We Don’t Need Eyes to See
We Don’t Need Eyes to See
Our last day of clinic this week began with a very special 5 year old. Fernando is a bright, articulate, innovative, fearless young man, who told nurse Kristen in triage that he was going to be a doctor when he grows up. He also happens to be blind. Fernando was born prematurely and the oxygen that he needed after birth to keep him alive severely damaged his eyes. I had Mila in the peds room with me that morning. Her mom is a NICU nurse. I told Mila that her mother would know all about retinopathy of prematurity. Oxygen damages the fragile retina in babies. It is a well-known risk for premies, and with appropriate, early intervention with pediatric ophthalmologist usually vision can be spared. But Fernando wasn’t offered any intervention until it was far too late. His mother shared with us through tears her early journey of becoming a mother to a young boy who will never see. She is a remarkable advocate for him. She takes the 5 hour journey to Guatemala City once a month to see specialists and has found a school for the blind in the city that he attends virtually. The burden of his disability weighs heavily on her. But it really doesn’t seem to weigh at all on Fernando. Kids who have such a major deficit from birth or a young age often compensate very well. When Fernando entered the pediatric room he immediately went about exploring the room with his hands. He was knocking things off the table and bumping up against the people in the room. He had no problems climbing up on to the exam table and was a shining star for his exam. He really, really loved hearing the birds in his ears - “pajaritos!”
As we were wrapping up with his visit and walking him over to see Dr Deb in PT so she could work with him and his mom on some therapy skills visually impaired people need, I found myself thinking of Stevie Wonder and my husband. Chris has been a lifelong admirer of Stevie Wonder, he can still tell you about his memory of his older brother Johnny bringing home the album “Songs in the Key of Life.” Chris has written extensively on Stevie’s music and actually has an entire chapter of his book The Artist Alive on Stevie in the context of theology. Stevie’s early life story is not unlike Fernando’s. He was born prematurely with underdeveloped optic nerves and also got retinopathy of prematurity from oxygen in the NICU. His mom took him to doctors and faith healers as a young boy, determined to find a way to preserve his vision. Stevie remembers with disdain many episodes of strangers digging around in his eyes. Finally he told his mom, “Maybe God doesn’t mean for me to see. Maybe God meant for me to do, to be something else.”
By the time Stevie was 12 he had burst onto the music scene and he took Motown by storm. His last name was changed to Wonder because veteran musicians who saw him called him the 8th Wonder of the World.
If you are unfamiliar with the album “Songs in the Key of Life” you probably will recognize some song titles - “Isn’t She Lovely,” “Sir Duke,” and “Joy Inside My Tears.”
He is an incredible song writer. Perhaps the most poignant song on the album, and honestly one so pertinent to a community that is built on a landfill, is “Village Ghetto Land.” Chris has written extensively about this song. In one article, titled “‘The Street is for Celebration’: Racial Consciousness and the Eclipse of Childhood in America’s Cities,”Chris writes about how the song “Village Ghetto Land,” juxtaposes disturbing images of “life the way it is” in the city over the serene instrumentation of a chamber quartet:
Would you like to go with me/Down my dead end street
Would you like to come with me/To Village Ghetto Land?…
Children play with rusted cars/Sores cover their hands
Politicians laugh and drink/Drunk to all demands
Having briefly visited the landfill just before clinic the same morning we all met Fernando, this song takes on real world significance.
In my experience with children who are born with a major disability or who have one thrust upon them at a young age, they often adjust - sometimes they adjust even better than their parents. Kids tend to figure things out. Fernando was one of those kids. His mom, understandably, is still trying to figure things out. She knows what he is missing, and what challenges lie ahead for him. He really doesn’t. Young Stevie Wonder didn’t either. Both of their mothers were in a time of mourning a loss their children felt in such a different way. I look forward to following along in Fernando’s life to see what God meant for him to be. He clearly did not need eyes to see that day in clinic.
Lauri Pramuk, MD