Reagan Breinholt scours the ground outside the children’s hospital for things to hand to her daughter – little things she can touch for the first time. Pine cones, acorns, fallen leaves. The sun is warm, but not too bright, perfect for Piper’s eyes. The toddler rests on a blanket, playing with the giant watch her father, Jake, wears especially for her. Tap, tap, tap. She looks up at him, and a smile stretches across her tiny chin.
Jake picks up a pebble. Piper studies it for a moment and then slowly rolls it back and forth across his palm, nimbly brushing aside the tubes that reach from her neck to the ventilator beside her. “Reagan” – Jake’s voice rises with excitement – “she likes playing with the rock.” His wife abandons her search for pine cones and rushes over. “Pip-squeak, look what you’ve got!” she says. It is not a place meant for picnics, this narrow strip of grass sandwiched between the hospital and a highway. The roar of traffic beyond the pine trees ebbs and flows.
None of this matters, not in the sunshine and fresh air. Not with Piper, outside for just the fifth time in her life, discovering the feel of a pebble against her skin. When Piper was born, it was all she could do to breathe. Instead of 24 ribs, she had 13. Her lower jaw was severely malformed; her tongue partially blocked her throat. Pulmonary hypertension – high blood pressure in the arteries of her lungs – strained her heart.
Within a week, doctors at New York- Presbyterian Hospital diagnosed her with cerebro-costo-mandibular syndrome (CCMS), a genetic disorder with fewer than 80 reported cases worldwide. It affects the ribs and jaw and often other parts of the body, manifesting itself differently in every child who has it. Piper’s symptoms were so severe, it was a miracle she survived birth. There is no cure for CCMS, no website where the Breinholts can devour stories of survival.
Piper turned four in May, but they’ve never been able to take her home to their small apartment in Manhattan, New York. Instead, they have structured their lives around whatever hospital she’s in. They travel three small highways to see her, as many days a week as their jobs as a hairdresser (Reagan) and an attorney (Jake) allow. Early on, Reagan and Jake came to a decision: though they couldn’t make their daughter well or give her the life they’d pictured, their family would be happy.