Have you ever watched a storm approach? You can see it coming. There is time to prepare. There is often a calm, and then it hits with all its fury.
Several years ago, my oldest son, Ben, and I helped out after a tornado. We emptied a rain-soaked basement; the rest of the house had blown away. Risking his life, the homeowner had recorded video of the approaching storm, ducking to safety when the funnel cloud was nearly on top of him. He saw the storm coming. All the preparation in the world couldn’t save his home.
When Ben, who has a genetic deletion called Williams Syndrome, turned 22, he celebrated his last day of school, and walked away from a lifetime of social, emotional, and intellectual support. He went instantaneously from daily routine and structure to days spent entirely with Dad. Although we knew the day was approaching, there seemed to be little we could do to avoid its wrath. Generally, his days since have been boring, unprogrammed, and lonely. COVID-19 has exacerbated the isolation.
We’re still in a holding pattern. Illinois is notoriously bad at providing adult services. Finally, after four years, Ben has received approval for an adult Medicaid service waiver. We’re in the process of determining the most enriching life setting for Ben moving forward. Of course, each step takes weeks, and the weeks become months.
Some days I’m hard on myself. Why didn’t we do a better job preparing? Should we have been more tenacious advocates? Other parents did x, y, or z: Why haven’t we? Have we sacrificed enough to support Ben’s future?
Actually, I pretty much put my career on hold, although I didn’t stop working. I’ve been blessed with a flexible and understanding employer, and work that I’m competent at. But it’s not what I envisioned for my life, and it’s not adequate to secure our future. On a daily basis I wrestle with Jesus’ admonition to lay down one’s life for a friend. Am I resisting the obvious call to lay down my life in order to provide a life for Ben?
I’m also exhausted. While Ben is physically capable and independent, his emotional and intellectual makeup is …. uneven and persistent. A friend recently observed that we’re dealing with a 10-year-old. He’s right, except for when we’re dealing with a 5-year-old or a 16-or-25-year-old. Negotiating the moment-by-moment needs of an emotionally and intellectually randomized young adult wears me out.
Ben is beloved by pretty much everyone he meets. His unfiltered personality is eager for new relationships. He also has no boundaries. Establishing boundaries for his own safety and for the sanity of others is difficult and impermanent.
We’re lucky; Ben has many positive and endearing qualities. But that good fortune does not negate our struggle to find the right path to maximum independence with necessary support.
Thankfully, our journey has been full of supportive people and welcoming churches. They recognize that there are challenges, but few fully understand the toll it takes on a family. Ben is a dominant force, demanding time, attention, and resources that our other kids just don’t.
I love Ben and the joy he brings to our life. But I also long for him to have his life, organized and nurtured for his empowerment, joy, and success. After all, isn’t that what we all need and want?
Jonathan Shively lives in search of precious moments which defy the atrophy of the world. Father to young adults Benjamin, Noah, and Lydia, and spouse of Kim, his faith in Jesus is rooted in the anabaptist and pietist soil of the Church of the Brethren. He is Director of Advancement for Pinecrest Community and founder and principal of ArtistryLeads, a leadership and organizational development consultancy. Jonathan enjoys playing the piano and guitar, singing, and composing music, cooking, gardening, working with his hands, reading, volunteering, and Chicago sports teams. He and his family live in Elgin, Illinois where they are active participants in the Highland Avenue Church of the Brethren.