The Weight of Waiting: A Neurosparkle Perspective

It is easy to try hard things when you have a soft place to land.

Can you imagine what it would feel like to know that you are loved? Beyond doubt. Beyond question. To know that you are loved for who you are. To know that you are worthy and important and enough. Just as you are. Maybe not for everybody—But for someone.

I can. And I do. I have lived with that knowing for my entire life. To understand who I am, you must understand who I came from.

I was reared by unicorns - two parents who saw me for who I am and created a world that allowed me to thrive by being myself. Two parents who were madly in love with each other. Two parents who, when faced with two daughters as different from each other as we were from the rest of the world, decided to become the parents we needed instead of asking us to become the children they wanted.

I do not take that privilege lightly or discount how rare it is. Together, they formed the Pragmatic Positivity that is the hallmark of how I see the world. The very cornerstone of Get to No University.

The Story of My Father, The Eternal Optimist

My father has always believed he could control his destiny. His life changed at 13 when he met my mother. She knew what she wanted, and it was him. Once she got him, she never let go. His stellar Air Force career and the life that followed weren't just of his own making; he knew how to ride the wave.

In high school, his yearbook inscription read "The man who knows and knows he knows." That confidence carried him through a life that teenage Billy LeFevre could never have dreamed of or even known how to imagine.

His life philosophy, borrowed from an Old Milwaukee commercial, was simple but powerful: "You know, it doesn't get any better than this." Not words of resignation but rather a declaration that if it all ended at this moment, it's been a glorious journey. He knew how to want what he wanted while being happy with what he had.

The Fight of His Life

Fifteen years ago, my father was given a de facto Alzheimer's diagnosis. The improvement in his symptoms after starting Alzheimer's medication seemed to confirm it. The good news was his symptoms improved; the bad news was the diagnosis itself—a slow, cruel disease that brings grief at every stage on its inevitable path.

But if you know my dad, you know that he made a characteristic decision: he would reverse engineer the aging process and be the first person to outwit Alzheimer’s. He had one singular focus and only one goal: to outlive my mother and be strong enough to take care of her for the rest of her life.

After he heard an avocado a day might help, he ate one with every single dinner. Same with walnuts, cinnamon, blueberries, pomegranate juice. Exercise became his weapon against time. He was and is obsessive about going to the gym - even on vacation.

Then came that Friday last July. He drove himself to the gym and worked out for two hours before his ophthalmologist appointment. Dr. Greenhaw looked at his eyes and discovered a visual defect - evidence of a recent and major stroke in his occipital lobe. That night, he fell, breaking three ribs, the first domino that would topple many more. Over the next twelve months, he would be hospitalized 10 times in 8 different facilities.

A Lifelong Dream (That Actually Came True)

While Daddy fought his battles, I had my own dreams—dreams of being there when my parents needed me most. For as long as I can remember, I've dreamed of being my parents' caregiver when they grew old. Everyone knew it - in fact, when my full-time caregiving journey began, my sister sent me a text saying exactly that. Caregiving wasn't something I dreaded—it was a calling that had shaped every aspect of my life.

Building a Life Around Love

I met my husband shortly after Daddy’s original diagnosis of Alzheimer's. We agreed that our life together would be built around the goal of being as involved in our families' lives as possible. We made intentional choices, structuring our business and our home base to allow for maximum flexibility and presence.

We moved to Quincy, IL, my husband's hometown, to be close to his immediate family. But we built our business strategically - photographing beach houses when my parents lived in Charleston, then adapting to hotel photography when they moved to Georgia to be near my sister and her family. Hotel photography allows us to work just a few days a month, freeing us to make frequent trips to Georgia.

When Dreams Meet Reality

Greg and I had agreed to keep them in their own home as long as possible, even if it required us to move in with them for a while. After years of going back and forth, driving the 14 hours each way, I moved in for months after the stroke and fall, watching my father claw his way back with his characteristic will and determination.

But eventually, it became clear that there was no more propping. If I continued trying to prop them up, we would all fall, and when it was all said and done, none of us would be left standing. We made the difficult decision to move them to Quincy for what we thought would be a three-month trial period.

A Love Story's Unexpected End

What started as a temporary move became permanent. They moved from Georgia to make Quincy their home for the rest of their lives officially on December 27, and then Mommy died unexpectedly on January 27. Nine days after I took her to the doctor for a tummy ache.

She was his reason for living. Not just in an emotional and fairy tale way. She had a myriad of strange medical situations ever since they were married. Like me, he was a fantastic caregiver but unlike me, he never complained. He cared for her with dignity and grace and love... the likes of which you have probably never seen.

Theirs was a love story with an incredible happy ending—one that deserves to be told when I can find the right words. In the end of this love story, the hero got his girl and he won the prize that he fought so hard for. He had willed himself to outlive her.

He just hadn't calculated what that would look like.

When Mommy passed, friends and family surrounded Daddy during the celebrations of her life. But then came the hollow victory: returning home with his trophy - a wooden box filled with her ashes. He had won every fight he could, but the prize was a life without her. If this were indeed a fairy tale, he would have taken his last breath right after hers, their love story complete. But this was a real life fairy tale, not a Nicholas Sparks novel.

Facing an Impossible Choice

The doctors had given us two possibilities, both heartbreaking. They thought he might die within a few months because their lives were so deeply intertwined. But if he survived, they warned that the will to live he had drilled so deeply into his psyche could mean his body would keep fighting for many years after his mind was gone.

