My daughter was a spark of energy from the moment she entered this world. A delightful seven-pound bundle of joy, she possessed captivating eyes through which we both viewed life’s wonders. Fearless, or perhaps simply blissfully unaware, she embraced life wholeheartedly. Her two stitches before her first birthday were testament to her boldness. She loved fiercely, and in return, she was adored by everyone around her.
As my firstborn, I celebrated her milestones with enthusiasm. Her first words, teeth, and steps were moments of sheer joy. From her initial birthday bash to her first gymnastics class and the excitement of starting school, every first was a cherished memory. Each achievement was accompanied by cheers, family gatherings, and countless photos that captured those beautiful moments—memories now preserved in my mind.
These milestones were what every parent anticipates, the beginnings of a journey we believed would last a lifetime. Tragically, a chronic illness intervened, stealing those future moments from us.
While I can vividly recall all of her “firsts,” there is one last memory that haunts me—the day of her last “good day.” I wish I had taken the time to truly savor it.
That day was exhausting. She enjoyed an extended bath, nearly forgot her homework until the last minute, and chose the lengthiest bedtime story imaginable. I was worn out, and in my haste, I rushed through the tale, barely engaging with her. I thought we would have many more evenings like that. I skipped words and even pages, oblivious to the precious time slipping through my fingers. Since that night, I have longed for those moments back.
The next day, she woke up in a world transformed by autoimmune encephalitis. Her body, once vibrant, was now attacking her brain. The antibodies that should have fought infection were instead waging war on her nervous system. Doctors described her condition as her brain being “on fire.” A girl who had been performing back handsprings just hours before was suddenly incapacitated. The joys of gymnastics and softball were replaced by hospital visits, physical therapy, and the sounds of her pain and fear. The trivial struggles of bedtime and homework that had once driven me to distraction paled next to the life-or-death battle we were now facing.
In the blink of an eye, everything changed.
Soon, there were new firsts—the first seizure, the first hallucination, the first ambulance ride. Each of these experiences etched themselves deeply in my memory, devoid of the celebration typically associated with such milestones. They were shadowed by silence, the kind that left me without the support I desperately needed.
These painful firsts, though cruel, were necessary preparations for even graver moments—those instances when I prayed she would make it to the hospital or grappled with the terrifying realization that she might never return home. These are the isolating experiences that illness brings, the ones that no one shares because they are too enormous and too heavy to celebrate.
Gracie, my daughter, is a warrior. I am proud to say that. She experiences both good and bad days, and I can articulate that much. But the depths of her struggles on the tough days are a quieter battle, one that I often feel compelled to shield her from, or perhaps myself. Thankfully, she is stabilizing now. After her first round of chemotherapy, she spends more days at home than in the hospital.
Once again, we are encountering new firsts—her first individualized education plan (IEP), her first partial day back at school, and her initiation into an inclusive sports league. I have celebrated these milestones because they are significant, moments I once feared we might never experience. Yet, I find myself celebrating these achievements in solitude, for they are not the kind of firsts that are easily explained.
What makes sharing this difficult is the knowledge that if my friends had known how much I needed them, they would have rallied around me. However, navigating illness and the complexities of parenting a child with special needs often feels like an isolated journey. There is no manual for this, no guide to prepare you for the unexpected.
There are firsts I never imagined, and I would never wish them upon another mother. But when I encounter someone facing a medical crisis, I speak up. Even if it’s just to say, “I’m here,” I understand how frightening illness can be and that no one should navigate it alone.
Parenting, even in the best of circumstances, requires a village—especially when illness is involved. It demands a community of support, shared resources, and compassionate shoulders to lean on. To the mothers who need support, reach out. You are not alone; there are others who share your struggles.
We are here, waiting.
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