It was a sunny day when I noticed Ella for the first time; long blonde hair with a bow in it, blissfully unaware of the struggles of the real world, as any 5 year old should be. I don’t quite remember the weather, 6 years later, when I ran into her and her dad in a local store. I do remember, however, where that long blonde hair once was, now sat a hat, covering her bald head. She had been newly diagnosed with leukemia at the age of eleven.
It was also a bright, sunny day the day I found out that Ella went to heaven, 9 years following our initial encounter. I remember feeling like the weather was mocking me. The brightness and birds chirping mocking my irreparable pain, the physical feeling of a broken heart. Now, writing this, I like to think the sun shined because Ella shined, the brightness extending her light from heaven back to us.
Ironically, months before Ella passed I commented during a conversation that I would never be able to live if something happened to Ella. But the feeling I had following losing Ella, despite the sickening ache that pushed me down daily, was the undeniable feeling that I needed to live on, because she wanted to live on.
An extravagant, flourishing nonprofit organization was not quite what I had in mind during this time of deep grief and question in my life. I developed several small, ongoing illnesses following Ella’s passing, a result of my inability to cope, and spent most of my days hiding in my one person beach house, or in therapy. This was, until, one day a worldwide pandemic began, and I was forced unexpectedly into living at home again. By now it was March 2020, and I was attempting to find my footing back in the world of pediatric cancer awareness. I had been an advocate since the age of 12, and my devotion was now stronger than ever to this cause.
It began with a plea from a nonprofit I had long admired (no longer in existence) called the Team Lilly Foundation. They were looking for handmade masks to donate to children battling cancer in hospitals around the country. In true “Ali” fashion, just as I had done 8 years prior, I broke out my sewing machine once again to make a difference in the lives of children battling cancer.
One mask turned into two, and two days turned into one hundred masks shipped off to the Team Lilly Foundation. When I made a post on Facebook, the messages of wanting to purchase masks came flooding in. What started as a hobby in my bedroom, soon turned into moving my sewing table in front of the TV in our living room so I could sew all day and all night, with an assembly line of my family typing elastics, hundreds of labels printing, and news and media outlets adopting “Miracle Masks,” 3 months and nearly 3,000 masks later.
The $10,000 in profits– all donated to Children’s Miracle Network Hospitals, Talia’s Legacy Children’s Cancer Foundation, and various other pediatric cancer organizations. My hands kept moving, and the orders kept coming. And with every order, my passion to do something “more” grew.
This was around the time Ella’s mom mentioned to me Ella’s dream, for every child battling cancer to receive a bald doll, after she had written a letter to American Girl requesting they make one. So Miracle Masks turned into real life miracles in the form of little girls receiving bald dolls, and with them, a new confidence and courage.
In June 2020, Glimmer of Hope Foundation was born. The pain of losing Ella has never gone away. I no longer hide in my room (though occasionally you might lose me behind stacks of dolls) but instead, put on a brave face to share Ella’s, and my own story, in hopes that it will inspire others to find purpose in their own pain. Hope and Heartbreak live very close together, in fact, they are neighbors. Don’t let the fear of your own pain stop you from finding the purpose in it.