Thoughts on Grief from a Mother Who Lost Her Child

Erin Slivka is our guest blogger today. Erin and I went to high school together and like many elder millennials, we’ve kept up with each other through Facebook. A few years ago, Erin’s daughter Ayla was diagnosed with a rare and devastating disease. Erin’s posts became much more than the little glimpses of her life she usually shared. She began writing about Ayla’s battle, the love and hope they shared, and then the unimaginable grief she experienced after losing Ayla.

My sister died two years before Ayla, and while our grief is different, I found comfort in Erin’s writing. There is something about hearing from another person who understands loss in a profound way—who doesn’t try to make it neat or easy but instead acknowledges its weight and evolution.

I asked Erin to write a blog about how her grief has changed over time because I know her words will touch others just as they have touched me. Grief isn’t something we move past—it’s something we carry, something that shapes us, and at its core, is just another form of love. Erin captures that beautifully in what she shares below.

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I like to think I knew a feather-light version of grief from a young age with the loss of family members, beloved pets, young love, and even a dear friend. That feather-light version was like a thin mist surrounding me, until the breeze came through and carried it away. Some of the fog lingered, as grief always does, but it was opaque and passable. 

However, on July 6th, 2021, a heavy grief walked through my front door, unannounced and unwelcome. It arrived in all of its forms—weighty and unrelenting—and I quickly understood that it was here to stay. The day before, my family and I had been vacationing when our oldest daughter, Ayla (almost six years old at the time), began to experience some subtle yet odd symptoms. Twenty-four hours later, when we arrived back home, I found Ayla and myself in an ambulance on our way to the Childrens Hospital where an hour later, we were told she had an untreatable and incurable brain tumor called Diffuse Intrinsic Pontine Glioma or DIPG. 

The statistics for DIPG are grim with the average survival rate post diagnosis being 9-12 months. The anticipatory grief felt impossibly oppressive, like I was stuck under a granite boulder made out of questions like why, what if, how long, how do we keep her smiling, how do we save her.

The grief was so heavy and hazy yet so clearly defined by what I was told would eventually happen. This version of grief was rooted in the lifetime I expected to have with Ayla, yet would never get. Ayla passed away on June 29th, 2022.

By God’s grace, that boulder of grief didn’t crush me even though some days I welcomed it to. Acceptance settled into my bones and all the layers of questions began to dissolve, transforming the dense boulder into a stone I could carry. I can never put it down, nor would I want to, because what I realize now is that the heavy boulder was made of fear. And when the fear dissipated it left behind something that can never dissolve—pure love. Grief is simply love in another form, and I will always, willingly, carry it.

Almost three years after Ayla gained her angel wings, the grief I hold, like any relationship, has evolved. There are highs and lows and there are certain times of the year, cyclical and certain, where difficult memories surface. It’s like I’m riding a bike down a straight, smooth road and every so often I hit these deep grooves that shake and bump and sometimes even stop the bike. Whether the wheels progress forward or reverse backward, the deep grooves are there, causing a jolt in an otherwise calm ride. Life is bumpy. Grief is deep. 

Whether our grief is anticipatory, new, or long-term, through our own will or by human conditioning, we begin to expect the bumps—sometimes even welcoming the sight of grooves and jagged rock over a road that appears as smooth as polished marble. 

That is when you realize grief doesn’t come to torment or smother you. Grief shows up to evoke emotion, to show us the depth and dimension that exists in our life. It comes to hold our hand—comfort us in a way—and prove to us that there is more than “just the sad” in the triggers, trauma and difficult memories. In the memories we have there is love, beauty, purpose, and yes sometimes sadness, sometimes anger, resentment—but always love too. 

Grief grants us the ability to feel multiple emotions at the same time. It is not the fearful questions, the what ifs, the should have beens, or the guilt that can so easily knot itself in every memory we have with our loved ones. Grief is the friend helping us untie those knots. It’s the friend silently by our side when we are brought to our knees sobbing and then standing up laughing thirty-seconds later. It is the friend urging us to feel, to be real, to be vulnerable, to be open, to be human. Grief is the stone we carry in our pocket—its weight a quiet reminder that our loved one is always with us.

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Erin Slivka is the Founder of The Ayla Foundation. The Ayla Foundation is a federal nonprofit organization on a mission to raise awareness and funding for research for pediatric brain cancer, focusing on cancer’s biggest bully, DIPG. To learn more, visit aylasarmy.com or follow @aylas_army.

Special thanks to Erin for generously sharing her words on grief. I was inspired to make a print for Ayla. I absolutely adore learning that her favorite color was “rainbow.” Like all loved ones lost, she'll live on in our hearts forever.

If you're struggling with a loss of your own, also read 5 ways to cope with death and connect to a lost loved one.

With love,

Alison Rose

Social media: @alisonrosevintage

Shop: alisonrosevintage.com