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When my phone rang, I didn’t hesitate to answer, even though it meant leaving my five-year-old son and two-year-old daughter unsupervised in the sunroom with an overflowing goody bag of Easter candy. I assumed it was my mom calling to ask something about the holiday. Little did I know, I was about to receive news that would radically alter our lives and fill me with an unshakable fear.
A few weeks earlier, a pediatric neurologist had suggested that Lizzy undergo an MRI. He wasn’t one to routinely recommend such tests for young children, but he expressed concern over the size of her head and the peculiar shape of her eyes. I was already anxious about her significant speech delays that prompted the appointment. While a part of me found solace in the fact that we weren’t alone in our worries, I desperately clung to the hope that everything would turn out fine.
That hope was shattered when the doctor informed me that Lizzy’s MRI revealed extensive damage to the white matter of her brain. He mentioned serious and potentially life-threatening conditions, and the phrase “some of these are the worst of the worst” is forever etched in my memory. My body felt heavy with the weight of his words, and the realization that my instincts had been correct offered little comfort.
In those moments, I fantasized about whisking my family away to a remote island, isolating ourselves from the harsh realities of the world. I doubted my strength to face this daunting challenge. After all, I was a theater major and a former executive assistant—how could I possibly handle something of this magnitude?
With tears streaming down my face, I tried calling my partner, Joe, but when I couldn’t reach him, I called my mom instead. Meanwhile, my children were still happily playing in the sunroom, blissfully unaware of the storm brewing in my heart.
Eventually, I decided to check on them. To my amusement, they were covered in chocolate, candy wrappers strewn across the floor, but they were smiling and carefree. I couldn’t help but laugh. In that moment, I realized that I had to face this situation head-on; I had no other choice. Life’s daily demands didn’t pause just because my daughter had a brain disorder.
It’s these everyday moments that have helped me navigate the challenges over the past 17 years. Thankfully, many of the worst conditions the doctor mentioned have been ruled out. However, Lizzy still faces significant issues and will always require our support. Now at 19, she often resembles a four-year-old in her understanding of the world, yet she also shares interests like heavy metal music and the occasional teenage flair for independence.
I won’t pretend it’s been an easy journey—it hasn’t. But through it all, Lizzy’s spirit and radiant smile give me strength. My love for her has taught me that I’m far more resilient than I ever imagined. I strive to find joy in the present moment and, just like that day with the candy, I laugh—often.
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