I didn’t grow up dreaming of motherhood. I wasn’t the kid who collected baby dolls. And though I fondly remember playing house with my siblings, I never wanted to be the mom. When my friends would daydream about their future families and what their babies’ names would be, all I could contribute to the conversation was “Wrigley,” the name I’d picked out for a dog. It wasn’t that I didn’t like kids. In fact, in high school, I worked at a childcare and loved my job. I just couldn’t see the appeal of being responsible for another life 24/7/365.
I had a plan for my life. And raising babies simply wasn’t a part of it.
Then came two pink lines to change it all.
Nine months later, I held my heart in my hands. She was 7 pounds, 2 ounces and had the wisest eyes I’d ever seen. Holding her in my arms, I was moved to tears. I told her I didn’t know what I was doing. That this wasn’t my plan. Intently she stared back. Feeling helpless, I told her we’d “figure it out, together.” Unwavering, her bright eyes stayed locked on mine.
In hindsight, I think she intrinsically knew she was greater than my plans.
I didn’t know it yet, but that spring, my life changed with the seasons.
Gracie was a sweet, even-tempered baby. She took my selfishness and sleep, instilled and tested patience, and motivated me to be my best self. Quickly she grew from a bright-eyed baby to a confident and creative child. Life through her eyes was beautiful and she made sure everyone around her stopped to appreciate it, too.
Soon, my internal narrative changed. Gracie didn’t change my plans—she was THE plan. And watching her grow became my greatest adventure.
That creative and confident child became a straight-A student. She sought volunteer opportunities at the animal shelter, picked up litter at every turn, and excelled at the many sports she tried. She was passionate about social justice and dreamed of being a judge or a dolphin trainer. She grew into her own person but never stopped exuding kindness, curiosity, and joy.
Then came her first seizure, thrusting us into the world of chronic illness and again uprooting everything I knew to be true.
Things went from bad to worse, quickly. Within a year, I’d lose count of the blood draws and ambulance rides she experienced and the co-pays we paid. We traveled from coast to coast, hoping someone could give us back our girl. The answers would come but not before suffering and brain damage.
And again, I found myself crying, “This isn’t the plan!” Only this time, to God.
Why would my girl, a child who had so much to offer the world be made to live through this? Her life was just starting. And now? Now, her dreams were halted before any traction could be given to them. And it wasn’t fair. I was mad. Mad for her, and mad at the loss I was witnessing.
Gracie, though. She never was. If she knew what had been taken from her, she never let on. If she recognized her path was harder than her peers, she didn’t complain. Instead, she rose each day with a smile, finding good wherever she was.
For two years, Gracie spent as much time at the hospital as she did at home. Had she turned angry and bitter for the experience, nobody would have blamed her. But she didn’t. Instead, she cooperated with doctors, did as her therapists asked, and even made cupcakes (while still in ICU) to thank them for helping her. Gracie’s spirit was unbreakable, and that energy was contagious. Contagious to the team who committed to fighting for her and contagious to those who supported her.
And soon, with her energy around me, my own anger dissipated.
I am not as selfless as her, and I still experienced hurt and grief, but as my anger subsided, I could appreciate how lucky I was to still be watching my baby girl grow into a little lady.
Life, as we were living it, wasn’t my plan, or even my revised plan. And it clearly wasn’t hers. But for reasons I didn’t—and probably never will—understand, it was the plan, and she surrendered to that long before me.
Once Gracie received a diagnosis and treatment, her quality of life improved. But the day I stopped holding on to what I wanted for her and let her just be, she soared. Recovery wasn’t a possibility, and life before—as she knew it—was gone, but periods of remission were possible, and she was committed to making the most of them.
Gracie reinvented herself, as she was able. She exchanged her love of sports for an appreciation of art, even succeeding in opening an Etsy shop. Despite the learning disabilities she had acquired and an IEP goal to “recognize seven letters by the end of the fifth grade,” she made 7th-grade honor roll . . . for mainstream classes.
Gracie bravely became her own advocate, educating others about her disease, service dog laws, and the power of kindness.
Gracie’s status varies day to day. Sometimes she can talk, other times expressive aphasia robs her of verbal communication. When this happens, Gracie’s resilience shines. She uses an iPad, known as an Augmentative and Alternative Communication Device (AAC) to communicate. It’s her voice when her own one fails her, and she uses it confidently.
Gracie’s mobility varies, too. It’s one of the crueler parts of her disease. Sometimes her legs can support her, others—sometimes for months on end—they can bear no weight. During these times she transitions to a wheelchair, never with a complaint. I remember one summer day, I found her outside with her friends, coloring the wheels of her wheelchair. Curiously, I asked her why. And with a sly giggle, she showed me, drawing circles on the ground with it as she spun around the court.
Gracie sees the world through a lens of magic few are blessed enough to. She finds good everywhere—and good finds her.
Her ability to adapt keeps her part of the world around her, but she never stops striving for more. I’ve watched her take her “first steps” more times than I can count, and I’ve celebrated her “first words” time and time again, too. And never has the experience been any less magical.
I wouldn’t wish this journey for any parent or this experience for any child, but I wouldn’t trade my girl for anything either.
A curious piece to Gracie’s health is a mitochondrial condition that has yet to be named. Though it is treated symptomatically, her body is a prisoner to it. She can only sustain so much activity before she crashes. The challenge is that level of activity varies, so it can’t always be predicted.
A mitochondrial crash is akin to hibernation. Her body just stops working to conserve energy. Sometimes she’ll seize, other times she’ll sleep for days on end and vital organs like her heart and liver won’t function right, creating high alert and fear. During this time she won’t communicate with us at all, and it’s brutal. But always at the end of it, she wakes singing. And it’s the most beautiful sound.
I’ve come to know her song will come. But still, with every crash, I panic and pray.
And as I pray, I wonder what for? Because if God has a plan and it differs from mine, what value do my words hold? And I’ve never been able to answer that. But simply releasing my concerns to Him is enough to remind me there is a plan.
Life is crazy. It’s a mess of good and bad. And the only trick I’ve found to getting through it is to look for the magic that is ever-present and embrace it. People who know my family, who have watched my girl suffer, ask how we can still believe. And I counter. How could we not? She’s come against impossible things but conquered them.
And what she’s taught me in the process is believing in God doesn’t mean God will take the problems, but rather He will bring her and me through them. And in time, reveal the only plan that matters.