Telling Our Family’s Story

Quite a journey

It’s hard to find the words to explain the journey of writing “The Ups and Downs of Audrey May.” Much like my daughter Ava’s diagnosis, it’s been a lesson in bravery and vulnerability. Ava (Audrey in the book) is our firstborn. My husband works in film and television as an audio supervisor and from the beginning, we decided that if our marriage and family were going to survive this crazy industry, it would take intention. So I quit my job, and we made a rule that our family would never separate for more than two weeks. Ava and her two sisters, Vivi and Violet, have been raised on production sets all over the world. This has not been a cheap or easy decision, but we have never regretted it.

Ava was 5 years old and starting kindergarten when we were preparing for a three-month movie shoot in Romania. My husband and I were celebrating our 10-year anniversary in Mexico and had left the girls for the first time ever for four entire days. When we returned, my mom immediately told me that she was very worried about Ava, who was tired, feeling sick, always thirsty and for the first time since she was potty trained, having accidents! Straight away I called our wonderful pediatrician, Dr. Christine Curtis. She is seriously the best. She had always told me to trust my mom-intuition, and this was no exception. She had us come right in, checked her, and within minutes we were on our way to Children’s Hospital Los Angeles. As all type 1 diabetic (T1D) families know so well, the rest was a blur as we dove (were pushed?) head first into this new life.

Ava is now 18. So much has happened between then and now. There have definitely been many ups and downs. At 9, she was on Project Runway as one of the models. Jesse, her designer, created a hidden pocket for her insulin pump—so cool! But she was also bullied in middle school and high school for her diabetes. We homeschooled her senior year, which proved to be the biggest gift as she had time to pursue her passion for musical theater—playing the roles of Eponine in Les Mis, Belle in Beauty and the Beast and Nina Rosario from In The Heights all in one year. She just recently booked a lead in her first professional show. She’s beautiful, brave and incredibly talented, but I think I am proudest of her kindness and compassion. She could have let her heart become hardened, but she never did. She and her sister Vivi (Lizzie in the book) are still the best of friends, and fill every room they enter with laughter and joy (although Vivi wants you all to know that the sound of a squishing diaper no longer accompanies her when she walks!).

The process

The actual writing of the book was probably the hardest part. I first started writing “The Ups and Downs of Audrey May” when Ava was about 10. Having to go back and relive those initial terrifying days, Ava sat with me and tried to remember exactly how it all felt. We both cried and laughed, and cried some more, because that’s honestly what we did back when it all happened: survival mode. It was hard, but so worth it. There are several reasons I wanted to share our story, in a fictionalized form. The first being that the only books about diabetes we could find were for much smaller children. I wanted our type 1 kids to see themselves as the hero of a story. The second reason was to support newly-diagnosed families. Not just for them, but for all the people who love them and want to get a true understanding of what it is like to be diagnosed and to live day to day with this disease. The third was to create a resource for schools and libraries. I’ve already had teachers pledge to read it at the beginning of every year whether there is a type 1 child in their class or not, which to me is amazing, even if the only outcome is that everyone involved realizes: YES, they can have the cupcake!

Independent publishing is a bit of an uphill battle, but we have been blown away by the response. We’ve heard from moms who slipped the book into their child’s summer reading, and then saw their eyes light up when they realized THEY were just like the main character. And moms who saw themselves in the story. People who don’t have type 1 truly understanding what their loved ones are going through is so important. The comments and messages have been endless, but I still cry over every one. It felt so vulnerable to share our story and I worried that people would say, “It wasn’t like that for us at all!” I almost didn’t publish it, but I’m so glad I did.

I’m currently working on the second book in the series, but I’m also working on a tween novel. It’s such an awkward, self-conscious age, and type 1 just ratchets that up more than a few notches. I’d love to hear what others think about our book. I’m so grateful for the Beyond Type 1 community—it’s been a game-changer for our family, with so many incredible resources and really, just knowing we are not alone on this journey is the biggest blessing.