In some ways, Christmas at the Alexander house in O'Hara will be the same as it always is.
Tonight, Neil and Suzanne Alexander's family and a few relatives will have a seafood dinner with food from the Strip District. In the morning, 10-year-old Abby and 8-year-old Patrick will do the "rip and tear," as their mother calls it, as they usually do on Christmas morning.
This year's Christmas twist will come with their last two presents.
Second-to-last will be two tickets to see a Christmas show at Radio City Music Hall that night and last will be two flights to New York City for that afternoon. Their bags will be packed and ready to go.
"We'll be on the plane by 2," Mrs. Alexander said.
It's something they've long planned -- surprising the kids with plane tickets and leaving Christmas Day -- but now their plans have a new level of urgency.
In June 2011, Mr. Alexander, 47, an executive at Downtown-based financial firm Hefren-Tillotson, was diagnosed with amyotrophic lateral sclerosis, more commonly known as ALS or Lou Gehrig's disease. The disease affects the motor neurons and eventually leads to paralysis and difficulty breathing.
They created LiveLikeLou.org, a fund to support ALS-related causes.
And they became more intentional about making memories, the little ones like the sound of Mr. Alexander's laugh and the big ones like family trips.
"You do have a limited sense of time," he said.
They went to Washington, D.C., for the Fourth of July and to Columbus, Ohio, on a spur-of-the-moment chance to meet President Barack Obama. They'd always planned to return to Ireland, their honeymoon spot, for Mr. Alexander's 50th birthday. Instead, they went in August.
Christmas Day, they'll fly to New York City for a four-day trip that will include an ice skating session with his former Fordham University classmates and their children.
ALS has not yet slowed him, but it has made Mr. Alexander's hands weak. He clears his throat frequently and has a slight limp. Still, they've made many plans for the coming year -- a romantic trip to St. Lucia, a visit to Florida for spring training, a six-week trip across the country in the summer.
There's no way to know how quickly or slowly Mr. Alexander's ALS will progress. His prognosis may be bleak, but their family is still making plans, Mrs. Alexander said.
"We still have time," she said. "Neil's talking about one or two years from now, which is actually a big difference from a year ago.
"And I think that's one of the things that keeps us going. We have faith that we have a couple more years."mobilehome - region - health