Infantile Spasms Awareness Week

December 1-7 is Infantile Spasms awareness week. Ironically, Jordan was born during IS week and we didn’t even know it.

Part of my brain tries to repress the early part of our journey because that was the most difficult for me as a parent. There is nothing like going through the perfect pregnancy and the most seamless labor and delivery only to have your world crash around you two months later. Every parent wishes for a perfectly healthy child and when that’s taken away there is almost a void left from who you expected that child to be.

When Jordan was first taken to the ER in February 2023 he was only diagnosed with “seizure like activity” and put on Keppra. His EEG wasn’t showing hypsarrythmia yet. But, his spasms continued and we knew something wasn’t right. If it looks like a duck, walks like a duck, and quacks like a duck, then it must be a duck, right?

I won’t get into all the details of our treatment journey because I’ve written about that in detail on other blog posts but, what I will say is when the doctor came in to finally tell us “his EEG is showing hypsarrythmia which is indicative of infantile spasms” I started by saying “okay” and I didn’t know what else to say. The doctor looked at me and said “are you okay?” and I started crying and said “no”. In that moment I wasn’t okay. I had already been reading about infantile spasms all day and night trying to convince myself that wasn’t what Jordan had. The treatment, the mortality rate, the bleak developmental future all haunted me.

As I think back now it wasn’t necessarily all those things that crushed me entirely. It was how I feared the world would treat Jordan in response to those things. Reality is we live in a cruel world and not everyone is compassionate about others differences. That is was truly broke my heart. That Jordan was going to grow up different and everyone was going to remind him of that. I feared or still fear that he won’t be able to participate in traditional schooling, play sports with his bother, drive a car, or go on his first date. All normal life things that we otherwise take for granted.

All because of a fucking diagnosis that they still don’t know why he has it.

I’m a pretty even tempered person by nature and by trade but I still get angry. I don’t let that anger drive my decisions or my outlook on Jordans situation but it’s only natural that I sit back at times and think “why fucking us?”. Infantile spams is rare only affecting 1-4 babies for every 10,000 births. Where is that luck for the mega millions? No, we get it for a rare, life changing, epileptic disorder.

I get angry when I think about how much my son has suffered in his first year of life. From EEGs that have been on so long they left burn marks on his little head, getting intramuscular shots twice a day, hundreds of daily seizures, hypsarrythmia that took over his entire brain and turned him in a shell of the baby he should have been, developmental regressions, and medication after medication failure.

I get angry when parents complain about inconsequential health issues that I only dream Jordan had instead. I’m quick to catch myself when I get caught up thinking that way because everyone is entitled to their own subjective experience. I’m also not ignorant to the fact that there are many IS parents that wish their children had Jordans outcomes too.

I get angry at health insurance companies that only care about dollar bills and not the best possible treatment.

We still don’t know what Jordans future will look like and we’ve travelled 430 miles to try and figure it out. Right now we’re in a sweet spot with Jordan. He’s doing well and progressing on his current medications. I’m always hesitant to be too optimistic because then the universe comes back to bite me in the ass. But I’m taking this progress for everything that its worth. I’m seeing my son for the first time, his smile, his personality, just him.