My Disabled Son Is the Image of God

As a pastor, I’ve wrestled with the theological implications of my child’s disability.

When my nine-year-old son Benji was an infant, we were in and out of hospitals for the first few months of his life. He suffered from focal motor seizures and received innumerable pokes and prods to figure out the right medication and dosage to get them under control.

Then, one grey and rainy November afternoon—amid countless sleepless nights, doctor appointments, and learning how to be parents for the first time—we received a call to set up an appointment with a geneticist about our son’s newly discovered diagnosis: 1p36 deletion syndrome. We were told not to Google anything, but of course we Googled everything.

Before the appointment, my wife and I prepared several big questions, including: Is this hereditary? Is this degenerative? What else do we need to know about this syndrome?

On the day of the appointment, we arrived early and waited expectantly to satisfy our curious and concerned minds. The specialist was behind and arrived late, even by doctors’ standards. He came into the small office, still talking on the phone. A few moments passed while he finished his conversation. Then he hung up, saying Goodbye and then Hello to us in what felt like the same breath. He tossed his phone and a folder on the table before slumping into the chair.

After we asked our questions, he flipped open the folder to glance at the papers before closing it quickly. A faint buzzing noise prompted him to reengage his phone and reply with a text. Then his phone hit the table for the second time in less than a minute. He straightened up and leaned forward slightly. After glancing at us, at our infant son, and then back to us, he said:

This is your life now. You just need to love him as he is. The information in this folder …

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