Losing a child is an unimaginable, unexplainable, and painstaking heartbreak. I’ll never forget my first interaction with a Mother, who too lost her little boy, and her explaining the guilt she felt by having more time. I didn’t quite understand what she meant because Cole’s passing was too fresh and I truly didn’t have more time. I couldn’t sleep, I struggled eating, and even breathing was a challenge. As we head into the sixteenth month since Cole died, this guilt is overtaking and is a constant obstacle for me to overcome. Not many people understand this, but when a child is medically complex, the sheer amount of time in a caregivers day that is dedicated to responsibilities and routines that child requires truly defines your life. For those of us who have walked this path, like myself, the presence of guilt can be an ever-present companion, often manifesting in unexpected ways and compounding grief.
Cole, my beloved child, was a vibrant part of my world. His life was intertwined with hospital visits, medical appointments, and care routines that were as much a part of my daily existence as breathing. His unexpected passing last year has left a painstaking void in my heart, but it has also brought with it a paradox of freed-up time—a time that now feels like a cruel reminder of his absence.
In the days, weeks, and months following Cole’s passing, I truly don’t know if the reality of Cole being gone (forever) was as prevelant as it is now. The sleepless nights, the constant scrolling through his photos and videos, and the squeezing of his stuffed animals as if he was somehow part of those objects kept me from feeling the tremendous amount of guilt I am now faced with. I now find myself faced with an unsettling reality: more free time. The tasks that once consumed my days; Scheduling appointments, daily medical routines, scheduling therapies, coordinating schoolwork, and collaborating with nursing are no longer needed. And yet, instead of relief, this free time has become a source of deep-seated guilt.
I realize that for the average human who has never lost something so impactful and critical to their existence, the thought could be… How could I possibly feel guilty about having more time? Shouldn’t this be a chance for me to rest, reflect, and perhaps even rediscover myself? Logically, maybe. Emotionally, however, it feels like betrayal. The weight of guilt I carry is heavier than any responsibilities or routines I may have had with my sweet boy, Cole.
The guilt I carry stems from several places. First and foremost, there’s the nagging thought that if I have more time, it should be used in meaningful ways. But how does one measure the meaning in the absence of my only son? It feels as though having this time is a constant reminder that I am living in a world where he is not. The mundane tasks that used to define my days now seem insignificant compared to the gravity of his loss.
Additionally, there is the sense of unearned respite. I’m used to the constant flurry of activity that Cole’s care required. Now, when I sit in the silence of an empty house, I’m struck by the overwhelming contrast between then and now. The freedom to pursue hobbies, take up new interests, or simply relax feels foreign and undeserved. The silence, rather than bringing peace, echoes with the absence of Cole. The hardcore truth is I would do anything to have my life back which is only truly my life with Cole in it. I’d do anything to have all of those responsibilities and routines back in my life. I want them to consume me and my family as they once did. I want to feel strapped for time, I want to feel too busy. All of that resulted in my beautiful family of four which I long for every second of everyday. The sudden and unexpected shift from a life consumed by caregiving to one marked by absence is beyond difficult and uncomprehensible. This constant feeling highlights the profound impact Cole had on our lives. I recognize that I cannot avoid these feelings and perhaps someday I will learn to live with these thoughts while continuing to honor the memory of Cole through The Cole Kubista Foundation. The only option to keeping Cole’s memory alive and continuing to make a positive impact in this world like he did everyday, is to help other families create what can never be taken away… Memories! There is not a day that goes by that I forget to write to Cole, to scroll through pictures, and to remind myself how happy he was going to the cottage, Florida, Texas, Tennessee, Mexico, or anyone of the destinations we traveled to as a family.
My path forward will continue feeling like I’m on a rollercoaster, uncertain what drops or sudden turns are approaching. However, I believe navigating this new reality involves finding a balance between acknowledging the guilt and making space for healing. I have a tendency to apologize for getting emotional when I speak about Cole. I’m done apologizing and I will make a conscious effort to ensure I’m not apologizing. I’m truly not sorry, I feel a pain I don’t wish on anyone and my emotions are warranted knowing my sweet boy is gone forever. I will not rush through my grieving process and I will allow myself to feel the full spectrum of emotions. My feelings are validated and anyone who met Cole understands the type of loss the world experienced. That loss is tenfold for our immediate family. Our lives don’t get to just go on. Our lives are forever different and not in a good way. Our lives will always be missing Cole’s humor, his perspective, and his positivity that consumed our household.
The guilt of having more time after the loss of a medically complex child like Cole is a heavy burden to carry. This time is not a reflection of unworthiness or lack of love. It’s a testament to the deep bond shared with our Cole Bear, though no longer physically present, continues to shape our lives in profound ways. Through understanding and self-compassion, we will navigate this complex journey and continue honoring Cole’s memory while embracing the medically complex community and giving back to the families that need it most.