A week after my daughter’s first birthday, everything changed.
She had her first observed seizure, though we didn’t know that’s what it was at the time. I was standing at the kitchen sink when I felt something wet hit my arm and noticed she was slowly collapsing out of my arms. I looked down and saw her turning blue, drool pouring from her mouth. I thought she was choking. I screamed for help.
We were incredibly lucky to be staying with family. My sister-in-law had recently reviewed an infant choking course and guided me step by step when my own training left my mind in the panic. Back blows, chest compressions, rescue breaths … nothing seemed to work until finally, she gasped.
At the ER, we were told it was a BRUE (brief resolved unexplained event). We tried to move on.
Then it happened again a week later. And again. Every few days, until she had a tonic seizure at daycare and we landed back in the ER, this time with a plan to treat for epilepsy.
The next year was survival mode: up to 20 seizures a day, sleepless nights, oxygen monitor alarms, constant fear. We discussed brain mapping and even surgery. Then, as suddenly as it reached its worst, the frequency dropped. We went from 10–15 seizures a day to a few a week. Surgery was no longer the best option.
What followed was the exhausting cycle so many epilepsy families know too well: start a new medication, titrate the dose up, hope for the best, just kidding! the medication stopped working, taper off, start over. We are in a constant state of adjusting, still navigating seizures multiple times a week.
While managing her epilepsy, we were also trying to build a normal life. With my husband launching a business, I became the sole provider, and daycare seemed like our best option and it seemed to be going well until we were unexpectedly told she needed a behavior plan.
I was blindsided. I had believed her struggles were typical toddler behavior because that’s what we had been told by her daycare providers. Instead, that moment pushed us toward a developmental screening where we discovered delays we hadn’t fully understood before.
That unexpected turn changed everything.
She entered a preschool special education program with incredible support, and for two years, we watched her grow. By kindergarten, we thought we had the right plan in place through her IEP but deep down, I began noticing the widening gap between her and her peers.
One summer walk confirmed what I feared: while other children chatted and played effortlessly, she couldn’t fully connect or keep up… and didn’t have the desire to.
So we made another major, unexpected decision, we moved less a month prior to the next school year starting.
In our new city, she entered a different special education program where she could be on her own track, and this year has brought progress we once only hoped for. She’s writing her name, recognizing letters, expressing emotions, and following routines. For the first time in a long time, hope feels stronger than fear.
Her journey has been unpredictable from the very beginning. Epilepsy, developmental delays, educational pivots. None of it has gone the way we imagined.
But through every terrifying, exhausting, and unforseen chapter, she continues to prove that progress doesn’t always look the way you planned … and sometimes the most beautiful outcomes come from paths you never expected to take.