Although I work full-time in ministry leadership, I have learned more about cultivating courage and trusting God through raising my teenage daughter. She has a rare, progressive hearing loss syndrome that manifested at five years old, as well as mild, chronic kidney disease. Any number of risk factors could cause instant and irreversible deafness.
The grief associated with a child being diagnosed with a disability has come in waves, but throughout her life my greatest battle has been with foreboding joy. “Foreboding Joy” is when we fear things that haven’t happened yet or don’t even exist, and it hijacks our ability to live and lead with faith, hope, and love, yoked to the peace and purposes of Christ. Every time I schedule a hearing test, or she develops a fever, my heart races and I visualize a different future than the vision God has given her.
My foreboding joy has only increased as she leaves home to fulfill her dream of studying sports medicine and competing in cross country for a Christian college. She’s focused and prepared for her next season, but I’m still grappling with God on how to release her.
It's not that my daughter hasn’t struggled with her medical condition. She has. There are days where she gets stuck in “Why me?”, but for the most part she lives in “What’s next?” At times, she strains to hear the world around her, and cries out over the injustice of doctor’s appointments at the most inconvenient times. She hates it when other kids learn she has a “problem” and prefers to push herself to reach her potential as an athlete rather than sideline her opportunities because of what might happen.
It’s time to relinquish waiting for the next crisis and take hold of the joy that only comes when we completely surrender...to Christ.
Unlike me, her joy is pure, not foreboding. She has courageously understood God's voice throughout her life as calling her to persevere and live fearlessly. After a lifetime of living with physical challenges, her relationship with Jesus has replaced her frustration with a strong will to compete, coupled with a deep dependency on her faith to finish her race, and no one else's.
Once, while packing for college, she developed a raging kidney infection. Sitting in the emergency room, my mind went to the worst. But when we returned home and I lay awake listening to her breathe next to me, God’s voice was louder than my fears. He reminded me that my time caring for her is over. It’s time to relinquish waiting for the next crisis and take hold of the joy that only comes when we completely surrender our children to Christ. It’s OK to believe the best for her life. Our Lord and Savior has her best interests at heart—and mine.
My experience talking to other parents of children with disabilities is that there is an additional pocket of emptiness when they leave home. The time spent managing medical and emotional care is over. But there is also greater spaciousness to fill with new activities, relationships, and ministry. For now, as I walk with Jesus through the transition, I plan to focus on my own hearing issues, replacing the din of my disquieting fears with God’s Word, and the joy of knowing that He will communicate His desire for the next season of my life.