Friends, it’s been a really tough week.
Last Saturday, as I was putting the finishing touches on my Braille kindness rocks, I received the phone call no one ever wants to receive.
It was my friend, Amy, who teaches students with special needs at our local middle school. She’s also the teacher of my sweet backyard neighbor, Ashton, who was in her care for the past five years. Even before I answered her call, I already knew it was bad news. Tears welled up in my eyes before I could even say hello.
“It’s Ashton. She’s gone.”
The sob that erupted from my soul was loud and ugly, as my body shook in complete and utter anguish. Even now as I’m typing these words, the tears are back again, reminders that my heart is still raw and aching over the loss of this sweet girl.
16 years old.
No. No. No.
I spent the rest of the weekend in a daze, the sorrow enveloping me like a cloud of darkness, no light shining through. Painting provided a brief solace, so I picked up my paintbrush and sat at the table, staring at the supplies that were never put away after Saturday morning’s devastating news.
Ashton loved the color pink. In fact, she had her own fundraiser and Facebook Page dedicated to her favorite color: It Comes in Pink. I counted the extra rocks I had in my container and was shocked at the total.
That was my sign. I needed to paint Kindness rocks for Ashton. I pondered for a bit about what to create, what message to send out to the world, then it came to me.
Ashton’s sixteen years were filled with hope and promise of embracing the joys in each and every day. When her parents, Chris and Laurie, received the diagnosis of Ashton’s condition at nine months of age, they were told she probably wouldn’t live long enough to attend elementary school. Niemann-Pick Type C (NPC) disease is extremely rare with only 500 diagnosed cases in the world and no known cure.
And their precious firstborn had it.
In their heartbreak, they made the decision to live life with Ashton to its fullest. Nothing was taken for granted. They watched their precious daughter’s body slowly succumb to the limitations of this disease, and yet they still celebrated life with exuberance.
They went on vacations. Played in the snow. Rode in boats on the river and sat along the shore.
They built a playground in the backyard then added a handicap-accessible swing. They built a ramp off the side of their deck when steps became too much to manage. They replaced carpet with wood flooring and added handles to hold in their bathroom.
When Ashton started to wobble when she walked, she received leg braces, which of course came in pink. When she needed more stability, she received a walker until walking was too much of a challenge. When the time came to transition to a wheelchair, she had to have the one in pink.
Her heart radiated love to everyone she met. She had an incredible sense of humor and often got the giggles at the most inappropriate things. She was a treasure to anyone who ever had the pleasure of being in her presence.
To us, she was simply Ashton. We’ve spent the past twelve years sharing a backyard and I’ve been blessed to see this sweet girl grow up. Her younger sister, Emily, doted on her, their bond of sisterhood stronger than many siblings I know.
Despite the challenges that constantly came her way, Ashton’s determination and perseverance were unmistakable. She showed us all the true meaning of hope and unconditional love.
For Ashton’s rocks, I chose yellow as the background to represent her bright smile and the joy that radiated from the twinkling in her eyes. I painted one pink heart on each rock with the word “Hope” in white, then added a little bit of glitter inside the heart, because Ashton was always a sparkle to anyone’s day. On the back I added “For Ashton” with the date that she became healed and whole.
Sixteen kindness rocks.
Sixteen hearts of hope.
On Monday morning, as I was putting on my makeup, I couldn’t believe what I saw on my brush: one perfectly formed heart staring back at me.
I had to smile at the little Godwink I received, as my heart was still so heavy from Ashton’s passing. It was as if Ashton was sending me a hug straight from heaven.
On Wednesday afternoon following the graveside service, Laurie shared a story with me about how she had gone for a quick run to clear her mind and her digital watch beeped, displaying one lone heart.
Just one simple heart.
Today we shared in a Celebration of Life service and were reminded again and again of Ashton’s impact on this world in her short sixteen years. Ashton’s physical challenges never stopped her from giving the most precious gifts to others: hope and love.
After the service, we returned home and when time came for afternoon dismissal of school, I walked to the corner of our street, waiting to walk my son home from the bus stop. A car approached and it was Chris, Laurie, and Emily returning home from the service. They stopped and rolled down the window and chatted a bit, as we often do when we pass one another in the neighborhood.
As they drove away towards their house, I caught a glimpse of the sun peeking through the clouded skies above.
There was a heart in the middle of heaven.
I fumbled to open my phone and take a photo, the shapes dissipating as quickly as they formed. I watched the clouds shift and slide across the sky and felt the slightest breeze wrap around me.
I believe Ashton sent us her own hearts of hope right in the moment we needed them most.
Can you see the hearts in my photo?
Can you see the hearts in those you meet?
In honor of Ashton Friedl, the family has asked for donations to the Ara Parseghian Medical Research Fund (APMRF) at Notre Dame which is dedicated to finding a cure for Niemann-Pick Type C (NPC) disease. For more information, please visit https://parseghianfund.nd.edu/it-comes-in-pink.