Human Dignity

Tales from the crib: Looking at life from behind bars

“Mom, will you go with me to visit Jason? He’s spending his eighteenth birthday in the hospital. We’re afraid he’s not going to live much longer.”

Unlike many, I feel at home in hospitals, and my daughter Emily and I both know Jason holds a special place in my heart.  We know him through Emily’s work at a group home for severely handi-capped kids, where she bathes, dresses, feeds and loves Jason. Today, her day off, we will visit him.

His mother and aunt are standing near his crib when we arrive. His mom explains that the shunt in her son’s brain is malfunctioning.  When it works, he’s comfortable; when it malfunctions, he cries or enters a deep sleep.  We witness his extreme pain as he thrashes about and wince at his groans, not sure how to comfort him.

“He loves music,” Emily volunteers.  Softly we serenade the birthday boy with a gentle praise-lullaby and then we make small talk around his bed. I notice that Jason’s body is more the size of an eight-year-old than a teenager. His head and face have severe irregularities. His eyes do not see. He cannot speak, nor does he seem to understand. Developmentally, he’s an infant.

What would most eighteen-year-olds be doing on their birthday? I wonder to myself. Would they be flexing their muscles in front of the mirror or trying on the latest craze in jeans at The Gap?

My thoughts return to the Jason, lying in the crib,  whose life is teetering between the living and the dead. His blind eyes connect deep into my soul. His stubby hands touch my heart and hold me close. I look at the helium balloons purchased moments earlier in the gift shop and I recall how we scurried to find a gift for Jason. The truth of it is—though in some ways I find it hard to believe—Jason himself is the gift.

I look across the bed to his mom and see eighteen years of pain. When I speak, my whispered words surprise both of us, “I see Jesus in the crib.”

Tears that can’t be cried well up in both of us as together we plumb the paradox:  This world applauds the strong, but real strength, God’s strength, is displayed in human weakness.

Looking in the crib

I want to stay, but sense it’s time to go. I navigate my wheelchair through the door and stop in my tracks as I see an empty hospital crib standing in the hall. It immediately transports me to another place and another time.

My first recollection of being alive was when I was lying in a hospital crib identical to the one I now see.  About three years old, I viewed the world through metal rails.

My hospitalization, like Jason’s, was due to a birth defect.  I was born without legs and with a deformed hand.  In shock, the obstetrician announced to my father in the waiting room, “Your daughter is going to live, I am sorry to say.”

Mom waited three days before I was brought to her. A nurse intimated that institutionalization would be merciful. Fortunately, my parents didn’t follow that advice; instead, they took me home and loved me. Dad’s meager minister’s salary wouldn’t begin to cover the medical expenses ahead.  That’s when my parents learned of the charitable work of  Shriners hospital. Numerous surgeries were performed early on to improve my webbed hand. At age ten, I was hospitalized for six months, undergoing amputation of my deformed feet so that I could wear artificial limbs.

Hospital life was a big part of my growing up years. Oodles of the best medical treatment was intermingled with hospital school during the day, and the hit parade on television watched by a ward full of girlfriends on Saturday nights. Somehow the seriousness of our medical needs was camouflaged by the fun times of being together.

At age 17, I graduated from hospital care about the same time I graduated from high school.  I attended the University of Illinois, a Big Ten school, for six years. I received my M.S. degree in Speech Pathology the same month I received my MRS degree and became Mrs. David Squier.

Jason’s hero

We started our family. Occasionally my three daughters would accompany me to the “legman,” my prosthetist. Enroute we’d drive past a Shriner’s Hospital. I’d invariably say: “That’s mama’s hospital. I stayed there when I was a little girl. I had lots of operations and lots of fun.”

“Mom, can we go there?” one of my little girls would ask. They didn’t have the ticket.  Their bodies were intact. But Emily was given a heart of compassion, her ticket to work at a group home for severely disabled kids. Today, she and I visited her special friend in the hospital. Today, my life was deeply blessed by a human being whose doctor is hedging about the value of a shunt replacement. “His life is not worth living,” some believe.

Today, an empty hospital crib transported me from 2004 back to the 1940s, to a time when my family and friends feared my life would not be worth living. They were wrong, and my life mission has been to testify to the unexplainable contribution made by people with disabilities, to tell the world that in some mysterious way, God tucks His Glory in human brokenness.

“Emily, that’s the kind of crib I was in as a little girl in the hospital,” I say, leaving goose bumps of emotion on my skin as we head toward the elevator.

I hardly notice wheeling through the parking lot to our car.  My heart lingers at the empty crib. And suddenly, gently, the connection happens. Seeing Jesus in the crib with Jason, I now see that Jesus was in the crib with me.

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About the author

Judith Ann Squire

Judith Ann Squire is a freelance writer from Portola Valley, CA.