On Friday, we saw Tommy's neurologist for what is hopefully the last time. The. Last. Time. When you've been seeing a specialist regularly for 2.5 years, it feels a little strange to break that relationship, but good. Very good. When we began weaning him off seizure meds in January, we hoped so big that this would be it. The end of our journey with epilepsy, but we were afraid to hope too big because epilepsy has a way of squashing your hope.
It's been a long journey, yet I recognize that our journey has been much shorter than that of so many others. Still, you guys. My baby looked like this when our journey began. That shaggy hair and those tired eyes from keeping him up for a sleep dep EEG and the always present pacifier. He was SO LITTLE. Remember how I rode in the MRI with him?
I get a choke-y tight feeling in my throat when I remember how terrifying those days were. We have come so far.
When we hit the two year mark (October!), his chance of remaining seizure-free forever hits 80%. It's amazing how this disease works, because one day I had a healthy 15-month-old who didn't like to sleep. And then, out of nowhere, he had three seizures in one week. Just like that. There are no signs with the type of epilepsy Tommy had. No fever. No illness. Nothing. Just one day, he fell down and had a seizure.
And just as suddenly, almost two years later, his neurologist tells us that we don't have to consider him actively epileptic anymore. I don't have a child with epilepsy. I don't. It is really hard to process that, because I did and now I don't, but I fully recognize that I could again and my God, that's a lot for your brain to handle. I asked her what we should do on his forms for pre-school. Do we write that he has epilepsy? She said no, that we don't want them to hover, that we want them to let him to climb to the top of the jungle gym and yes, yes, we do. But we also want them to know that he has a history of seizures, so we put that under past medical history, just like we would a broken leg. She said that often times, she still has people come in, but because Tommy shows no developmental delays and because he's never shown seizure activity on an EEG, there's no need for us to come back, unless he has another seizure, of course. No more yearly EEGs or blood tests.
I thanked his neurologist profusely for all she's done for us, for listening to us when the neurologist at our local hospital wouldn't. For being caring and loving Tommy. She told us that she loved these graduation ceremonies, even though she would miss seeing us. I know that we were probably one of her very minor cases, but she always treated us like his epilepsy was a big deal--she always understood that every seizure was so very scary.
This is the end of our journey, I hope, but I know that so many are still in their journeys. Epilepsy is and will always be a cause near to my heart. As we left her office, I found it hard to not cry, because it was big and overwhelming. We let Tommy choose a restaurant that night to eat dinner and celebrate, though I wasn't sure if he understood what we were celebrating. Someday he will. Someday he will understand this part of his life that was so big, during which he was so brave.