What started as a silly game became a lifeline amid waves of sickness. We stood outside the chapel and waited for the choir to stand up so my daughters could carry candles down the aisle. My 8-year-old approached me, studied my stomach, and planted three kisses on my belly. Our friend Sammy noticed and raised her eyebrows. I knew what she was thinking.
”No, I’m not pregnant,” I smiled.
My daughter motioned for me to bend down so she could whisper in my ear. “Your tummy’s hurting, isn’t it, Mom?” she asked.
“I can tell.”
I battle chronic gastrointestinal disorders with flare-ups that often appear at inopportune times. My family and I are so accustomed to them at this point that there’s no need for me to verbalize my discouragement anymore. I’ve tried diets, spent a small fortune on supplements and medicine, and altered other aspects of my lifestyle, yet the “IBS tide” still isn’t turning.
But my gastrointestinal distress is just one of the many series of health-related waves that have attempted to drown my family under the weight of their intensity and frequency. I liken it to the phenomenon found in the ocean following an earthquake. As Earth’s tectonic plates converge and dip, the energy from the earthquake can cause the ocean floor to rise or fall, as does the water above it. Multiple waves rush toward shore and can go on for hours.
The question occurred to me a few months back: Would I rather endure one giant wave that swallows everything up in one swoop or a steady succession of smaller waves that eventually overcome the will to remain standing?
At least with the former, there’s a sense of completion and finality. Rebuilding can start to take place almost immediately afterward. But the unrelenting waves carry with them an unknown end time. I think that’s what makes them more challenging to deal with and accept.
Navigating My Daughter’s Autoimmune Disorder
The sequence of swells started again late last year when we discovered that our 8-year-old has Graves’ Disease—an autoimmune disorder of the thyroid. Since then, we’ve consulted with cardiologists, endocrinologists, and both functional and conventional medicine to understand what’s happening in her body. I’m grateful for this village of healthcare professionals, but they still haven’t discovered why she isn’t growing.
The reality is that it’s been easier for me to manage my frustrations with my own health journey than to watch my daughter traverse hers. That’s the case for most parents, I’m sure. The onslaught of waves takes on a newfound level of force when they attempt to sweep out the feet of your child. After a while, the continual knockdown submerges the physical, mental, emotional, and spiritual health of a person, especially when it’s happening to someone else you dearly love.
Eventually, joy begins to erode.
Gratitude in the Hardship
Later that night, as I pulled the covers up under her chin, she asked, “Mom, why is my heart still beating so fast?” Before I could answer, she fired off more questions, one right after the other:
Will I always have to take medicine?
Why isn’t my thyroid working right?
Am I always going to be this small?
Some girls at school call me “midget” and won’t let me sit with them at lunch.
My heart sank when I heard her utter the last part. As I was about to respond, she sat up abruptly and announced she wanted to be a singer when she grew up.
She pointed at my stomach. “I think I know what would make it feel better.”
“Oh yeah,” I asked, “what’s that?”
“If I sing. To your stomach.” She giggled.
It was late, but I complied. I could tell she was in a silly mood, but given the fact that we’ve had more conversations in the last year about our bodies, different organs, and how we’re trying to get everything to work together harmoniously, I told her to give it a try.
She instructed me to lie down and get cozy. She placed her hands on my stomach, and started making up lyrics, all directed at my abdomen.
“Tummy, Tummy, Tummy… with your gurgling sounds and bathroom trips. Stop being so mean…” The impromptu lyrics caused us to laugh, and then her voice changed. “Oh, Tummy, you help my mom digest food. You feed her body. You give her energy, and you’re doing such a good job. Thank you, Tummy, for loving my mommy. Thank you, God, for making this tummy.”
Tears welled up in my eyes as I listened to her angelic voice and words of spontaneous gratitude and thanks. Here was my daughter, who is navigating her own health struggles yet still seems to swim in joy despite this. Through all the testing, blood draws, waiting room visits, questions, and unknowns, never once have I heard her get upset about her condition. She’s weathered through it all without missing a beat.
“Okay, your turn. Now sing to me,” she demanded.
I put my hand on her thyroid as I sang unscripted lyrics in an offbeat tone. “Thank you, Thyroid, for all you do for my daughter’s body. For doing such hard work to keep her comfortable. For producing hormones, helping her to grow and be healthy. You’re working so hard, and we see that. Thank you, God, for holding her hand through all this.”
Afterward, she told me her body felt calmer, and I agreed. We laughed and held each other as I kissed her goodnight.
The following night, she sang over my stomach, and I sang over her thyroid again. It became our little nighttime ritual every night that week. The lyrics changed but ended with the same theme: thanking our bodies for the hard work they were doing.
Inspired By Her Strength
Who knows when or how these series of health-related waves will recede or if they’ll forever be on the horizon. Yet, I’ve learned a few things about joy as I walk alongside her.
I don’t feel joy in the fact that my daughter’s autoimmune disorder has the potential to affect her for the rest of her life—there are more serious ramifications and subsequent conditions she may one day face.
But there is joy in watching the unique ways she’s choosing to process, navigate, and accept what is before her right now. She’s not swayed by the waves nor focused on when they’ll cease, but on discovering the lifelines thrown to her in the moment. It’s in the searching for, finding, and grabbing hold of these daily lifelines where joy resides.
We can be easily blindsided by unexpected news, especially when it’s a medical diagnosis. Here’s how to determine your next steps in a new season: Your World Just Turned Upside Down—What Now? with Marlys Johnson Lawry – 197