Family finds love, life, richness in death

The Chapin house near downtown Orlando is a tranquil place these days.

Soft acoustic music wafts from the pastel-colored bedroom where 15-year-old Blair rests.

Her parents stay busy taking calls from friends and family, who send meals and slip notes of support through the mail slot in the front door. But they never stray far from Blair’s bedroom. Her mother, Susan, checks in and puts a cold cloth on Blair’s forehead. Her father, Roger, sometimes crawls into bed with her to sing a song, watch a video or simply nap by her side. It is serene. And loving. And tragic. For Roger and Susan Chapin are waiting … for their daughter to die.

With hospice nurses present, they have begun the final chapter inevitably associated with Sanfilippo syndrome, a rare degenerative condition denying Blair’s 80-pound body the digestive functions she needs to live.

You might expect the house to be filled with mourning. In many ways, it is.

But the Chapins also spend their days giving thanks for all the love and light Blair brought into their lives — for how much “richer” they are because of her.

That was how Roger described it when telling his younger daughter, Grey — a sophisticated 13-year-old who’s fiercely protective of her big sister — that the end was near.

“We cried together,” Roger said. “We talked about her body giving up, how it’s tired and she’s ready to go to heaven. But we also talked about how much richer our lives have been because of Blair.”

Blair opened new doors for the family — sometimes quite literally, Susan said, recalling the time that Blair ran next door, flung open their neighbor’s front door and burst into their kitchen.

You get to know people better that way.

“She has drawn people into our life,” Susan said. “They fall in love with Blair, and we fall in love with them because they love Blair.”

It was this sense of gratitude that drew me to the Chapins’ house last week.

The family had been sharing fond memories and notes of thanks on social media, and I found their spirit of gratitude rather remarkable. For I simply can’t imagine. The crises in my own teenage daughter’s life involve trying to select the perfect monologue for her next theater audition and figuring out how she can earn enough money to fill up her gas tank.

Blair’s struggle has been simply to live.

It has been a long, steady decline — from a healthy start to diagnosis at age 6 to years of therapy and then a loss of motor skills.

But the family united through