Courtney Adair Johnson

Ossie and I 

iPhone, photoshop 

2018-2024

 

My son Ossie was born not breathing and was diagnosed with Hypoxic Ischemic Encephalopathy (HIE), lack of oxygen to the brain, and spent 45 days in the NICU. Later, he was diagnosed with cerebral palsy and was nonverbal and non-mobile. Care became the shape of our days, navigating hospitals, doctors, nurses, and systems that demanded more labor than they gave support. This is the story for most caregivers. 

 

Ossie loved baths. We would take them together, and he would even protest when it was time to get out. Just before getting in, I began photographing us, these quiet moments of holding.  We continued until his death at age 6. These images, captured in the threshold between daily ritual and live, became my archive of intimacy, caregiving, and love.