One minute you’re managing the usual routines of disability care and the next you’re being told your child might die tonight. Steve takes us back to the day his son Ben, a boy his family thought they’d have forever, suddenly deteriorated and was rushed to the Women’s and Children’s Hospital. What follows is raw, clear-eyed, and deeply human: the speed of emergency decisions, the kindness of hospital staff, and the moment the world narrows down to holding your child and saying what you need to say.
We also talk about the complicated choices families face under pressure, including whether siblings should be present, how shock affects memory, and why even a peaceful passing can leave lasting trauma. Steve shares how faith and prayer became part of his coping, not as a tidy answer, but as a way to express love and let go when there is nothing left to fix.
From there, we explore what parenting a child with profound disability can teach you about unconditional love, responsibility, and perspective, plus why grief can transform over time without ever disappearing. We dig into practical coping strategies for anger and negativity, boundaries that protect your mindset, and the surprising ways a child’s impact can keep shaping a family long after loss.
If you’re navigating disability parenting, child bereavement, grief, or the search for resilience after tragedy, this conversation will stay with you. Subscribe, share this with someone who needs it, and leave a review to help more parents find these stories.
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