me about creating a digital story with her I felt excited AND scared. I had gotten really comfortable sharing my journey as a mom to a girl with a rare disease on my Instagram account, @rockymtn_rettmama. I regularly share images I have taken or that Kristy has captured, and the words about Ella and I usually flowed onto the page. But this would be a dedicated time to create a story, time spent really examining my words and evaluating what images would help tell our story. I knew I would create a digital story relating to our life living with a rare disease. I wondered how it would resonate with others and feel to create it.

A mother describes some of the challenges her daughter has due to her diagnosis of Rett Syndrome while out for a walk in Canmore, Alberta.
Melanie describes some of the challenges her daughter, Ella, has due to her diagnosis of Rett Syndrome while out for a walk in Canmore, Alberta.

Why Tell My Story

I spent time thinking about why I wanted to tell my story.

Why was this important to me?
Could it help others brave a similar journey? 
Would it give friends and strangers alike an understanding of our days? 
Would it help her medical team and therapists see Ella for what she can do?

Kristy helped me figure out why Skiing Uphill was a great story to share.

Melanie shares a powerful digital story of hope based on her seven year old daughter’s adaptive ski lessons.

The Product

My video is less than three minutes and in that time I tried to explore a range of feelings, because that’s what it is like when your child has Rett Syndrome. I touched on hope, reaching your potential, digging deeper when times are tough and what it can be like to assist someone who communicates with alternative communication. My goal was to create a final product I could share with others that would make them smile. If I did it well enough, maybe even make them feel hopeful and like big dreams are possible. I didn’t realize it would make so many people cry as well, so I suppose that was a bonus?! I credit Kristy in helping me bring out those emotions.

A girl skis with support from Rocky Mountain Adaptive staff.
Ella skis with support from Rocky Mountain Adaptive team members.

 The Process

Through the storytelling journey I revisited feelings of what it felt like to receive Ella’s diagnosis and how helpful our therapy team has been. For me it wasn’t just about the end product, it was about the creation as well. For all the ups and downs of having a daughter who lives with Rett Syndrome, I feel hopeful about her future and all of the successes she has had. 

It’s been 5 months since I did my first digital story with Kristy and I think I am still processing the amazing experience. Recently, a friend told me Skiing Uphill made her “believe anyone can do anything, as long as they keep trying!”

Thank you Kristy for helping me tell a story that made others feel that way. What a special gift digital storytelling is!

Melanie’s story resonates with me for so many reasons. Obviously, I love photography and digital storytelling, but more than that Melanie and I have been able to connect about our experiences. They are not the same, and yet they are. I am so proud of this mama and all the advocacy and education she does around her daughter’s rare disease.

Please show Melanie some love by leaving a comment here, on her Skiing Uphill digital story or over on her instagram account, @rockymtn_rettmama

If you would like to learn more about Rett Syndrome, get involved or make a donation please visit the Ontario Rett Syndrome Association’s website. To learn more about Rocky Mountain Adaptive and the amazing array of adaptive sports they offer click here.

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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