03/06/2026
There’s something people don’t always understand about caring for a terminally ill child.
It is living in two realities at the same time.
One reality is the medical one. The one filled with appointments, scans, medications, machines, and words no parent should ever have to learn. It’s hearing doctors explain statistics and outcomes, and slowly realizing that the future you once imagined for your child may look very different. It’s facing conversations that feel impossible. Decisions that break your heart. And the quiet moments where the weight of it all feels almost too heavy to carry.
But there is another reality we live in too. It’s the reality where our child is still here. Still smiling. Still loving. Still fighting. It’s the reality where hope still exists. Hope doesn’t mean we are in denial. It doesn’t mean we don’t understand the seriousness of what our baby is facing. We hear the doctors. We see the changes. We understand the reality in front of us better than anyone. But hope is something deeper than statistics. Hope is choosing to believe that miracles can still happen. Hope is trusting that God has the final word. Hope is waking up every day and loving our daughter with everything we have, no matter what tomorrow may bring.
Caring for a child with a terminal illness means learning how to hold grief and hope in the same heart at the same time. Some days are heavy. Some days are full of fear. Some days we feel like we are barely holding ourselves together. But then there are moments — beautiful, ordinary moments — where our child smiles, laughs, squeezes our hand, or does something that reminds us that she is still here. And in those moments, hope feels alive again.
We don’t know what the future holds. But we do know this: we will continue to love our Kinlee fiercely, advocate for her endlessly, and believe that God is still capable of miracles.
Until the very last breath, we will keep hoping.
