It was a whopping gut punch.

At Miles’ eighth birthday party, I saw what I knew all too well was a return seizure. Quick and small, imperceptible to everyone else, it was a cruel visual amidst the balloons and laughter.

For nearly four years we have had a seizure-free boy. My husband and I have fought the biggest battle of our lives, with the best pedi epilepsy team we could assemble, to slay our firstborn son’s devastating seizures. I was still counting the days of peacefulness that come when seizures completely leave.

After seeing that God-forsaken convulsion, I walked out of the busy room to release my silent primal scream alone. I dried the corners of my eyes and forced my facial expression into neutral before heading back into the celebration. I whispered the news to my husband. We went on with the sledding, the potluck dinner, the piñata-smashing in the barn, the birthday cake, the gathering of so many people from near and far who come to honor our son at this time every year. I was in an unbelieving daze.

The next day, my mother (who had also seen the first event) told me she had seen a second one just like it later at the party. She had shielded me from the news as we celebrated.

As Miles’ actual birthday approached, I was seeing more long-familiar spasm-like events and cycles of blinking, and scheduling a rush EEG.

It took three antiepileptic drugs plus the Ketogenic Diet to finally get Miles’ intractible seizures gone in 2009. There aren’t words for the burden that had been lifted as the seizures floated away and the daily hauntings finally stopped. We held steady on that perfect, freedom-giving treatment cocktail and enjoyed every second of our newly present child. He could do little, but he could be with us now, and that was our priceless reward.

Two summers ago, Miles was then checked by EEG. To our shock, his brain wave pattern had actually normalized. His epileptologist’s novel and aggressive treatment plan and persistence had not only gotten Miles seizure-free, but had also headed off a severe multiple seizure disorder called Lennox-Gastaut syndrome. Miles’ EEGs had started to show LGS-type activity, but we mercifully did not know this until afterward. I had been terrified of Lennox-Gastaut as a possible outcome for Miles since he was diagnosed with infantile spasms as a baby. Needless to say, Stephen and I stood in awe at this sub-specialist’s achievements for our toddler’s worst-case seizure disorder. There will never be a thank-you big enough.

Then we started ever-so-slowly peeling away the treatments, at his sub-specialist’s advisement, to see if Miles could fly seizure-free on his own.

First we slowly removed the excellent targeted drug Sabril, which had reduced his intractible infantile spasms but was not yet FDA-approved. We had had to get it from a Canadian pharmacy, and my in-laws had graciously paid the out-of-pocket expense for years. I also knew a woman who had to drive to Canada years before, to get it for her son, and she and her husband were threatened at the border. Their son actually passed away young, and this mother had become a nurse who eventually treated Miles in acute rehab. Parents have done a lot to get Sabril for their suffering children when it was not yet available in the US. It was terrifying to take Miles off of it, but his epileptologist reassured us that he had likely outgrown the infantile spasms by age 5. We held faith and followed the wean, and the seizure control held.

Next we weaned the Topamax, the last drug we had added to the cocktail, and the one which had magically made all of Miles’ seizures completely disappear. We watched him like hawks as we reduced the dose over months. The seizures stayed away, and he actually brightened off the med.

We then started slowly weaning the Keto Diet, keeping him on the last AED, Keppra, to be safe.

For the last eighteen months we methodically dialed down the fat ratio of Miles’ diet. It was a long way to go from the maximum possible ratio of 4:1. With all faith and patience we made the slow changes that finally, this Thanksgiving, took him out of ketosis. It was nerve-wracking as hell; Miles had been on the Keto Diet since he was 11 months old. When you take a patient out of ketosis, it is a “cold turkey” change. But Miles handled it beautifully, and suddenly he could have carbs and sugars and some normalcy around his tube feeding ingredients and oral-motor tastings.

Miles’ seizure threshold stayed rock-steady during these slow weans which took almost two years in total. Seeing his brain succumb to seizure again at his eighth birthday party was a very hard way to find out that our son could not fly solo.

Four days after he turned eight, Miles had the ordered sleep-deprived EEG. On the table, while the tech applied leads all over his head, he had a handful of spasm-type seizures deliberately provoked by the lack of sleep. It took all my strength to watch and be present as I held him down and he cried. I had kept him awake per the hospital’s orders, so ultimately I was making my boy seize. We hadn’t even captured the seizure activity because he wasn’t fully prepped yet and the machines weren’t turned on. Never had I imagined we would be thrust back into this ugly, complicated neuro world and losing.

Nonetheless, we try to find our gratitude with our footing. We are thankful that the seizures are not frequent, at least for now. We are thankful that at this age they should no longer be devastating to Miles’ continued slow development. We push the Keppra dose and keep the blessed Keto Diet treatment option in our back pocket. I alert my son’s extended team about his change in neuro status, and accept their stream of condolences. I hold off on ordering a new Medic Alert bracelet for Miles that has “seizures” removed from it. I recalibrate and mourn.

Such is the nature of catastrophic childhood epilepsy. The battle is apparently never over. When you let yourself completely forget you were ever in it, and kick back because of the elapsed time and the proof and the trust you’ve built, you can get ambushed. But God knows you remember how to fight, and why.