Here We Go Again

Here we go again
Same old stuff again
Marching down the avenue
Six more weeks and we’ll be through
I’ll be glad and so will you
U.S. Army Marching and Running Cadence

I was never much of a runner. I had the look of one. Tall and skinny, with long legs that should have made running easier. I was even a fast sprinter. But anything longer than the size of a football field, and my brain would scream at every one of my moving parts to stop.

Imagine how much fun I had when I joined the army, where nearly everything involved…you guessed it…running. We’d wake up early every morning, head downstairs, and fall into formation. Our drill sergeant and his team would stand in front, bark out a few orders, and then my fellow soldiers and I would turn and follow our leaders, matching the rhythm of our steps to theirs, for however many miles we’d run that day.

A few minutes into the run, one of the sergeants would begin calling out a cadence. Military cadences are rhythmic chants used during marches and runs to maintain a consistent pace, foster teamwork, and boost morale. They help synchronize movements, improve endurance, and build unit cohesion.

They were magic. They kept me focused on the rhythmic call and response rather than the fact that I hated running, that my lungs and legs hurt, and that I should stop. Because I couldn’t stop. I couldn’t let my squad down. I couldn’t let myself down. I had to push through.

One of the cadences, “Here We Go Again,” summed up basic training perfectly: the same grueling routine, day after day. Wake. Run. Eat. March. Train. Eat. March. Train. Eat. Chores. Bed. Every day, for 8 weeks, the same thing.

Anytime I find myself repeating a pattern, especially a challenging one, I think of those early morning runs. I think of that need to push through, to not let my squad and myself down.

Here we go again
Same old stuff again

We’re approaching one of those times. Toward the end of the school year, our son is always exhausted. He’ll have a harder time waking up in the morning and randomly fall asleep in the afternoon. Around the same time, baseball, one of the few non-school activities he still enjoys, starts demanding more energy and mental bandwidth. We also start figuring out what the following school year will look like, scheduling IEP meetings, and talking with his school and the district about our son’s challenges, needs, and potential. It’s mentally, physically, and emotionally draining on the entire family.

Six more weeks and we’ll be through.

Six more weeks until the school year ends. Six more weeks to push through. Six more weeks of having a routine, structure, and certainty. Six more weeks until the story that has been written ends, and there are only blank pages unless we can write down a new plan before then.

It’s exhausting. It’s like those basic training marathon runs, where somehow we’d run in a circle but only be running uphill, defying physics, logic, and any sense of fairness. It tests our endurance and commitment. Parts of my brain are screaming to just stop.

But we can’t stop. We can’t let our son down. We can’t let ourselves down. We have to keep going. We have to fill those pages with a plan for the next year, until we find ourselves again six weeks from the end of the school year with the same cadence echoing in my head.

Here we go again.

Same old stuff again.

Awareness Never Ends

This post is part of the Epilepsy Blog Relay™, which will run from June 1 to June 30, 2018.  Follow along!


We sat at a large, round table in the special education classroom with half of us seated uncomfortably in child-sized plastic chairs. My wife, our advocate, and I sat on one end of the table. The district’s lawyer, psychologist and special education coordinator, the school’s principal and special education teacher, my son’s second-grade teacher, and his aide filled the remaining seats.

We were reviewing my son’s IEP that had just been approved. After two years of providing our own DIY education for our son under a makeshift 504 plan, we hired a lawyer to finally get my son a formalized education plan and the protection that it affords him. It was clear as we reviewed the supporting documentation that we needed that protection because the system is not set up for children like him. It was even more clear as we reviewed his test results that they didn’t really know my son.

They made comments about his learning without fully grasping how hard he works when he is outside their walls. They made judgments based on a few hours of testing and observation but they didn’t really understand him or what he was going through.

When the special education teacher said that she had other kids with epilepsy, I cringed. “I had another kid with epilepsy” is like saying I’ve seen one shade of blue. The spectrum of what epilepsy is to a person is as broad as the hues and tones that make up every color imaginable.

This wasn’t the first time that someone at my son’s school generalized epilepsy. The one-size-fits-all seizure plan hanging in the nurse’s office is another symptom of the lack of understanding around his condition. Sometimes, having a little knowledge and convincing yourself that you know everything about something is worse than having no knowledge at all. So we did what we always do and explained how epilepsy is different for everyone and how it affects our son specifically.

We know that won’t be the last time we need to provide that explanation because awareness never ends.

There will always be a new school year.

A new teacher.

A new aide.

A new babysitter.

A new parent.

A new doctor.

A new nurse.

A new coach.

A new team.

A new boss.

A new colleague.

A new friend.

Every time a new person comes into our lives, it is an opportunity to help them understand my son. It’s an opportunity to help them understand epilepsy from the perspective of a child and a family living it every day.

It is not always easy. It’s not easy to retell the story of how epilepsy tried to take our son. It’s not easy to describe how hard he has to work every day or to explain how epilepsy is more than just seizures. But every time we do it, we create understanding. It makes the world around my son a bit more accepting of him and his condition. And, I hope, it creates a bit more understanding in the world for other children like him.


NEXT UP: Be sure to check out the next post by Clair at http://www.epilepsybumps.com/.

TWITTER CHAT: Save the date for the  #LivingWellChat on June 30 at 7PM ET.