One in a Million: Life Inside Paige’s Bucket
As a child, I did so many wonderful things — road trips, visiting friends in their homes, sleepovers, big vacations. These were the experiences I always imagined I would share with my own children. My husband, who is from another country, dreamed of going back one day and spending long stretches of time there. Before we had Paige, we carried so many expectations of what family visits would look like, what our daily life would be, and the things we would do with our children.
Then, three years ago, we realized the life we had imagined had become just that — a dream.
We were given a child with a condition — a rare condition — that limits many of the dreams every parent naturally carries.
Yet, she became my new dream.
Life with Paige is not one I would trade, because of the amazing, resilient little girl she is.
Paige’s “Bucket”
In my last post, I explained how ATP1A3 works in the body — how it channels energy to neurons to create the physical, emotional, and cognitive effects we all experience. Paige has a little “bucket,” as I call it. Certain things fill her bucket faster than others. Some things she instinctively avoids, or simply doesn’t give energy to. And her bucket “resets” every 6–10 weeks with a major neurological event. After that, her body begins filling that bucket all over again.
Triggers are different for every AHC patient. For example, some are triggered by water — but Paige isn’t. In this post, especially if you are a newly diagnosed AHC parent or patient, please know that I am only sharing my daughter’s experience for those who follow her story.
What Fills Her Bucket
Paige is one of those children who teaches you strength. She isn’t a whiner. She doesn’t complain. Yes, she has sass — but even that melts quickly when you make her laugh. She is learning her body, her limits, and how to communicate them. And as she grows, we are learning too — discovering what affects her most.
The biggest trigger — what fills her bucket faster than anything else — is life.
Life is simply hard for these kids.
Every sense can be a trigger. Just being awake makes her vulnerable to the constant firing of signals in her brain. That is why I believe she has these major neurological events every couple of months — life overwhelms her brain, and it signals, shuts down, and resets.
But in the day-to-day, what fills Paige’s bucket?
Others’ Emotions in Her Vicinity
I remember a day at the doctor’s office. Two nurses worked with Paige, and each one brought out a completely different child.
The first nurse was anxious — walking quickly, breathing heavily, clearly stressed. Paige became weak, apathetic, and struggled with the machinery.
The second nurse entered calmly. She gently greeted Paige, held her leg softly, and completed the test without being “too much” of anything. Not overly bubbly. Not stressed. Just calm. Paige was giggly, relaxed, and doing what she loves most — playing with her blanket.
As her mom, I struggle with stress and anxiety. On days when it overwhelms me, Paige struggles too. She may become hemiplegic. She may smile less. Sometimes, I have to physically leave her space — for her sake — so I can process what I need to feel without draining her.
I’ve learned that our emotional energy depletes hers. Instead of using her energy to play, move, laugh, and explore, she is using it simply to tolerate being around us.
Think about that.
Children everywhere experience emotional triggers. But for Paige, they affect her neurologically. Perhaps this is a reminder for all of us — to be mindful not only of ourselves, but of how our emotional presence affects those around us.
Fatigue
I never realized how much we value naps until I saw families who can skip them without much consequence. For Paige, naps are everything.
Even a 15-minute nap can reset her brain.
Sleep is the closest thing to a “cure” for an AHC brain. Her naps often determine whether she can enjoy her day or simply endure it.
They are priceless.
Weather & Temperature — Heat, Cold, Wind, Pressure
When moving Paige from our home into a vehicle, we think about temperature, wind, sunlight, and pressure changes. Even bright sunlight can trigger symptoms.
She may be completely fine inside, then suddenly lose muscle control outside. One limb may stop working. Her eyes may move abnormally. Sometimes her tone just disappears.
When cold fronts move in and pressure drops, Paige feels it — even when the rest of us don’t. She can become quadriplegic until the pressure stabilizes.
How can something we don’t even feel take control of her body?
ATP — the energy we cannot see.
Pain & Discomfort
Teething. Something every child goes through.
For most families, it’s uncomfortable. For Paige, it can mean dystonia, paralysis, sleepless nights, and apnea. We dread it so much that we often medicate before symptoms appear. She even takes daily pain medication for everyday discomfort — stiff muscles, sore fingers, general pain.
Pain is one of her biggest triggers.
Yet interestingly, a shot may not bother her — it’s the dull, lingering, deep pain that overwhelms her nervous system.
Change of Routine
Routine is everything.
Like families with autistic children, routine becomes oxygen. Without it, things unravel.
Paige thrives on consistency. When someone is missing from her normal day, her body notices. One day, we ran a simple errand instead of coming straight home — she became quadriplegic until routine resumed.
Visitors, schedule shifts, emotional changes — all of it matters. If people can mold into her routine, her body handles change far better.
This is one of the biggest reasons we cannot travel. Paige thrives in familiarity.
There are many more triggers, but these are the major ones. Sometimes she is triggered and we never know why. But this gives a glimpse into my little girl’s bucket.
Day-to-Day Life
Life with Paige is complicated — so we keep it simple.
We rarely go out. Paige seldom visits grocery stores or restaurants. We prioritize worship, fellowship, time with believers, and being in her safe place — home.
Home is where Paige thrives.
With her daddy, mama, Teddy, and Victoria — this is where her nervous system rests.
Is it a bubble? Yes, it is.
There are many days I grieve the loss of holidays, vacations, and crowded homes. But Paige is worth it.
Living a simple, yet complicated life has enriched my soul far more than a life centered on comfort and convenience.
Paige has taught me how to live sacrificially.
Praise be to God.
