Gaining Perspective on Life and Loss 5 Years After Losing Our Daughter

Did you know a series of neurological conditions can be diagnosed by a routine eye exam? I am sure all you neuro parents are nodding your heads, but I didn’t realize this until I experienced it with June. Immediately after the neurologist confirmed June was having not just seizures but infantile spasms, we had to run a series of tests on her: a spinal tap, blood work, genetic testing, a PET scan and an MRI. All of it was hell to go through and not how I wanted to spend my time with my 10-week-old baby. We should be cuddling on the couch, not at the hospital poking and prodding June, I thought. I remember handing June over to the anesthesiologist for the very first time before the MRI. They had to sedate her to keep her still for the test, and I couldn’t stop crying until she was back in my arms.

One of the easier tests for June was an emergency appointment with an ophthalmologist. After dilating her eyes, the doctor came in, flashed a light as he looked in her eyes for what seemed like just a few seconds.

“Well, she doesn’t have tuberous sclerosis,” the doctor said as he stood up, listing a few other conditions I’ve now forgotten that he could rule out just by looking in her eyes.

“That’s a relief, right?” I asked as I picked up June, beginning to bend my knees to gently bounce her while patting her on the back. June loved movements like this.

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

“Oh…” I said quietly into June’s cheek. So did I want her to have a terminal illness? I was getting so confused about what I was supposed to be hoping for. Turns out, whatever June had ended up leading to a similar or worse fate than many of the diseases I feared at that moment. And to this day, not knowing what took our baby girl is the hardest thing for me to fathom.

***

Earlier this month, I was at my ophthalmologist appointment. I mentioned June and how crazy it was to me that certain illnesses can be diagnosed or ruled out by looking at someone’s eyes.

The doctor explained they can’t diagnose everything, but they can see some things based on the pressure on the optic nerve — at least, I think that’s what he was saying, and that’s what I understood anyway.

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

“June? Oh, she died…” realizing he wasn’t prepared for that at all, I added, “In 2016, so several years ago. She was almost four. She was really sick.”

“Oh my goodness, I’m so sorry. What did she die from?”

“We don’t know. Some type of neurological/neurodegenerative disorder. She was undiagnosed.”

He sat there with me, asking questions and validating how terrible our experience was, and confirming how far medicine still needs to go even though we’ve come so far.

As I talked about George and Peter, he paused and asked, “Wait, so you were pregnant with your son when June died?” again, sounding astonished.

“He was about 8 months old. Three months old when June started to die,” I said.

“Oh my gosh!” he offered compassionately. And I really felt his shock and sincerity. “You are an incredibly strong woman.”

I’ve heard this affirmation many times through the years, tossing it aside. What else could I be? I was strong by default, not by choice, right? But as I looked at my experience with fresh eyes in the doctor’s appointment — through his unknowing eyes, I saw my courage. Believe it or not, sometimes I forget our story is devastating. I just get used to it by living it, and I can dismiss my own pain…and strength.

“Thank you,” I said as I looked down at my hands and nodded my head. And that was that. There was no explanation, qualifying or downplaying on my part, just total agreement and astonishment in what I did as a mom.

I left the appointment feeling proud of myself. By the time I walked outside into the parking lot, I felt tears of sadness, but also full of awe, slide down my cheek. I rubbed them aside with my fingers before opening my car door to head home. It’s been over five years since June died and nearly 10 since this journey full of twists and turns began. By pausing to look back, I felt like I had just finished something huge. It was reminiscent of my summers spent as a teenager at Camp Mishawaka in northern Minnesota, where I went on outdoor adventure trips in the Northern Lakes region and, my last summer there, through Bob Marshall Wilderness in Montana. During these adventures, I was challenged physically and emotionally while soaking up breathtaking views and bonding with new and old friends over shared experiences. I learned I could do hard things on these trips, and that lesson has stuck with me, especially as June’s mom.

This brief appointment at my ophthalmologist reminded me that it’s usually not until we’ve hiked the entire mountain, are walking away from it, and, incidentally, turn around to see what we actually accomplished. It’s there we realize just how strong we are. We pause, holding onto the straps of our packs that felt so damn heavy when we first started down the trail. We look down at our boots, they’re more worn in, and the blisters aren’t as raw, healing even. We take one more glimpse at that mammoth of a mountain we just tackled, adjust our pack, feeling OK to carry it, almost unsteady without it now. As we head out of the wilderness, we promise to never forget the views, the pain, the challenges, the life lessons, and of course, the inside jokes and the memories made with those who joined us on the adventure. We vow to make the time spent count.

****
I’m certainly not over the trauma of June’s illness, caring for her, and then the grief of losing her. I never will be. But with some distance, I feel like I’m at a turning point now. I can look back and gaze at my family — at me — in wonder. A few years ago, I couldn’t even think about the time without squinting my eyes and recoiling in fear. That has eased, and I’m ready to walk out into the world with this life Matt and I are creating with our boys and hold on to the beautiful things I learned along the way, vowing to have it mean something.

And just in case you need permission — hopefully, you don’t, but if you do, I want to tell you that what you’re going through is extraordinary, and you are conquering it — step by step. It may feel like you don’t have a choice, but trust me, you do. You always have a choice. So don’t diminish your power; soak it in, take a breath, rest and then carry it with you as you keep climbing that mountain. I am in awe of you.