Parenting can be a journey filled with unexpected twists, and I discovered just how true that is when I faced a series of challenges with my daughter, Lily. Like many parents in similar situations, I was unaware that various neurological conditions could be identified through a simple eye exam until it happened to us.
When the neurologist informed us that Lily was experiencing not just seizures but also infantile spasms, our world flipped upside down. We had to subject her to numerous tests: a spinal tap, blood tests, genetic screenings, a PET scan, and an MRI. It was agonizing to witness my tiny infant go through this ordeal when all I wanted was to cuddle her on the couch rather than spend hours in a hospital.
I vividly remember the first time I had to hand Lily over to the anesthesiologist for her MRI. They needed to sedate her to keep her still, and I couldn’t hold back my tears until she was safely back in my arms.
One of the less traumatic tests was an emergency appointment with an eye doctor. After dilating her pupils, the doctor examined her eyes for what felt like only a moment. “She doesn’t have tuberous sclerosis,” he said, listing a few other conditions he could eliminate just by looking into her eyes.
“That’s good news, right?” I asked while gently bouncing Lily in my arms, something she always enjoyed.
“Depends on how you look at it,” he replied. “She’s still having spasms, and we don’t know the cause.”
I was taken aback. Did I want her to have a serious illness? My mind raced, filled with confusion about what I should be hoping for. Ultimately, the condition she had led to outcomes that were just as troubling as those I initially feared. To this day, the uncertainty of what happened to my little girl is a burden I carry.
Recently, during an eye exam for myself, I mentioned Lily and how surprising it was that some illnesses could be detected just by observing someone’s eyes. The doctor noted that while not everything could be diagnosed this way, certain issues could be identified based on optic nerve pressure.
“How old is your daughter now?” he asked.
“Lily? She passed away…” I said, realizing I had shocked him. “In 2016, several years ago. She was almost four and very ill.”
“I’m so sorry. What was the cause?” he inquired gently.
“We never found out. Some type of neurological or neurodegenerative disorder,” I replied.
He listened intently, validating the pain of our experience and acknowledging how far medicine has come yet still has much progress to make.
As I shared about my son, Max, and his brother, Ben, the doctor paused. “So, you were pregnant with Max when Lily passed?” he asked in disbelief.
“He was about eight months old when Lily’s health declined,” I explained.
His compassion was palpable. “You are incredibly strong,” he stated sincerely.
I’ve heard that affirmation numerous times, often brushing it off. What else could I be? I was strong out of necessity, not choice. But in that moment, through the doctor’s eyes, I saw my own courage. Sometimes I forget how devastating our story is; I get used to living it and can downplay my own pain and resilience.
“Thank you,” I said, nodding. There was no need to downplay my journey—I was proud of what I had faced as a mother.
As I left that appointment, I felt a mix of sadness and awe. Tears streamed down my cheeks as I headed to my car, reflecting on the past five years since Lily’s death and nearly a decade since our tumultuous journey began. It reminded me of my teenage summers spent at a camp in Minnesota, where I faced physical and emotional challenges while enjoying breathtaking landscapes and making lasting memories. Those experiences taught me that I could endure difficult things, especially as Lily’s mom.
That brief appointment reminded me that often we don’t realize our strength until we’ve completed our journey, turning back to see all we’ve accomplished. We may not notice how far we’ve come while we’re in the thick of it, but upon reflection, we can appreciate the weight we’ve carried and how we’ve grown from it.
I’m not over the trauma of Lily’s illness, nor will I ever be, but I feel I’m at a turning point. I can now look back at my family and myself with a sense of wonder and gratitude. A few years ago, I couldn’t even think about the past without feeling overwhelmed. Time has softened those edges, and I’m ready to embrace the life my partner, Matt, and I are building with Max and Ben.
If you’re navigating similar challenges, know that your journey is extraordinary, and you are conquering it step by step. It may feel like you have no choice, but remember, you do. Your strength is profound—acknowledge it, rest when needed, and continue your ascent. I am in awe of you.
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Summary:
This reflective piece shares the author’s journey of navigating the challenges of parenting a child with neurological issues, highlighting the strength gained through adversity. It emphasizes the importance of recognizing one’s resilience and the ongoing process of healing after loss. The author encourages others in similar situations to acknowledge their power and progress.
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