My grandson Silas was born with spina bifida, a genetic condition that physically limits — with paralysis that necessitates a wheelchair, blocked cranial fluids that necessitate a shunt, organ dysfunctions that require great daily effort for small tasks. He needs care.
Who doesn’t? I do, and Silas is my own most dear and tender caregiver.
We learned of Silas’s condition from an ultrasound at week 18 of gestation. I was interviewing with a pastor nominating committee in California at the very moment my wife received a call from my daughter Sada. My daughter, who was called by God to change the world in ways that I was not, would now have limits as a caregiver.
Sada lives in California, so Lois and I, within driving distance, were able to see her the next day. She and her husband, Matt, asked if we could move closer to them to help. We could. The PNC called. Lois – masterful with our son Jason, who also has spina bifida – retired. Before Silas was born, we moved 2,000 miles closer.
Before his birth, Sada told me his name would be Silas, like the biblical Silas of Acts in Chapters 16 and 17, for four reasons:
- Though his legs are in chains, he will sing hymns to God in the night.
- With one foot in privilege and one foot in the margins, he would be an ambassador.
- When offered an easy release, he will have guts enough to call for justice.
- Though challenged by the crowd, he will have a willing advocate in a man named Jason.
She knew that names mean things in the Bible and in our family. Her name, Sada, is an anglicized form of the Hebrew word tzedek, meaning “justice.” Since her youth, and now in her work as an attorney, Presbyterian Church (U.S.A.) ruling elder, global relief worker and political science university faculty, justice has been her passion.
She is wise, brave and adamant that Silas’s gifts are rarer than his disability — and that spina bifida is not the most important, or even the most interesting, thing about Silas.
Quietly, while we were alone one day in his first year of life, Sada asked me to hold her accountable to the highest standards in emotionally caring for Silas. I heard in that humbling and honoring request a challenge to hold myself to the same standards. Silas and I became best friends. We refer to each other as “brother.”
Silas and I are not so alike; it’s more that we just like each other. Other than his mother, maybe no one has been easier for me to be with. We share whatever life we can. He loves all things mechanical, especially trains and planes. He loves to teach and inspire me. He wonders about tracks and runways; I wander in late antiquity. Together we read Augustine’s The City of God in Latin and English, one book a year; he humors me with patience and engagement. We do not play video games together anymore, as his skill is so far above mine, and both of us have room to grow in sportsmanship.
This boy loves Jesus. This boy has no doubts that Jesus loves him. I’d like to think my unashamed love for him helps this love, but of course that is a shared glory — shared with his other grandparents, who are pastor and schoolteacher, also.
In God’s providence, we have been given to each other for each other. We look at each other as if into a mirror. I see in the mirror his weak body that, with much care, can be helped to be more whole. As he grows wiser now, I think Silas sees my weak soul that, with much care, can be helped to be more whole as well.
This fall, Silas entered high school. He sings hymns to God that are as sweet and sincere as any I’ve heard. He loves it when the world is righted, and he has the guts to call for it. His uncle Jason, now in his 50s, shows the way forward. Augustine – from Book 15, which we read this year – teaches both of us about the progress of the city of God. We tend to believe it. We are making progress. God has given us into each other’s care.
