Zayden

Jessica had eight months to mother her beautiful baby Zayden. A lifetime of being crib-side, of the best snuggles, of learning his quiet, subtle cues. Zayden’s life was mostly lived in and out of hospital rooms, in the presence of medical teams who never thought he would live as long as he did, in the tender care of his parents and their extended family.

When Jessica was asked about her favorite moments with Zayden, she had a hard time narrowing it down to just a few. Most of those favorite memories were in the small moments of joy—the first time she held him a week after he was born, when he first opened his eyes two weeks later, when he tried to lift his head at two months, and hours spent cuddling. Zayden didn’t cry or smile or move much, but Jessica talks about his personality. There were things he clearly did and didn’t like, and he was able to hear out of one ear, which allowed him to be aware of the people around him. He did like: Frozen, Lilo and Stitch, Zootopia and Encanto. He did NOT like: Moana or when his mother or father left the room. And Cars…it depended on whether Mom or Dad was around. With Mom, he had no interest, but with Dad, Cars was the “boys time movie.” Zayden was also a Disney baby…Disney movies, music, and Beanie Babies all around him.

Jessica spoke about the community who showed up for Zayden. Dad worked but would make the drive back and forth to the hospital to be with Zayden. Jessica said, “A lot of people paused their lives to support us.” Her mother, her sister, and her cousins and would show up to help and offer companionship in the hospital. And when Zayden went home in the last weeks of his life, Jessica’s mom and sister moved into their one-bedroom, one-bath home to help provide round-the-clock care. Her aunt would come to sit up with Zayden while the others slept. Family and friends coordinated a fundraiser to help cover bills. Jessica recalls, “What helped me stay out of my head so much was because we had so much support.”

The staff at Children’s Hospital introduced Project 4031 to Zayden. His parents were focused on having as much quality time with Zayden as possible. Project 4031 helped with a car payment to facilitate travel back and forth to the hospital and the internet bill to help the family stay connected. Zayden’s life reminds us that joy can be found in the simple and tender moments of togetherness, a beautiful and enduring lesson of hope.