I found myself in foreign territory on what most Hoosiers call “race day” in 2010. The famed annual racing event, the Indianapolis 500, is recognized internationally, but I wasn’t there for motorsports or my need for speed. I was in the city due to a family crisis. I was in Indianapolis at Riley Children’s Hospital, where my newborn nephew was in NICU (neonatal intensive care unit). It was terrifying.
We all held onto hope with white knuckles.
Looking back on the day, it was an absolute blur. We struggled under the extreme weight of waiting. When would the news come? Would everything be ok? No news came. We feared the worst and hoped for the best.
Finally, the news came. It was shocking. My nephew, Kirby, met with significant medical complications. This poor little guy came into this world facing many struggles. He began to have seizures soon after he was born. Kirby also faced a dangerous blood clot that threatened to enter his little newborn heart. We saw his fragility and innocence. We all felt helpless. Our hearts longed for it all to be only a dream from which we would eventually wake. It was a reality.
All I could do was oscillate between helplessness and prayer.
The greatest pastoral schooling doesn’t prepare you for that kind of traumatic event. No theological word or wisdom seemed to be enough.
What I felt most was compassion for my family. My brother and sister in law (Kirby’s parents) were wrenched from a joyous time of new life into a heart-wrenching crisis. Honestly, we were all racing that day, but we weren’t on a racetrack.
We were in a waiting room, while the big race went on in the city. Our souls also raced to find answers.
Where was God? Would Kirby die? Would he ever be ok? Why would God allow something like this to happen? I felt like we were drowning underneath all the unanswered questions. I did not have ready-made answers for them in the midst of their pain. I only remained near and prayed. It was the best I could do at the time. I wish I could say that I could have been more comforting. I wish I could say I was a super pastor that day. But alas, I am still human like the rest of the world.
After wrestling with God for answers, we saw many prayers answered, but not all of them. Thankfully, Kirby began to stabilize and leave the NICU. Kirby would soon leave Riley Hospital in Indianapolis and live at home with his parents. What happened after that? There were more challenges ahead, but thankfully, there were more windows of grace as well. Kirby is now a six year old boy with disabilities. He is not special only because of his condition.
Kirby is special because he is a child of God.
We are thankful for his life. He is also a light in our family. He is cherished. We got to stand on the side of our loved ones that day. We got to be in their corner. That was an incredible privilege. My great lesson from this experience points me back to the incarnational nature of Jesus’ ministry. In our imperfection, we have the chance to be supportive and generous in times of crisis. I am unsure whether what we experienced that day would be termed successful in that sense or not. However, walking beside our family in these trials did not end on race day. I hope they forgive us for any time we might have been unloving on this journey.
All we had in that terrifying moment was our prayers and our presence. The entire experience molded us and left a lifelong impact on our identity. From that time on, we swore that we would try to be as supportive as possible, not only to our family but to anyone God put in our path. We were hoping that at least the little things we did or didn’t do would somehow be a great mercy. In God’s own way, He reaffirmed my lifelong goal, which is to serve those with disabilities. Since my experience hit close to home, I have been moved to become an advocate. I want to be an advocate for families. I want to be an advocate for children who face numerous physical and emotional challenges.
The Lord has formed great compassion in me—one that feels like it ought to be spelled with a capital C.
Brothers and sisters in Christ, all I had was a bit of faith. All I knew was to “mourn with those who mourn.” We can offer hope in love and with a sort of love that takes the long road. I often remind myself that true love isn’t always trying to fix things. We are not heroes; we are Christians. We all wish we could rescue our loved ones from the fires of this world. But sometimes we are like Shadrach, Meshach, and Ebednego. We are to stand in the fire and notice we are not consumed by the flame. Jesus is with us. God is faithful, my friends. We need to know Jesus is our friend, who is committed and loyal to us in the long haul. I’ve learned to stop thinking so much about my shortcomings as I grow in this faith. I have learned to fix my attention on the faithfulness of Jesus.
People in our world need to know God’s faithful love in tangible ways. As the Church, we must greet them as they are. I’ve known disabled people all of my life. I have seen their struggles and high resilience. I have seen an icon of the love of Christ. I have witnessed the power of the Gospel in those whom the world has ignored. Normal is overrated.
Jonas Hamilton is a first-time contributor to Soul Care Collective. Thanks, Jonas!