Sometimes faith looks more like courage than confidence.
I used to wonder if I had a story to tell – if my testimony was valid – because my life had been mostly smooth. No personal illnesses, healthy kids, faithful spouse, and jobs I loved. So when Isla was diagnosed with leukemia, I was fairly calm. It wasn’t that I doubted the severity of her illness. It was just that in those early days, I was confident she would be healed. This would be a defining moment in my faith journey. I would be able to tell others the story of how she had overcome, and many would come to know God’s power because of that testimony.
You see, when I was growing up, our faith tradition didn’t talk a lot about physical healing. We prayed for people who were sick, but we knew that sometimes they didn’t get well. Our life of faith was mostly an exercise in looking forward to heaven, not looking for God’s kingdom to come on earth. But in 2018 we joined a church family that did speak of healing – a lot. New friends knew people personally who had experienced miraculous, physical healing. So as we entered the uncertain world of cancer treatments, we also grew in our certainty that God was going to show up – big time! – for Isla and our family. But there were a couple of stories – moments really – where my assumptions were challenged in the midst of my confidence.
A few months after Isla’s diagnosis, we were able to get away for a Florida visit with friends. We were talking about the prayer reminders on their refrigerator which included Isla and another little girl, one who’d been struggling through heart failure for more than a year. I was following Maci’s story on social media and she wasn’t doing well. When my friend told their (then) 3-year-old that we were Isla’s grandparents, she replied matter-of-factly, “that’s the girl who’s dying.”
It was only a moment of confusion, of course, for a little girl who was trying to keep track of other kids her age who needed prayers for healing. Her mom’s brief embarrassment and my own reassurance were just a smokescreen for the panic that welled up inside, to hear such words spoken out loud in the middle of my confidence.
Surely not, God. Not our family. Not Isla.
In the aftermath of grief, we sometimes forget the “normalcy” of her year of hospital stays. Isla was surrounded by beeping machines, watchful nurses, and connected to wire monitors 24/7. But she was also a delightful (and feisty!) preschool girl who loved stories, songs, and make believe. She learned new things at an exponential rate like every 3-year-old, and kept us in stiches with her antics. For an entire year, she was “at home” both with her caregivers and hospital routines as well as with siblings and parents and the only home she ever knew.
January 1-4, 2020, was one of my hospital stays with Isla. I remember that not long after I arrived, she asked me about Great-grandpa (my dad). Michael and Sawyer had traveled to dad’s funeral the previous Thanksgiving weekend, and Michael later told Isla the news. We talked a little about how each of us were related, and she said she was sad that Great-grandpa had died.
“I miss him,” she said.
“Me too. I’m sorry he couldn’t come visit you in the hospital. He would have liked that.” We talked a little about silly songs and stories, and how much Great-grandpa had loved to laugh.
She paused for a second, thoughtful.
“Someday I will die too,” she said.
Time stops as her words hang heavy in the antiseptic air.
I respond with feigned reassurance that doctors and nurses are working to help her get better, and how usually people don’t die until they are much older. But my heart skips a beat when I say it.
Two days before Isla’s last breath, I was sitting at her bedside, listening to worship music, praying under my breath, listening to her labored breathing with the hum of the oxygen tank. Keeping watch in the holy moments, suspended between times of Isla’s presence and her passing; between “what was” and “what is to come.” Fredrick Buechner and Richard Rohr have both called this “liminal space.”
I picked up my phone to check messages and came across another friend’s reassurance of their faithfulness in prayer. It was one of hundreds of messages received, of course, not particularly unique. But at that moment, there was a palpable presence in the room; a sense that the prayers of the saints across the miles were physically manifest through God’s spirit in that space. Even through tears, I was grateful for the support of family and friends we’d known through our lives, both in college and cross country moves since.
While my faith journey is not finished or settled or complete, these past two years have certainly been a “defining moment.” But not because I could tell others how Isla had overcome leukemia. And not because God’s power was made evident through healing. Instead, I have questions about God’s purpose, even when I sense God’s presence.
I still don’t understand why little girls get leukemia.
I still don’t understand why our family lost Isla.
I still don’t understand what God is doing about 89% of the time.
But I’m still following God anyway.