When I look back on that year the pain is ever present but love and joy are what fill my heart the most. It was the hardest yet simplest time in my life. And although it felt like nothing made sense, everything did.
Most of us live with grief from the loss of someone or something. If you’re living with grief then you likely understand the immense pain it can bring. The pain is a commonality we all share. And although we understand each other’s pain, our journeys with grief are unique and we certainly can’t plan the day it will become part of our story.
For many years, my story was happy and easy until grief walked through my door. That day was July 6, 2021 and it is the day my beautiful daughter, Ayla Grace, was diagnosed with a brain tumor. Before this day, Ayla was a healthy, vibrant, silly and sassy almost-six year old girl but her symptoms came on suddenly. The doctors informed us that the type of tumor Ayla had was called a diffuse intrinsic pontine glioma (dipg for short) and it is rare, inoperable, and untreatable. The average survival rate is nine months post-diagnosis. There are no survivors of this type of cancer, and with that news, grief landed on me in a heavy, suffocating heap.
My daughter was my person. We were inseparable; we could often be found finishing each other’s sentences, laughing together at our inside jokes, making up songs, working on crafts, baking treats, reading books … everything I did, I did it with Ayla. She made me a better person because she made me a Mom, and being a Mom is the greatest and truest joy I’ve ever felt. As hard as parenting can be, there is no greater gift that God can give us, than our children. I am blessed that God has given me three.
After Ayla was diagnosed she went through months of intense medical intervention. A major brain biopsy, 45 rounds of radiation, trial chemo therapies, appointments, constant pokes and prodding. The journey felt tiresome and endless. My husband and I lived with the fear of not knowing what tomorrow would bring and the reality that one day we would lose our daughter. When the weight of our fear felt crushing we would remind ourselves that the most important thing we could focus on was the here and the now. Our mission was to fill Ayla with love and joy every single day. Ayla deserved nothing less than our best and so that is what we strived to give her as parents. We adopted practices into our daily lives, like prayer and meditation, to help keep our faith strong and our hearts on Jesus. We lived for each day with so much presence and love that you could feel it when you walked into our home. The distractions diminished and our only focus was on each other, everything else became an afterthought. There is beauty in simplicity. God gave us what we needed for each day.
But the journey we were on was gut-wrenching. We had to watch our child’s health decline rapidly. We watched her lose mobility and basic bodily functions all while she remained mentally sharp. I will forever be grateful that God blessed her with the ability to stay light-hearted, bright, and happy through the hardships. When I look back on that year the pain is ever present but love and joy is what fills my heart the most. It was the hardest yet simplest time in my life. And although it felt like nothing made sense, everything did.
Ayla fought courageously for almost a year. On June 29th, 2022 Ayla left this Earth and became our angel. There is a grace that grew over the moment almost instantaneously. God held Ayla in His loving arms and showed us that He would take care of her.
In the months after Ayla passed away a new kind of grief set in. This grief wasn’t easier, or less painful, but it was no longer filled with fear. We had lived through our greatest fear as parents and when Ayla passed away, her love filled up the hole that the fear of the unknowns of her diagnosis had dug. The loss of a child will never become easier. People say that time heals everything but sometimes I feel like it's the one thing time cannot heal. Yet through the daily tears, reminders and impossibly hard moments, time is helping me live with the loss. I’ve learned to invite grief in, as a friend. I let myself sit with the sad and take comfort in the love we have for each other and the incredible signs that Ayla shows me. Daily prayer has been my life preserver. God has been my strength and Ayla has been my inspiration for everything.
I know that something good is coming from this. I try to keep the daily reminder that our lives are fluid, not to be thought of as a series of events that happen to us, but a beautiful, intricate story woven perfectly for us. Some of us will have short stories and some of us will have long stories, but all of us have stories filled with unique purpose. Ayla’s story was short here on Earth, yet her spirit keeps imprinting more and more on my heart each day. Our stories do not end with death, they continue writing themselves within the people that we love.
Erin is an avid writer and the author of five children’s books. She is the co-founder of Little Legacy Library, a company focused on instilling success and achievement principals in children from a young age. Erin is also the Founder of The Ayla Foundation, a nonprofit dedicated to raising awareness of pediatric brain cancer, specifically DIPG. She currently resides in Westerville, Ohio with her husband, children, and white fluffy dog Jonah.