His name is Jackson Kenneth Facile, and he was born Oct. 24, 2019, with AVSD, a hole in his heart. When he died 4 months and 14 days later, he left his family with a hole in theirs. His mom, Monica, vividly recalled the moment of his birth. “He was born facing up, so I was the first one to see and I got to say, ‘It’s a boy!’” Monica knew he was perfect and thought, “Maybe all the ultrasounds were wrong? He didn’t have Down Syndrome? He didn’t have a hole in his heart?”
As she held her newborn son, the nurse in the background was counting down the seconds until Jackson would be swept away to the intensive care unit for medical support and tests, which would confirm he did have Down Syndrome, and he did have a hole in his heart. Monica, her husband Tyson and their children Elizabeth, then seven; Addisyn, then five; and Mason, then three; knew their baby would have challenges at birth. What they didn’t know was how brief his time with them would be.When he was home, Jackson smiled with delight at his siblings who provided non-stop entertainment. He had piercing blue eyes that intently studied his surroundings. He loved bath time when his arms and legs were free of the swaddle that kept him from pulling his feeding tube from his nose. Jackson sported a hairstyle called “The Jackson” by all. It was created by Grams Miriam through the many hours she spent caressing his sweet brow as he battled many fevers.Because he had Down Syndrome, his progress through expected milestones was delayed. “That’s a hard one,” Monica says, recalling Jackson’s milestones. “There are so many he never reached.” But he was tough and exceeded the expectations of his physical therapists. He had a way about him. A friend told Monica, “To look into Jackson’s eyes was to see a soul too precious for this world.” And he was.The hole in Jackson’s heart was larger than expected. He was in and out of the hospital and became gravely ill with a respiratory infection. At one point, his heart stopped beating for several minutes. In a final attempt to save Jackson’s life, the Faciles brought him to one of the best children’s heart hospitals in the world in Ann Arbor, Michigan. The Facile family cannot say enough about the wonderful care they all received from the doctors and nurses in Luverne, Sioux Falls, and Ann Arbor.It was too late. Jackson really was a soul too precious for this world. Tyson and Monica spent Jackson’s last moments with him on March 10, 2020, in “the passing room”. “It was a huge bed, and we could all fit in it,” Monica said. “There was a mural of a path and stars on the ceiling. We took Jackson’s swaddle off so he could be free.” As Jackson died, dark clouds over the hospital parted and a bright sunbeam filled the room. “I just knew he wasn’t walking to heaven, he was running,” Monica said.The Facile family returned to their Luverne home in a minivan driven by Jackson’s Godfather, Lucas Stoffel, three children in car seats and Jackson’s body beside them wrapped in soft blankets. Monica’s eyes tear up when she recalls three-year-old Mason looking at the blankets and saying, “Mom, Jackson’s not gone. He’s right here.”Monica and Tyson want to tell Jackson’s story. “Sharing the details helps me grieve,” Monica said. That’s why she’s involved with the Child’s Remembrance Garden was designed by Jackson’s Godfather, which will give parents a place to grieve, tell stories and, maybe someday, find joy. Monica said, “My prayer is that people will learn from Jackson’s short life that grief and happiness can coexist.”
Jackson Kenneth Facile was born with a hole in his heart. When he died 4 months and 14 days later, he left his family with a hole in theirs.
Founding Board Member & 2024 President
Monica Facile
