"I am sure many of us have heard it said that you never know how strong you are until being strong is the only choice you have." Over the last three and a half years, this saying has become more than words for our family—it has become our reality and our testament to resilience.
On September 2022, the morning of Hudson’s first birthday, we received a phone call that would forever change our hearts and lives. While Hudson's health challenges began earlier—at just eleven weeks old when he experienced his first seizure—the gravity of his condition fully set in that day. Life as we knew it had changed. We had no idea what storms lay ahead or how they would shape us.
Stepping into the Unknown
Navigating through this uncharted path as first-time parents brought an overwhelming mix of emotions—fear, doubt, and feeling utterly incapable. Suddenly, we were faced with making difficult medical decisions, learning complex medical terms, and doing everything we could to protect our little boy. We were thrown into a world no parent feels prepared to enter—a place filled with uncertainties and countless questions.
Parenting a child with medical needs is an emotional rollercoaster. It’s a role that brings unexpected challenges and lessons every day. And yet, amidst it all, we have learned to lean into the unknown, grow stronger, and focus on what truly matters—our love for Hudson and building a joyful life for him.
Adapting and Advocating
From that day forward, we made a decision to do everything in our power to help Hudson thrive. We followed our instincts, became researchers and students of genetics, and reached out to parents across the world who intimately understood this unique experience. We contacted leading neuro-geneticists from Iowa City to Boston, seeking their guidance and knowledge.
We allowed Hudson to be our greatest teacher. His strength and resilience inspired us. And in the moments we felt powerless, we turned to God, continuously reminding ourselves that we are not in control—but we could place our trust and faith in Him.
Through your overwhelming generosity, we have been able to provide Hudson with opportunities that empower his growth and learning. From finding communication methods that work best for him to encouraging his exploration of how his amazing body works, we’ve embraced every possible resource. Together, we’re not just helping Hudson—we’re creating brighter futures for all Chromosome 14q warriors.
Living with Grace and Joy
Above all, Hudson has taught us the power of presence. Life is unpredictable, and no one is immune to its surprises. Hudson has reminded us to “seize the day,” to find joy in the smallest moments, and to choose grace for ourselves and others, even in difficult times.
Every day, we strive to live with gratitude—to celebrate Hudson’s victories, big and small. He has given us a renewed perspective—a beautiful lens through which we see the importance of compassion, connection, and hope.
Hudson’s Journey, Our Community
Hudson’s story is bigger than just our family. It is about building a supportive community, raising awareness about life with rare genetic conditions, and extending grace to ourselves and those around us.
To every caregiver, parent, medical professional, and compassionate individual reading this, we want you to know this truth—strength isn’t about knowing the path ahead or having all the answers. Strength is about stepping forward, even when the way is unclear. It’s about creating joy when it feels impossibly hard to find and leaning into the people, faith, or practices that bring you peace.
Seize the Day Together
Hudson has been our light, teaching us more about life and love than we could have imagined. Through him, we’ve learned to cherish every moment and fight for the future he deserves. And we want to share that spirit with everyone touched by these words.
To those walking similar paths—know that you’re not alone. Whether you’re navigating new challenges, searching for answers, or finding it hard to live in the moment, we want to encourage you. There is strength in sharing your story. There is power in community. And there is hope in choosing joy.
Hudson, thank you for showing us how to seize the day, gracefully and joyfully, every single day.
With so much love and determination,
Torri & Luke McCook