Have you ever driven past a beaten-up old mobile home surrounded by all manner of lit-up, blown-up, flashing and waving Christmas decorations and wondered: Why would they spend hundreds of dollars when they can scarcely afford a roof over their heads?

I thought of this last Friday as I pulled into the driveway of the Benoit home on N.C. 97 just outside of Zebulon, where a traffic-stopping display of Christmas inflatables and other decorations overwhelms the singlewide rented by this family of six.

But here I know the reason for the Christmas excess. He lies in a crib against one wall of the living room, tethered to a machine that breathes in and out for him.

Ethan Benoit is home.

Ethan, who suffers a rare and deadly disorder that causes his bones to be misshapen and affects every one of his bodily functions, was released the day before Thanksgiving with a No Resuscitate order and a living room full of medical gear.

I have written about the Benoits before. And it is in large part the generosity of readers that has made it possible for the family to keep its head above water -- barely -- during this final chapter of Ethan's short life.

For a while, the Benoits considered subjecting Ethan to a series of painful surgeries that would have cost millions of dollars -- and most likely would have been fruitless.

In the end they decided to bring their son home and savor the time he has left.

Some of the experts have told the Benoits that Ethan is not likely to survive to see his first birthday, Dec. 21.

As always, Ethan's parents, Shane and Sheree Benoit, are more optimistic.

But there is no mistaking the stress of being Ethan's healthcare providers while parenting and home-schooling his three siblings, ages 3, 10 and 14. "We're all fighting like cats and dogs," Sheree said.

Shane and Sheree sleep on comforters next to the crib to monitor Ethan in the night. Ethan's breathing slows dangerously; with each passing night, he is harder and harder to awaken.

Before Ethan's final discharge from the hospital, Shane and Sheree forced themselves to make preparations for the end. They chose a grave marker that will carry Ethan's full name and his nickname: Spitty. Before his strokes last May, he smiled and gurgled and, well, spit. Now he lies still, his eyes vacant.

Then the Benoits decorated for the "root-tootin'-est Christmas ever," Shane said. "Ethan can't see it. But the rest of the kids can.

"They haven't had much of a holiday since he was born," he said. "It was something we had to do for the whole family."

When I visited last week, a small artificial tree in the living room twinkled with red and white lights and Winnie the Pooh ornaments. Ethan, center stage in a crib donated by an N&O reader, was dressed in a fuzzy Santa suit and hat.

And outside is the menagerie of inflatables: A massive train, a nativity scene, Santa, Pooh, Tigger, Frosty and a Grinch continually climbing up out of a chimney. Inside a massive snow globe, another Santa beams as a storm of snow swirls around him. A waste of money? Perhaps.

But inside the trailer is a family weathering a storm of its own, wondering how long Ethan will live, hoping he will make it to Christmas Day.

Get $150+ in coupons in every Sunday N&O. Click here for convenient home delivery.