A Bittersweet Bucket List
By Deirdre McQuade
September 12, 2014
Usually when people say that a goal is on their “bucket list” it means that sometime in the as-yet-unplanned, perhaps even distant, future, they’ll hopefully get around to doing something they always wanted to do before they die: memory-making, picture-taking adventures like hang-gliding, traveling to an exotic land, or even writing one’s first novel.
But today I learned about a very different bucket list. Dan and Jenna Haley, young, faith-filled parents from Philadelphia, are expecting their first-born child next month. In April, they learned that their son, Shane Michael, has anencephaly which means that he is missing parts of his brain and possibly skull, and so is not expected to live long. Depending on the severity of his condition, doctors say he may survive as little as a few hours or may live over a year. To celebrate him during Jenna’s pregnancy, they crafted a bucket list of their own favorite things to do. In a local news story
, Dan said: "Most families wait until their baby is born to start making memories and traveling to places with them. We…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."
At the time of this writing, Shane Michael is 35 weeks old in Jenna’s womb, and has been with his parents to many of the places that were significant to them as children: zoos, Delaware beaches, and an aquarium. He’s ridden the famous Wildwood, NJ, ferris wheel, attended family baseball games, and been with his praying parents at the shrines of St. John Neumann and St. Rita. He’s “met” the Phillies and the Flyers, enjoyed Geno’s cheesesteaks, and made a field trip up to New York City, where they visited the Statue of Liberty and Empire State Building, among other sites. He and his parents were also honored by friends and family members with a “shower of love” – a different kind of baby shower surrounding these courageous parents with encouragement and support, as well as affection for their little, severely disabled boy.
The Haleys have openly shared their adventures with over 100,000 followers on their “Prayers for Shane
” Facebook page. They write: “We are asking for your prayers and support and that God grants us as much time as possible with our beautiful son. Shane has already proven to us that each day must be lived to the fullest and that is exactly what our little family is doing.”
What an incredible witness to the dignity of life! This beautiful couple resisted not only any pressure to abort Shane because of his medical condition, but also the temptation to hide him from the world. Their story shows that every person deserves to be loved. In sharing their bittersweet journey with others, they have shared their son Shane Michael with a huge community who, in turn, have rallied around the couple in their joys, sorrows, and fears. May their story be an encouragement to other families facing adverse prenatal diagnoses.
Deirdre A. McQuade is Assistant Director for Pro-Life Communications at the Secretariat of Pro-Life Activities, U.S. Conference of Catholic Bishops.