My Listen To Your Mother Experience

My Listen to Your Mother Experience

This post originally appeared on The Mighty

I never had an interest in public speaking, in fact I avoided it as much as humanly possible. It always made me think of those times in high school when I had to present a project to the class. My heart beat so fast I could barely breathe and my voice trembled as I tried to rush through the presentation as fast as possible. So it’s no surprise that I never followed any paths that lead towards public speaking in my post-secondary school years. Until my life took a new direction.

Since my daughter’s diagnosis almost 3 years ago, my goals and the way I live my life have dramatically changed. Cystinosis is such a rare disease that most people only hear of it because they know someone affected.

I aim to change that. Though there are only an estimated 2,000 people worldwide living with cystinosis it shouldn’t limit the amount of people we can educate. All we need are people willing to listen.

I began writing about our journey with cystinosis on my personal blog and got the bug for writing about it on other sites after The Mighty published a letter I wrote to cystinosis. I realized that this could be the way I get cystinosis out there and began submitting to parenting sites. I was thrilled to be able to share my stories and spread some awareness to an audience who would have never found their way to my blog on their own.

One day I saw a casting call for the first Listen to Your Mother Vancouver show. A show that invited people to read their stories related to motherhood on stage – in front of a live audience. I knew it would be an incredible opportunity to advocate for my daughter and cystinosis but I immediately dismissed it as something I simply would never be able to do.

But it stayed there in my mind, tugging at my fear of public speaking and daring me to do it anyway. If there’s one thing I’ve learned from my daughter’s diagnosis it’s that this life is fleeting. It’s too short to worry about silly things like what others might think of me. And it’s definitely too short to let my fear stop me from doing what I want, and certainly from doing things I hope will make a difference.

Choking back my fear and the rising urge to hide trembling under my bed covers, I booked myself into an audition spot and began rehearsing like crazy! I’d just written an essay I thought would be perfect. It talked generally about my motherhood journey and my dislike of the phrase, “as long as it’s healthy.” In my opinion it was universal while still a personal testament to my experience.

A couple months later I was surprised to learn that the producers felt the same way! Somehow I managed to make it through my audition without my voice breaking, though I was pretty sure my heart was only seconds away from pushing right out of my chest, and I was now officially a cast member.

On April 30th, 2016 I got on that stage, in front of almost 300 people, with 12 other incredible women, and bared my soul. I told others how much my daughter meant to me and how her disease didn’t make her less than any “healthy” child. I fought back tears when I explained how much joy she brought us and how grateful I was to have her in my life. And I made it through, despite my lifelong fear of public speaking.

At the end of the show I was in the crowd speaking with my friends and family who had come to support me when a woman I’d never met before introduced herself. She started with, “hello,” and then immediately broke into tears. She began telling me about her daughter who had cystic fibrosis and that she completely understood how I felt. She thanked me for sharing my story and I was so at a loss for words that I gave her a hug and thanked her right back.

This show has been one of the most powerful experiences of my life. It started with my desire to raise awareness but ended in me growing as a person, conquering my fear, and connecting with a stranger on a deeply profound level.

And I have my daughter, and ultimately cystinosis, to thank for it. Without them I would have never even started writing and most certainly would not have gotten up on that stage. As difficult as cystinosis can be sometimes, it is now an integral part of our lives and I can’t help but be grateful for some of the lessons it has taught me.

You can read my full “As Long As It’s Healthy.” essay on Coffee + Crumbs.

Listen To Your Mother Vancouver 2016 Cast*Pictures taken by Eran Jayne Photography

 

Listen To Your Mother

I am so super excited to announce that I will be reading a special essay on my somewhat unique perspective of motherhood at the very first Canadian production of Listen To Your Mother!LTYM Image 1

The inaugural Listen To Your Mother Vancouver show will be taking place on Saturday April 30th at 7:30pm at St James Community Square in Kitsilano and I can’t wait.

Listen To Your Mother (LTYM) is a one night event that gives motherhood a microphone. On their website they state their mission is to “take the audience on a well-crafted journey that celebrates and validates mothering through giving voice to motherhood–in all of its complexity, diversity, and humor.” It was started in 2010 by Ann Imig in Madision, Wisconsin and over the years has grown into an event taking place in over 40 cities across the US and now Canada! You can check out readings from every past show on their YouTube page.

I had the honour of hearing my fellow cast mates essays a couple weekends ago and I was completely blown away by the amazing talent as well as their hilarious, beautiful and touching words. I was surprised at how instantly I connected to all the pieces in some way and I hope that they found mine just as relateable. Some of the amazing cast include Rant and Roll, Spill It Mom, Andrea Paterson, Eran Sudds of Good Mother Project, Laughter Zone 101 and missteenussr.com.

It’s going to be a really amazing night and I’m excited (and also terrified) to get out of my comfort zone and do something I never, ever thought I would do. So if you’re in Vancouver and want to come show your support, tickets are only $20 and can be purchased here. I Hope to see some friendly faces there!

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