My daughter burst into the world like a firework—seven pounds of pure joy, with sparkling eyes that reflected a curious spirit. She was fearless, or perhaps just blissfully unaware of the dangers surrounding her. Proof of her adventurous nature came early, with two sets of stitches by her first birthday. She loved wholeheartedly, and in return, she was cherished by everyone who knew her.
As my first child, every milestone was a cause for celebration. Her first word, first tooth, first steps—each was a cherished moment. I documented her first birthday, first gymnastics class, and first day at school. There were awards ceremonies, t-ball games, and cheerleading competitions, all captured in photos that would forever remind me of those joyful times.
These are the milestones every parent anticipates, and I believed we would enjoy countless more together. But chronic illness changed everything for us.
While I can vividly recall those precious “firsts,” there’s another memory that stands out—the memory of her last “good day.” I find myself wishing I had taken the time to truly appreciate that day, rather than rushing through it.
It had been a long day, filled with a lengthy bath, last-minute homework, and a bedtime story that seemed to stretch on forever. I was exhausted and hurried through the tale, barely glancing at her as she absorbed the words. I thought there would be many more evenings just like it. I skipped pages and even words, hoping she wouldn’t notice. But every day since, I have regretted those moments. That was the last day before she awoke in a different reality.
A world defined by autoimmune encephalitis—a condition where her own body began attacking her brain. Instead of fighting off infections, her antibodies turned against her nervous system. Doctors described her condition as her brain being “on fire.” Overnight, my vibrant daughter, who had just been doing back handsprings, found herself unable to move. The laughter that once filled our home was replaced by cries of pain and fear, as gymnastics and softball gave way to hospital stays and physical therapy. The struggles over homework and bedtime that had once frustrated me now seemed trivial compared to the battle for her life.
With this sudden shift came new firsts—her first seizure, first hallucination, first ambulance ride, and countless medical procedures. These last “firsts” lacked the celebration and joy typically associated with such milestones. They were marked by silence, highlighting the loneliness that accompanies chronic illness. I faced these challenges without the support I desperately needed, both for her sake and my own.
Yet, amid this turmoil, Gracie has remained a warrior. She experiences good days and bad, and while I can articulate that, the severity of her struggles often remains unspoken. Thankfully, she has stabilized following her first round of chemotherapy and now spends more time at home than in the hospital.
Once again, we are encountering new firsts—her first Individualized Education Program (IEP), her first partial day back at school, and her first experience in an inclusive sports league. I celebrated these moments, knowing they were significant, but I often found myself celebrating alone, as these aren’t the kinds of experiences that are easily explained to others.
The hardest part of sharing this is acknowledging that if my friends had known how desperately I needed them, they would have been there for me. Illness doesn’t come with a manual, nor does the journey of parenting a child with special needs. No one expects to navigate these challenges, and it can feel isolating.
If I encounter another mom facing a medical crisis, I make it a point to reach out, even if it’s just to say, “I’m here.” Because I understand that illness is daunting and should never be faced alone. Parenthood, under any circumstances, requires a village—a community to lean on during both the joyful and challenging days. But parenting a child with a chronic illness truly demands a strong support system.
To all the mothers who find themselves needing a village, don’t hesitate to reach out. There are others who feel the same way, and together we can create a community of support.
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In summary, I deeply regret not fully appreciating my daughter’s last “good day” before illness transformed our lives. The journey of parenthood, especially amidst health challenges, is complex and requires a supportive community. We must all be there for one another, as we navigate the trials and triumphs of raising children.