I sat in the middle of a staff meeting. My phone vibrated with a text from our sitter. Titus had a seizure. I whispered to a co-worker that I needed to go so I didn’t interrupt the entire group. As soon as I hit the back stairs, I sprinted to my car.
I arrived home at the same time as my husband. Seizures weren’t new in our home, but they were worsening. And we finally knew the cause. Our son had been diagnosed with a rare, fatal, genetic disease called Batten just one month before.
“You can’t continue to work, Bek.” My husband’s voice was filled with fear, desperation, and sadness.
“I know.” Tears threatened to spill over. Our family had been hit so hard. This disease that seemingly came out of nowhere was relentless. I’d been trying to manage my ministry position–a calling I’d had for nearly 10 years–and this new role my motherhood journey demanded of me. I couldn’t imagine being any other place but home, but at the same time, this disease felt like it was stealing everything–including my identity.
The career I had been building for nearly a decade halted suddenly and with such finality. This wasn’t a sabbatical, vacation, or sick leave. I was done. And now I sat empty, stripped of the place I had felt empowered to lead and left to navigate the deep dark trenches of rare disease, a place I knew nothing about.
Church became hard to attend. Family events I once led weren’t easy for us to participate in. Having a child with a disability cut us off from so many of the programs and opportunities that had been a regular part of our lives before Batten hit. My anger lashed out at God–Why would you have me invest in a decade of ministry, pouring my heart and soul into serving You in this way, only to be left a heap on the doorstep of the church? Do you see how our new world and the church world cannot exist together?
God was patient, gentle, and kind. He brought healing as we did find a church who surrounded our family in crucial, life-giving ways. And then, when I was ready to see it, He showed me something else. There was indeed a gap between the church and people impacted by disabilities.
And I had a foot on either side of the gap.
New purpose rose up inside me. There was something about our experience that really mattered in this space. As my eyes were opened to the vast population of the disability community and their loved ones who didn’t know Jesus and His love, I realized that God was calling me to something better–He was calling me to help bridge a gap.
Most days I still feel ill-equipped to move forward into this calling. And wouldn’t you know it, God didn’t reveal all the steps to me at once. It’s in this space where I wrestle, wonder, dream, take the next right step, freeze, stall, jump and belly flop.
But what I can confidently say is this–I have found His love showered on me in my deepest, darkest places. There, I found my identity as the daughter of the Most High King, and out of that place, His great love offering pours out of me and into others in an unexpected, beautiful way.
About Bekah:
It’s my mission to help you find joy, belonging, and hope in Jesus. I am passionate about bridging the gap between churches and people impacted by disabilities. I’m a mom to two boys, Titus who is with Jesus, and Ely, who fights the same rare disease as his brother. I am also a proud coach’s wife and still gets nervous, proud and teary-eyed watching my husband’s athletes run the 4×400 relay, even after 16 seasons.
Connect with Bekah:
IG: @bekahsbowman
IG: @RoomForMoreMinistry
FB: @Team4TitusEly
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