One Day, You’ll Realize Just How Resilient You Are

Parenting

by Lila Anderson
Aug. 11, 2021

Did you know that a variety of neurological conditions can be detected during a standard eye examination? Many parents of children with neurological issues will agree, but I only learned this firsthand when my daughter, Lily, faced her own challenges.

When the neurologist confirmed that Lily was experiencing not just seizures but also infantile spasms, we were thrust into a whirlwind of tests: a spinal tap, blood tests, genetic screening, a PET scan, and an MRI. It was a nightmare I never wanted to endure with my tiny baby. We should have been enjoying quiet moments together, not sitting in a hospital filled with anxiety and uncertainty.

I vividly recall the moment I handed Lily over to the anesthesiologist for her MRI. They needed to sedate her to keep her still, and I couldn’t help but cry until she was safely back in my arms.

One of the relatively simpler tests was an emergency visit to the ophthalmologist. After dilating her eyes, the doctor entered the room, quickly flashing a light in her eyes for a brief moment.

“Well, she doesn’t have tuberous sclerosis,” the doctor remarked, listing a few other conditions he could eliminate just by examining her eyes.

“That’s a relief, right?” I asked, gently bouncing Lily in my arms. She always enjoyed that kind of movement.

“Depends on how you view it,” he replied. “She’s still having spasms, and we don’t know why.”

“Oh…” I murmured against her soft cheek. Did I want her to have a terminal illness? My emotions were all over the place, and I found myself confused about what I should be hoping for. Ironically, whatever condition Lily had led to outcomes that matched or exceeded the severity of many diseases I initially feared. To this day, the uncertainty surrounding her illness is the hardest reality to accept.

Earlier this month, I visited my ophthalmologist and mentioned Lily. I was struck by how astounding it is that some illnesses can be identified or ruled out just by examining the eyes.

The doctor explained that while not everything can be diagnosed this way, certain issues can be detected based on the optic nerve’s pressure.

“How old is your daughter now?” he asked.

“Lily? Oh, she passed away…”

The shock on his face was palpable. “I’m so sorry. What did she die from?”

“We still don’t know. Some kind of neurological or neurodegenerative disorder; she was never diagnosed.”

He took the time to listen, asking questions and acknowledging the difficult journey I had endured. It was a stark reminder of how much more progress medicine has yet to make, despite the advancements we’ve seen.

As I shared details about my other children, he paused and said, “Wait, so you were pregnant with your son when Lily died?”

“Yes, he was about eight months old when she started to decline,” I replied.

His compassion was evident. “You are incredibly strong.”

I have received that affirmation countless times, often brushing it aside. What choice did I have? I felt strong by necessity, not by decision. But in that moment, through his unknowing eyes, I recognized my own courage. Sometimes, I forget how devastating our story is; I become accustomed to living it and overlook my own pain and resilience.

“Thank you,” I said, humbled and in agreement with his observation. Leaving the appointment, I felt a mix of pride and sorrow wash over me. As I stepped into the parking lot, tears of sadness mingled with a sense of awe.

It has been over five years since Lily’s passing and nearly a decade since our journey began. Reflecting on it all felt monumental, reminiscent of my teenage summers spent on outdoor adventure trips, where I learned I could overcome significant challenges. That lesson has stayed with me, especially as Lily’s mother.

This brief appointment served as a reminder that often we only recognize our strength after we’ve conquered the mountain. It’s when we look back that we realize how far we’ve come. We take a moment to appreciate the weight of our burdens and how we’ve grown through them. Each step on the journey is vital, and we vow to cherish every moment.

While I’m still grappling with the trauma of Lily’s illness and loss, I feel I’ve reached a turning point. I can now look back at my family—and at myself—with a sense of wonder. Time has softened the sharp edges of my memories, allowing me to embrace the beautiful aspects of life that I’ve created with my partner and children.

And if you’re looking for some encouragement, know that what you’re going through is extraordinary, and you are facing it—step by step. It may feel like you have no choice, but remember that you always do. Don’t underestimate your strength; embrace it, take a deep breath, and carry it with you as you continue your climb. I am truly in awe of you.

For more insightful stories, check out this blog post and learn more about the options available with Cryobaby’s at-home insemination kit. Additionally, you can find valuable information at this Genetics and IVF Institute resource.

Search Queries:

Summary:

In this poignant reflection on loss and resilience, the author recounts their experiences navigating the complexities of their daughter Lily’s undiagnosed neurological condition. Through a series of medical appointments and personal revelations, the journey emphasizes the strength that emerges from adversity. The narrative encourages readers to recognize their own resilience and to appreciate the beauty found in life’s challenges.

One Day, You’ll Realize Just How Resilient You Are