One of my earliest memories of being a mother is the moment a nurse gently guided my daughter’s tiny mouth to my chest, while I encouraged her to latch on for her first feed. It didn’t feel instinctual; in fact, it was painful. But for this little girl I had known for mere moments, I was ready to do anything. So, I persevered, and together we eventually figured it out. It wasn’t about ease; it was about doing what I believed was best for her. In that moment, the strength of a mother’s love became crystal clear.
I went back to school when my daughter was just five days old and returned to work shortly before she turned two weeks. It wasn’t out of desire, but necessity—I had to provide for us. Friends and family would say, “I could never leave her,” but it didn’t feel like I had a choice. I knew it was what was best for her, so I made it happen.
I nursed her for two years, exclusively at first. I tried formula once, but her violent allergy made it clear that wasn’t an option. I could have explored other formulas, but I felt the risk was too great. Instead, I woke up twice a night to feed her and pumped two more times. For the entire first year, I didn’t sleep more than two hours at a stretch. It was what she needed from me. I often heard from well-meaning friends, “I could never do that.” It seemed they thought they were offering support, but I realized those words were isolating. I was just a mother, doing my best.
My daughter’s childhood was normal and healthy—until it wasn’t. Life has a way of delivering unexpected challenges, and for us, it came in the form of strep throat. It hit her hard, first making her physically ill and then attacking her brain. In what felt like an instant, the child I knew was gone.
She began experiencing gaps in her memory, heightened anxiety, tremors, and uncharacteristic claustrophobia. Suddenly, she couldn’t tolerate being in a car, attempting to escape even when they were moving. A little girl who had always insisted on matching her outfits now insisted on wearing athletic clothing. My sweet, agreeable child had become defiant, and school, which had always been easy for her, became impossible. Everything was turned upside down, and my heart broke for her.
Friends and family would look at us and shake their heads, saying “I couldn’t handle that.” While they meant well, it felt like a polite way of expressing their relief that it wasn’t their child. Her symptoms matched something called PANDAS, a condition associated with behavioral changes following strep, which is recognized but frustratingly controversial in the medical community. Finding a doctor willing to treat her felt like an impossible task.
As we searched for help, she continued to deteriorate. The same friends who offered their support would say, “You’re so brave” or “I could never.” After countless frantic calls and hours of searching online, we found a physician in Cleveland who said he could help, but it would be costly. He explained that insurance would cover injuries from a plane crash, yet not for her condition. There was no fraud involved; just a harsh reality we were forced to accept.
Ultimately, the cost became irrelevant. My daughter’s condition worsened rapidly, and it was too late for the help we sought. One night, while watching her favorite movie, she began to seize. Those seizures led to hallucinations, and I watched helplessly as an ambulance took us away.
In the midst of this chaos, friends and family rallied around us, offering to help with my other children, bringing coffee, balloons, and whispering words of encouragement like “You’re so strong.” But it wasn’t strength that propelled me forward; it was love. Their well-intentioned words, while meant to uplift, often diminished my pain. I wasn’t operating from a place of strength; I was simply a mother, and despite the love I felt, my heart was breaking.
It would take almost another year to find the help we desperately needed. It was a terrifying year filled with hospital visits, treatments, and the worry of whether my daughter would return safely from each ambulance ride. As time passed, fewer people visited us in the hospital. Life continued for them, while ours seemed to be on pause. Yet, I still heard, “I couldn’t endure what you have,” or “Thank goodness she has you.”
Throughout that year, I learned how to administer IV medications and feed my child through a tube. People would express disbelief at my ability to do this, not realizing that when faced with life or death, anyone would rise to the occasion. I understood their comments were a form of self-preservation; no one wants to think that misfortune could befall them. It wasn’t that I was angry, but it did sting. I was simply meant to be a mother, and this journey came with that role.
Eventually, we received a diagnosis: Autoimmune Encephalitis. The lengthy search for answers also meant my daughter had sustained a brain injury. Her brain and body would never be the same, but there was hope. With treatment, I believed we could still have our girl.
She began a regimen of IV and oral chemotherapy, along with monthly antibody infusions. We signed consents for blood products and medications so toxic that nurses had to wear gloves to handle them, all while clinging to the hope that they would help her. I moved through life on autopilot, not contemplating “how I’d do it.”
Some months the treatments worked; others, they didn’t, mainly because donor antibodies varied. It felt like being on a roller coaster we couldn’t escape. Day to day, we were at the mercy of her illness, unsure whether she’d be able to walk, talk, or even breathe. Sometimes, she could speak; other times, her voice would vanish for weeks. I often heard, “I could never cope with the ups and downs,” but the truth was, we couldn’t live with the alternative.
We dove into rehab, scheduling ten therapy sessions a week. It wasn’t out of confidence that it was effective; it was because we understood the cost of inaction. You might be thinking, “I could never manage that,” but if you’re a mother, you would.
You see, when the metaphorical Mack truck hit us, nobody handed us capes. We didn’t become superheroes overnight. If anything, the foundation of our lives crumbled, yet the love for our daughter, regardless of her condition, carried us through. Twelve years ago, I promised I would move mountains for her, but I had no idea how steep those mountains would be.
One of the clichés I often hear is, “You’re never given more than you can handle,” and it frustrates me because it’s simply not true. Life can deal us burdens far too heavy for one person to bear. In those moments, we need to reach out to our loved ones and seek help, instead of masking our struggles with phrases like “I could never.”
Let’s be real and vulnerable together. It’s okay to say, “This is incredibly hard.” And then join me as we pick each other up from where life has knocked us down. Reach out and say, “I’m here for you and your beautiful girl.” Trust me, our misfortune isn’t contagious, and avoiding the hard conversations won’t make them disappear. We’re navigating a difficult path, but love has been our guiding force. Together, let’s keep moving forward.
If you want to dive deeper into similar stories, check out our other blog post here: Home Insemination Kit. For more information on related topics, you can visit Intracervical Insemination, an authority on this subject, or find excellent resources at American Pregnancy.
Summary
This heartfelt narrative explores the journey of motherhood through the lens of a mother who faced overwhelming challenges when her daughter fell ill after a strep infection. As she navigated the complexities of her daughter’s health, the mother reflected on the isolation that comes from well-meaning but misplaced comments, the strength of love, and the realities of seeking help in times of deep need. Ultimately, she emphasizes the importance of vulnerability and community support during difficult times.