One of my earliest memories of motherhood is the nurse gently guiding my newborn daughter’s tiny mouth to my chest, both of us encouraging her to latch for breastfeeding. It felt anything but instinctive; in fact, it was painful. Yet, for this little girl I had just met, I would have moved mountains. So, I persevered until we figured it out—not because it was easy, but because I believed it was what was best. In that moment, I truly grasped the fierce love of a mother.
I returned to school when my daughter was just five days old and resumed work shortly before she turned two weeks. It wasn’t a matter of desire; it was a necessity to provide for us. Friends and family, with good intentions, often remarked, “I could never leave her,” but for me, it was not a choice. It was simply what needed to be done.
I breastfed her for two years, exclusively at first. I attempted formula once, only to discover she had a severe allergy. I could have tried other brands, but the risk didn’t seem worth it. Instead, I woke up to feed her twice each night and pumped two additional times. For the entirety of that first year, I rarely slept more than two hours in a row. It was what she needed from me. Yet again, well-meaning friends and family would say, “I could never do that.” I began to realize that those comments, while likely intended as support, felt isolating.
I was just like them—a mother doing my best.
My daughter enjoyed a typical and healthy childhood. Until suddenly, she didn’t. That’s how life often goes; we rarely expect a metaphorical Mack truck to come barreling through. But for us, it was strep throat, and it hit hard. Initially, it made her physically ill, but soon it began affecting her brain. In an instant, the little girl I knew began to slip away.
Suddenly, there were gaps in her memory. She became anxious, her body trembled, and she developed an uncharacteristic claustrophobia. She couldn’t bear to be in cars, often trying to throw herself out, even when they were moving. The child who once insisted on matching outfits would now only wear athletic clothing. My sweet, agreeable daughter had become defiant, and what used to come easily in school became impossible. Everything felt nonsensical, and my heart shattered for her.
Friends and family looked on in disbelief, shaking their heads and saying, “I couldn’t handle that.” Again, they meant well, but I sensed it was more a relief that it was us and not them.
Her symptoms matched something called PANDAS—a condition marked by behavioral changes and odd movements following strep. Though recognized in the medical community, it remains a controversial diagnosis. Finding a doctor who could help was like searching for a needle in a haystack, and as we sought treatment, she continued to deteriorate.
Amidst frantic phone calls and endless online searches, we located a physician in Cleveland who believed he could help but warned it would be expensive. He explained that while there was a code for insurance if one were, say, “sucked into the engine of a plane,” there was none for our situation. It wasn’t fraud; it was simply the harsh reality of this diagnosis.
Ultimately, the cost became irrelevant. Our daughter’s condition was worsening too quickly for him to intervene. One evening, while watching Trolls together, she began seizing. What followed were hallucinations, and for the first time, I felt utterly helpless as an ambulance took us away.
Surrounded by friends and family, they offered assistance with my other children, brought coffee for me and balloons for her, and whispered, “You’re so strong.” But it wasn’t strength that propelled me forward; it was love. Their words, though well-meaning, minimized my pain. I wasn’t acting from a place of courage; I was simply being a mother. And despite all the love in my heart, it was breaking.
It took nearly another year to find help—a year filled with countless needles, hospital stays, cross-country trips to specialists, and three harrowing ambulance rides, praying she would emerge alive. With each visit, fewer people came to see us. To me, that was only natural; while our lives stood still, theirs moved on. Still, those closest to us would say, “I couldn’t live through what you have,” or “Thank goodness she has you.”
Throughout that year, I learned how to flush lines, administer IV medications, and feed her through a tube. People often expressed disbelief, saying, “I can’t believe you can do that,” unaware that anyone would do the same in a life-or-death situation. Their comments were a form of self-preservation—no one wants to acknowledge that tragedy could strike them too. I wasn’t angry, but it did hurt. This wasn’t the life I envisioned; I was meant to be a mother, and this was part of it.
Finally, we received a diagnosis: Autoimmune Encephalitis. Unfortunately, due to the delay in diagnosis, she also now faced an acquired brain injury. Her brain and body would never be the same. Yet, there was hope. With the right treatment and care, there was still a chance to have our girl back.
She began a regimen of IV and oral chemotherapy and monthly antibody infusions. We consented to blood products and medications so toxic that nurses needed to wear gloves to handle them, all the while believing it would help her heal. What choice did we have? I was running on autopilot, not contemplating how I would manage it all.
Some months the treatment worked; others, it didn’t. The effectiveness varied depending on the donor antibodies. It became a never-ending roller coaster. Each day, we faced the uncertainty of whether she would be able to walk, talk, or even breathe. At times, she could communicate with us, while other times, her voice vanished for weeks.
People would remark, “I could never endure the ups and downs,” but the truth was, we couldn’t live with the alternative. We committed to an aggressive rehabilitation process, scheduling ten therapy appointments each week—not because we were confident it was making a difference, but because we understood the high cost of inaction.
You might be thinking, “I could never coordinate that,” but if you’re a mother, you would.
When the metaphorical Mack truck hit us, no one handed us capes; we didn’t become superheroes overnight. In fact, our strength felt threatened as the foundation of our lives crumbled. It was the love for our precious girl, regardless of her condition, that carried us through.
Twelve years ago, I knew I would move mountains for my child, but I had no idea how monumental those mountains would be. One of the common clichés I hear is, “You’re never given more than you can handle.” It’s as frustrating as it is untrue. Life is imperfect, and sometimes we face burdens too heavy for any one person to bear. In those moments, we must reach out to loved ones who don’t expect us to be strong and ask for help.
When we shield ourselves with phrases like “I could never,” we rob others of the chance to support us. Let’s be real. Let’s be vulnerable. Let’s acknowledge that “this friggin’ sucks.” Then, help me up from where the Mack truck has left me and say, “I’m sorry your girl is hurting; I’m here.” Believe me when I say that our bad luck isn’t contagious, and ignoring the elephant in the room doesn’t make it go away. We were dealt a tough hand, but love has guided us forward. Together, let’s keep moving ahead.
For more insights on navigating motherhood and health challenges, check out our other blog post here. If you’re interested in effective tools for home insemination, visit Make a Mom. Additionally, Healthline provides excellent resources on pregnancy and home insemination.
Summary
This article reflects on the challenges of motherhood, particularly when a child faces unexpected health issues like Autoimmune Encephalitis after a strep throat infection. The narrative emphasizes the struggles, the isolation felt by the mother, and the importance of love over strength in difficult times. It also highlights how support from loved ones can sometimes fall short and the necessity of being open about struggles to foster connection and understanding.
Keyphrase: Heartbreak with Strep Infection
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