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Russell Draper

Navigating Bad Days


As Teddy's dad, my daily journey is akin to riding a rollercoaster of emotions, and on the challenging days, anxiety looms large. The smallest concerns morph into overwhelming worries, especially when Teddy is grappling with seizures, discomfort, or excessive secretions. Addressing these issues becomes the day's priority, and the absence of immediate answers can transform worry into frustration and, at times, even anger.


Watching Teddy endure the impact of his epilepsy and the aftermath of HIE (Hypoxic-Ischemic Encephalopathy) since birth is profoundly unfair. There are moments when I wish I could swap places with him, if only to offer a respite from his constant struggles. The sound of his laboured breathing for hours or witnessing him convulse due to seizures is a parental anguish no one should bear. The desperate cries of discomfort evoke an intense desire to comfort him, yet the reality is that only potent sedative drugs can provide relief.

Living through these daily challenges is an unbearable experience, where anxiety can easily transition into depression. The weight of waiting for medical decisions and hoping for the effectiveness of treatments intensifies the emotional toll.


Our lives were not chosen, but we persistently strive to keep our heads above water, resisting the overwhelming tide of our reality. The anxiety and frustration from witnessing Teddy's struggles translate into a heightened sensitivity to the world around us. Even seemingly trivial remarks and observations become poignant reminders of the life we once knew.


Before Teddy's arrival, I was a regular at the gym, devoted to a healthy lifestyle. However, in the past few years, that time has been absorbed by the intricate demands of caregiving, navigating medical appointments, and fulfilling work obligations. What was once an opportunity for personal well-being and self-care has transformed into a juggling act of responsibilities.


It might feel selfish to talk about personal struggles, but acknowledging these additional challenges is essential to understanding the complex tapestry of emotions woven into our daily lives.


These shifts in lifestyle, though seemingly minor to an outsider, magnify the weight of our daily challenges. The constant reminder of the responsibility to keep a roof over our heads and food on the table adds another layer to the complex tapestry of our lives. It forces me to confront the reality that, in choosing to prioritize work, I'm also foregoing precious moments with my family.


The societal expectations and norms that once shaped our lives have given way to a new reality—one that demands resilience and adaptability. It's an unchosen journey, but we persist, driven by an unwavering commitment to Teddy's well-being and a determination not to let the shadows of our circumstances consume us.


As we share our experiences, it's a plea for understanding, a call to recognize the multifaceted nature of our struggles. It's a testament to the strength and endurance required not just by Teddy but by our entire family. In the face of these adversities, we find solace in our collective resilience and an unyielding hope that, even on the darkest days, there's a glimmer of light on the horizon.


In closing, it's crucial to acknowledge that these words reflect my personal feelings on our situation. I understand that everyone is facing their battles, and this isn't an assertion that my life is more challenging than anyone else's. Each journey is unique, and it's the collective empathy and support that help us navigate the complexities of our individual paths.


Russell x

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