Dylan Morgan, a well-known former Ranken Jordan patient, passed away about seven months ago, on April 29, 2014. At his funeral, the pastor read from a poem that I have heard a number of times. (Attending young people’s funerals is something of a professional hazard.) It’s called “God’s Lent Child.”

He’ll bring his charms to gladden you

And should his stay be brief

You’ll have the nicest memories

As solace for your grief

In his 21 years of life, Dylan never spoke a word and never walked a step. But he touched many lives and he made a lasting impression on just about everyone he met. Born with a rare and severe condition affecting bone growth, he was remarkable from the start. His appearance was unique, to say the least. Every part of his skeleton was misshapen. He had wide set eyes and a jutting brow, toes and fingers shot off in every direction and he had large curves in his spine and long bones. People were sometimes taken aback a little upon meeting him for the first time. His development slowed and then stopped altogether giving him a perpetually childlike personality. He loved Elmo, balls, throwing things for humans to fetch and taking long walks in his wheelchair with his mom.

He was a handful medically and spent nearly two of his last five years at Ranken Jordan. Without proper scaffolding, major organ systems couldn’t function properly. He needed lots of tubes and machines just to stay alive. Despite modern medicine’s best efforts, his body finally gave out. But not before far exceeding his life expectancy and definitely not before bestowing those around him with some extraordinary gifts.

Everyone who got to know Dylan loved him. In return, he challenged us and he taught us things we might not have learned without him. One of his favorite activities was to admire his own image in a small mirror built into his bedside table. He seemed to relish his own particular brand of beauty. He exuded confidence as if he were James Bond wearing a tuxedo. What a great gift it was for him to show so clearly how little appearance really matters.

Dylan goes to see Ice Age: Dawn of the Dinosaurs at the movie theater.

Dylan also showed us in a very personal and human way the value of doing whatever it takes to give kids a chance to be kids, regardless of the eventual outcome. He personified the mission of Ranken Jordan and the many extraordinary people who helped keep him well against staggering odds. He reaffirmed our belief that what we do is an inherently good thing in spite of the cost, in spite of the challenges. In short, he gave us the gift of being needed. We never asked if it was the right thing to do. He compelled us to pour ourselves into his care, to ask only how we could do it better. The casual observer might have asked if it was appropriate to devote so much time and energy and so many resources to his complex care needs. He showed us this was the wrong question to ask. Instead, he got us to ask ourselves what we would have wanted if he were our own child.

In a way, he held up that mirror he loved so much so we could take a look at ourselves. What do we value? What is our worth? And while his life was certainly a paradox of hidden beauty, of health and sickness, of normalcy and deformity, it was also affirming and validating and inspiring. He loved and he was loved. He was needy but he was also needed. He will be missed and we will grieve his loss. But we will have the nicest memories as solace for our grief.

Thank you Dylan.

Dylan Morgan

December 6, 1993— April 20, 2014