By Dave Andrusko
It’s one of those stories that simultaneously tears you up and gives you hope. But for perspective, let’s go back to 2014.
Remember Jenna Gassew and Dan Healy, the couple so wise beyond their years, and their son Shane Michael? They’d discovered that their unborn baby had anencephaly and would be unlikely to live more than a few hours, if he survived the birthing process.
Dan told ABC 13,
“Most families wait until their baby is born to start making memories and traveling to places with them.” He added, ‘We understood what it was and knew that our time with our son could be very limited, so we wanted to make the most of the time that we had with him.
“One thing we would want people to take away is that each human life is so valuable and that it’s important to live each day to its fullest potential.”
They created a Facebook page and recorded the memories they made with Shane. They visited family, went to the zoo, attended sporting events, made it to the top of the Empire State Building, and took their unborn son to some of their favorite childhood places.
Shane’s ever-so-brief life outside the womb was beautifully celebrated.
In that same life-affirming, every-life-matters vein, I just read about Zailynn Mars, diagnosed with spinal muscular atrophy in August. It is a devastating disease for anyone, let alone an eight-month-old. It “affects the motor nerve cells in the spinal cord, taking away the ability to walk, eat or even breathe,” according to Nicole Pelletiere of ABC News.
But, as Pelletiere writes,
The family of a terminally ill infant girl is making sure she gets the most out of life by checking items off a bucket list they created following her diagnosis with a genetic disorder that gave her two years to live.
“Mainly we are trying to create memories for our daughter that every kid should experience,” dad Cory Mars of Neenah, Wisconsin, told ABC News. “People have been helping us check things off her bucket list. It makes me see as a father that there are good people out there.”
“They are helping us fill my daughter’s life with happy things,” he said.
As the father of three grown daughters and one five-year-old granddaughter, several of the bucket list items hit me on both counts–hard. Pelletiere wrote
In an effort to give baby Zailynn the happiest times of her life, her dad and the rest of the Mars family created a bucket list composed of 51 items to check off.
“Number one is to have daddy walk me down the aisle,” Mars said. “Being able to walk my daughter down the aisle at her wedding is the best thing I’d ever do that I’d never be able to do.”
In order to improvise for life moments such as weddings and prom, Mars said he was able to walk with Zailynn down the aisle at a friend’s September wedding.
For No. 29 on the list — go to prom and have pictures taken — family and friends are holding a mock prom for Zailynn at the family’s local church in Fairwater, Wisconsin.
Zailynn’s bucket list is comprised mostly of the little things we would do with our daughter –or watch her do–as she grew up. Everything from visiting a farm, to looking out over the ocean, to dressing up as a princess.
Why is the Mars family doing this? To enjoy the time they have with Zailynn and to raise awareness about this deadly disease. Just before we read the complete list of 29 items, Pelletiere quotes Mr. Mars:
“With my daughter’s story, we want her to bring a positive impact on everybody’s life,” Mars said. “She a very excited baby — happy to see anybody. If you look into her stroller, you’ll definitely get a smile.
“She’s 100 percent a daddy’s girl