Unveiling The Search Part 1: A Journey into Discovery

I've spent a lot of time trying to pinpoint the moment when the magic turned into mania. Like food that silently expires in the back corner of the fridge. One day it nourishes you, The next day, it makes you sick. Things can change THAT QUICKLY.

For me, the shift began on a night that should have been perfectly ordinary...even sweet. It was the night before 1st grade, and Andy and I were helping our older kids tuck "ready confetti" beneath their pillows. We read the little poem together, that cutesy glittery promise of a magical Year ahead. (I didn't let myself think about the mess I'd be cleaning up in the morning.) We just kissed their foreheads, gathered up the crinkled paper edges, and tucked them in.

But when we woke up, everything was different.

I assumed it was first-day nerves- the way Eliza started past us at the breakfast table, how I felt her drifting somewhere that I couldn't reach. Her giant black pupils. Her bright red cheeks. She blinked at us as if she was underwater. I didn't know it then, but that was the morning that the ground shifted. It was the moment that the magic soured. It would take us the rest of the year- a year of frantic searching- to understand why.

It's hard to describe a year that has felt like an endless search. Searching for answers, for relief, for moments of peace. Searching for safe places to land, for doctors who would listen, for any small pocket of comfort that made sense. We began charting every little thing, altering medications, color coding the days, tracking the cycles. The familiar heaviness of infertility came swarming back, like it had never left. Depression, uncertainty, and spinning vertigo accompanied by utter lack of control entered the chat.

Each morning I woke up inside of a new world, the terrain shifting before I could make any sense of it. We had 24 hours to solve an impossible puzzle. By the end of the day, we'd be lucky if ANY pieces connected. But then the buzzer would go off, the puzzle would be flipped upside down, and the disconnected fragments would fall like the dumb confetti we'd tucked under their pillows. We were failing her.

As Eliza's health deteriorated, it felt like our 200 year old house began to fall apart around us in sympathy. Almost as if the walls understood before we did that something inside of our family was breaking. It was the darkest, gloomiest winter I can remember- weeks without sunlight, a season where the sky couldn't make up its ind about snow or rain, so it offered both at once. The snow melted through old skylights, dripping onto the floor. Chunks of drywall softened, sagged, and finally let go. Collapsing like they, too, were exhausted. We were living in a house of mirrors and it felt like our entire ship was sinking.

The shift towards answers came slowly after another mother opened up online about her daughter's experience with something called PANS/PANDAS. Her words- "She woke up different, like a switch"- hit me like a punch to the stomach. That was exactly what had happened with Eliza. For the first time, I had a name that matched the abstract shape of our experience. I will forever be grateful for this mother's bravery in opening up about such a fragile experience. She gave us something that no doctor, nurse, psychiatrist, teacher, or counselor could. She gave us a map, however faint.

But getting a doctor to recognize this as a possibility was another story. Our pediatrician had never heard of it, although our psychiatrist (thankfully) had. And from there, very slowly, the puzzle pieces began to connect. Progress came in maddening little increments: One step forwards- there's a PANDAS clinic at Nationwide! We can get her in for a consult. One step backwards- after finally sitting face to face with the new director of infectious disease at this consult, he tells us he doesn't "believe" in PANDAS, and is phasing out the clinic.

There was never time to process what we were living through. Processing, for me, has always happened through creating. The chaos and uncertainty left no space for that. Paintings stalled mid-layer. Thoughts frayed halfway through their sentences. Bursts of joy felt temporary, like something might drop if I moved too quickly. Every hopeful lead seemed to come with a gut-punching caveat. Every door cracked open just enough to see another one slam shut.

We pushed through the murk (what else can you do?) and slowly found the right specialists. Voices that would listen. Sitting uncomfortably on waiting lists while our child suffered from the same week-long cycles of sickness and despair. Lines blurred as we joined her in the dark and quiet rooms, rocking back and forth with her, being as present for her as we possibly could...yet knowing that she was far, far away. We continued learning the rhythms of her flares, her dips, her good days. Slowly, we began to ride the waves with a little more steadiness, instead of feeling as if we were swallowed whole.

Before we knew it, the appointments that had been scheduled forever ago finally approached. We found ourselves speaking with doctors who listened, understood, and put things into motion. The amount of blood work Eliza had to do was astounding, but she powered through it like a champ. Like she could also sense that the energy had shifted and that land was in sight. We examined diet and environmental toxins- her school was being remediated for asbestos and I'd heard of other teachers and students get sick. I became convinced that our house had mold growing within the walls and that we were all in danger. (Later, I'd connect the dots and realize that every single member of our family had been sick constantly for the past year. Our minds had been so hyper focused on helping Eliza that everyone else's health had nearly fallen through the cracks.)

Her blood work confirmed everything we already knew- her immune system was seriously compromised. Her

She's been on antibiotics and supplements (in addition to her SSRIs) for MONTHS, but it hadn't done a single thing to slow down or dim the severity of her flare ups. IVIG became the Holy Grail solution, one that we'd have to fight an uphill battle with insurance to cover. We didn't know if it would work, but we knew we had to try. I also knew that we had to get out of our house. Something needed to change, because standing still was no longer an option. Whatever we were desperately trying to hold together was already coming undone.