Keep Hope Alive in the Face of a Devastating Diagnosis

Crushed. Broken. Destroyed! In a single breath, your world turns upside down as a devastating diagnosis is revealed. The words hang heavy, echoing through the chambers of your soul. They hold the power to unravel your hopes and dreams, leaving you feeling utterly helpless and afraid. It’s a life-altering moment that can make you question everything you thought you knew.

Time stands still. The room feels suffocating. You try to grasp the meaning behind those words, but they slip through your fingers like grains of sand. Emotions surge like a turbulent sea, crashing against the walls of your fragile heart. Everything blurs into a haze as the world around you fades away. Your mind races, desperately searching for answers, for a way to make sense of this incomprehensible reality. But it’s like trying to catch smoke with bare hands; the more you reach, the more it eludes you.

My world came crashing down on January 21st, 2021, around 2 PM when my cell phone rang. The neurologist was calling to share the results of my nephew’s liver biopsy. We had wanted an answer for some time, as my nephew had been experiencing a constant cycle of symptoms, and the worst part was not knowing why. But I knew that the results were not favourable.

Elevated levels of the enzyme confirming the presence of CLN3 Batten’s Disease were found in his liver. As the neurologist continued to speak, I felt my heart rise into my throat, tears flooding my eyes, and an overwhelming feeling of devastation and sadness. This was not the diagnosis we were expecting to hear.

I knew what this meant. We had already had conversations surrounding the possibility of this diagnosis. I did my research to learn more about the devastating and rare disease. A degenerative affliction made up of a rare group of nervous system disorders, Batten Disease includes seizures, dementia, behaviour changes, cognitive decline, and progressively worsening speech and motor skill functions. There is no cure, and no treatment, is always fatal, usually by the late teens or early twenties.

Today, my nephew is just a few months shy of turning 19.

The neurologist recognized I could no longer speak. He assured me that I could reach out anytime if I had any questions after processing the news. But as we hung up the phone, I did the only thing my body could do— I cried! How can anyone be expected to maintain their faith after receiving such news? How can anyone find hope in the face of such crushing uncertainty?

The tears flowed uncontrollably as they carried the weight of my shattered dreams for my nephew and the unspoken fears I held back. They fell like a torrential downpour, washing away the remnants of my former self. The future seemed like an impenetrable fog, obscuring any glimpse of hope and light.

Like an unspoken prayer being answered, I remembered the words so passionately spoken at my church by a great man named Jason Lee Jones, who said, “I know Him!” He was speaking from experience because he had been previously diagnosed with stage 4b throat cancer, but his destiny wasn’t complete, and he never lost his faith. “I know Him.” He knew the promise that God made. He believed he was healed, and he was. He was speaking to us as a survivor. If God would do it for him, certainly he would do it for a 16-year-old boy. His destiny isn’t complete either!

As a caregiver, I realized I needed to be strong for my nephew. He was a teenager who didn’t know what he believed yet. When I broke the news to him, I tried to be as positive as possible. I reminded him of his potential and how he would do remarkable things. He surprised me with his response — he said he didn’t care about the diagnosis and that he would be the first to survive this, and that they would use “his stuff” to heal others. I was incredibly proud of him and realized he was a fighter who wouldn’t let anything defeat him.

Being a caregiver is a challenging responsibility that requires immense strength, patience, and resilience. Caring for a loved one with a chronic illness or rare disease can be particularly difficult— it can come with feelings of hopelessness, despair, and grief.

My role was to provide my nephew with the support he needed. I had to be there for him, even when things got tough. I realized I had to stay informed about Batten disease and its progression. I studied research papers and turned to alternative remedies in search of a solution doctors would never dare explore. When a doctor tells you they can’t comment on vitamins and herbal remedies, unable to have discussions about diet and nutrition, you know the system is broken. I had to do the work.

I stood at the crossroads of fear and faith with my crucible at its end. Little did I know that my journey as a caregiver would — not only test my limits but also — redefine my understanding of hope and resilience. In those dark moments, I discovered a profound truth: Hope is not just an abstract concept; it’s a force that can be nurtured and cultivated even in the most devastating circumstances. I realized that being a caregiver for someone with a terminal illness is not merely about providing physical care — it also entails nurturing the flame of hope and nurturing one’s own spirit. It is a journey that demands unwavering strength, unyielding compassion, and a relentless pursuit of knowledge.

The diagnosis may have cast a shadow, but I refused to let it extinguish the light within me. I embraced hope, not as a fleeting emotion but as an unwavering companion. It became my guiding light, illuminating the path ahead and empowering me to confront each challenge with renewed determination.

Being a caregiver for someone with a terminal illness is not easy, but it is one of the most fulfilling roles anyone can undertake. It can be a challenging but rewarding experience. I have learned how to avoid letting the diagnosis defeat me and how to be strong for my nephew. I have come to know Him, and my faith has grown stronger.

As a caregiver, I have realized that caring for myself is just as important as caring for others. It is a journey that I am proud to be on, and I am committed to supporting my nephew every step of the way.

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This post was previously published on medium.com.

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