Either way we were going to lose him - the question was whether his brain or his body would die first.

The Plot Twist Nobody Saw Coming

We had prepared ourselves for the worst when we stopped his medication. We thought - even hoped - that without the medication holding back the tide, the full effect of the disease would become apparent. In a way, we were hoping for sweet relief from the grief of remembering his love and his loss.

Instead, something extraordinary happened…he got better. A lot better! We discovered he had never had Alzheimer's at all.

Here's something most people don't know: Alzheimer's medication can actually cause Alzheimer's-like symptoms in people who don't have the disease. It's a cruel irony of neuroscience that the very medications meant to help can create the symptoms they're meant to treat in people who don't actually have Alzheimer's.

What had likely occurred 15 years ago was a minor stroke that changed his personality. His memory issues mirror my ADHD more than Alzheimer's - a revelation that emerged when he improved after stopping the medication. The affected area controls working memory, executive function, judgment, and problem solving - the very functions affected by my ADHD.

Finally, we have something I can understand, even if I can't control it. This is more than a story about my father - it's about how the brain we have can change, and how our understanding of it must remain open to change as well.

What Does This Have To Do With Neurosparkle?

Yes, it's a sweet story, but the underlying message is what's important. Daddy’s case illustrates a crucial point: labels can significantly impact our understanding of how our brains work.

Neurosparkle is not a diagnosis. It's a way of seeing the world. A lens that I see through that informs my every move.

Labels don’t always fit but diagnoses do matter. In this case, as is the case with many Neurosparklers, the differences in my father's brain were misunderstood. The treatment that was supposed to fix him actually made him worse. The expectations we set for him based on a diagnosis of Alzheimer's were incorrect.

He does forget stuff - he self identifies as CRS (Can’t remember shit). But there is a difference between remembering and recalling…as anyone with ADHD can attest. His stroke affected his ability to recall information that is still stored in his brain and his heart and his gut. But sometimes, he needs help bridging the gap. Sometimes he needs a cue to get from one part of the story to the next one.

And that's where being a Neurosparkler prepared me for this phase of our journey together. I recognize his new pattern of thinking because his strokes affected the frontocortical region of his brain - the same area that houses my neurodivergent functions.

It's about expectations, and it's about seeing the good that remains - just as he and my mother always saw the good that is in me.

The Weight of the Waiting Game

He's still here, that will to live as strong as ever. That positivity strong but sometimes wavering. Ask him "How are you this morning?" and he'll tell you "It's a good morning because I'm still alive."

We wait now - for surgery dates for a total knee replacement, for rehab placement after surgery, for news from the Illinois Veteran's Home, a place where he can be surrounded by people who value his spunk and his Southern charm, respect his military service and hopefully a group of new friends who understand his sacrifices because they have been, and are, where he is.

My heart breaks knowing there's nothing he can do now except wait. The responsibility has shifted to my shoulders to ensure he's okay, and the weight of that responsibility would threaten to break me if I had to bear it alone.

But I am not alone. He has been my hero, and now I am his. I don't know if I'm up to the job, but I know I have to try - just as he always has. In the end, I know that love has always been our soft place to land—through every hard thing we’ve faced, and every challenge still ahead.

A Message from Mommy

Oh, my sweet Poopsie,

I see you. I see how you're using every gift we ever gave you - that beautiful brain that works in its own special way, that stubborn determination to do things your way, that endless capacity for love that sometimes overwhelms even you. Who knew that all those years of letting you be exactly who you are were preparing you for this moment?

You know what makes me smile? Watching you understand Daddy's brain in a way that nobody else can. The way you help him find those words, bridge those gaps, tell those stories - just like we used to do for you. Remember how we never tried to make you think in straight lines? Now look at you, using those curvy thinking paths to help Daddy navigate his new normal.

I've been watching how you and Greg built your whole life around being there when we needed you. The way you structured everything - your business, your home, your schedule - it wasn't just a dream, was it? It was a promise. And oh my darling, how you've kept that promise.

Your Daddy, my beloved husband, is struggling without me. But you’ve become his reason to keep going—not in the same way I was, but in a way only you could be. You understand his brain fog because you've navigated your own. You know how to help him find his words because you've struggled to find your own so many times.

I know the waiting is hard. The not knowing, the constant adjustments, the weight of all those decisions - it's so much heavier than you ever imagined. But Poopsie, you were built for this. Not because you're perfect (Lord knows you got my tendency to overthink everything!), but because you're you - with all your beautiful Neurosparkle ways of seeing the world.

Remember when you were little, and you accepted that your brain worked differently than everyone else's? You knew that everyone was gifted in their own kind of different. Look at you now, using that different way of thinking to understand Daddy's new way of processing the world.

That's not a coincidence, Poopsie. That's your gift.

And when it gets too heavy (because it will), remember what Daddy always says - "It doesn't get any better than this." Not because this is easy, but because you're living your love story too. Different from ours, but just as beautiful in its own way.

Let yourself rest when you need to. Let Greg take care of you the way Daddy took care of me. Love your sister the way we always loved you both. And know that every time Daddy smiles because you've helped him bridge one of those gaps in his thinking, a little bit of my love for both of you shines through.

You've got this, my darling. Not because you're perfect, but because you're perfectly you. And that's always been more than enough.

Love always,

Mommy