Five years ago today, my life and my child’s life changed forever. My daughter went in for a 9.5-hour brain surgery—a surgery that would alter her in ways I could never have imagined. The day was excruciating. It felt like an eternity. What began as a necessary medical procedure quickly turned into a long, grueling journey that has continued to shape her, and our family, in ways I still struggle to fully understand.
I’m grateful for how far we’ve come, but that doesn’t erase the deep grief and emotional toll I still carry. No one could have prepared me for the aftermath of that surgery—the immense loss that came with it, the loss of the child I once knew, even though she was still here with me. That grief is unlike anything I could ever have imagined. It’s a grief that exists in a space between life and death, between who she was before and who she has become.
I’ll never forget the day I was told the surgery went well and that I could head to her room in the ICU. I took the elevator, each floor feeling like it took an eternity, and when I stepped off, I saw them rushing her down the hall to do a CT scan to check for a brain bleed. In that moment, my heart stopped. I was holding a bag of cookies someone had brought to me—cookies that felt like a cruel reminder of the normalcy I was clinging to—and in a flash, I threw the bag aside and collapsed to my knees.
Her temperature was dangerously high, and I stood there, helpless. No brain bleed, but the fear was all-consuming. And then, I watched my child—who had just undergone an incredibly delicate and life-altering procedure—struggle to wake up, her mind and body slow to respond. The words coming from the doctors were full of medical jargon that I couldn’t fully process, words like “complications,” “longer-than-expected recovery,” and “uncertain outcomes.”
What hurt the most was the realization that no one had prepared me for what came after. The doctors do this every day; it’s routine for them, but for me, it was an entirely new and terrifying experience. They can’t always understand what it’s like for the family—the emotional weight that comes with seeing your child in such a vulnerable state. They didn’t warn me about the depth of the grief I would feel—the kind that doesn’t fade with time. It’s a grief that lingers and follows me, haunting my every step.
While my daughter doesn’t remember much about what happened to her, I can’t seem to shake the images from my mind. The memories of her lying there, the pain, the confusion, the uncertainty—they are forever etched into my mind. Time, as they say, doesn’t heal all wounds. It doesn’t make the memories easier to bear. In fact, it sometimes feels like it amplifies the longing, the grief, and the distance between who she was before and who she has become.
This experience has given me a new understanding of grief—one that’s particularly isolating when your child is still here, still living, still breathing. She’s physically with me, but the child I once knew—her personality, her joy, the way she saw the world—feels so distant. What they don’t tell you about a surgery like this is that it doesn’t just change your child’s body, it changes their spirit, too. It’s a transformation that’s hard to explain and even harder to accept.
Yet, through it all, I have found solace in talking to other families who understand. Through Bryttan’s Battalion, a support network I never expected to need but am so grateful to have, I’ve connected with families who feel the exact same way I do. Families who have watched their children go through surgeries, traumas, and struggles that no child should have to endure. We share a unique grief—one that only those who have experienced it can truly understand. We carry the weight of seeing our children struggle and transform in ways we never imagined, all while wishing more than anything that things could be different—that we could find a cure, a solution, something that would prevent the pain.
I wish so deeply in my soul that we could find a way to change these outcomes, that we could take away the suffering, the uncertainty, and the heartache that come with these life-altering procedures. I wish we could give our children the normal lives they deserve—lives without surgeries, without pain, without the fear of what each new day may bring. But, for now, all we can do is carry the love we have for them and keep moving forward, no matter how difficult it may be.
The journey has been long and hard, and though we’ve made progress, I still find myself grappling with the aftermath of that surgery. But every day, I find strength in my daughter’s resilience, in the way she has continued to push forward, even when the road has been anything but easy. I’m proud of her—proud of the fighter she is, and proud of the life she is still building despite everything.
Five years later, I can say with certainty that the strength of a parent’s love is immeasurable. Even as the grief continues to shape me, I will never stop fighting for my child, and I will never stop hoping for a better future for her and all the children facing similar struggles. The journey is far from over, but we are stronger than we were before—and I will keep fighting for my girl, for our future, and for the hope that one day, things will be different.
