The Fight

Who do you fight for?

What do you fight for?

I think about these questions from time to time.

Plenty of people I have worked with have been motivated by money. They liked living a certain lifestyle, driving a certain car, or having a certain type of house.

While my own motivations have changed over the years, the past eleven years have been primarily about keeping someone alive.

In March of 2013, after years of struggling to have a child together, my wife and I had our first son. 2013 went as well as we had expected.

At ten months old, our son had a seizure. Knowing that plenty of kids have febrile seizures, and given that it was a singular event, we were on guard but not too worried.

A month later, he had another. Queue the worry. Two weeks later, more. Now it's a panic. Days later, even more - crisis! By his first birthday, he had a full diagnosis of epilepsy, and a prescription to go with it.

We tried one medicine, which did nothing more than make him cry and scream for days straight (not even exaggerating). The next medicine slowed the seizures a little. It didn't take long before we were increasing dosages, and then adding another medicine.

It was early on that I started fighting with my insurance. They didn't want to pay for his medications. They questioned his tests - MRIs, EEGs, you know, the expensive stuff. At some point, they wanted to stop paying for his meds altogether. They would come up with excuses like, "that medicine can't be compounded," (crushed and turned into a liquid) or "that medicine had no clinical trials on children under 16."

The worst one we ever heard from insurance was "that isn't a live-saving drug." I can't even begin to express to you my frustration with that statement.

We had to ask for letters from doctors. We had to bug them to fill out forms. We had to pay retail for medicine. $900 a month.

The frequency of his seizures went from bad to dangerous. There were times where he might have had seizures, one after another, called clusters, all day long. In his first year, we had started to medically sedate him to stop the clusters of seizures. There were weeks where he was awake for only 4-6 hours in a 24-hour period.

In time, we added a third medication. This new medication wasn't intended for unidentified seizures, so insurance didn't want to pay a penny. Oh, and retail is $3,000 for 30 days of medicine - I kid you not. There was no generic.

This began a new phase of constant battles with various parts of the medical industry. We begged for assistance from the pharmaceutical company that made it. When that dried up, I had to start a GoFundMe. Every penny I made was going to keeping our son alive.

The third medication did the trick. Within two days, his seizures disappeared. They were under control.

When you go from constant seizures to nothing, you spend days, weeks, months, years waiting for it to flip back into a non-stop crisis. But years passed, and his seizures were controlled.

In time, we weaned him off of his first medication, and later his second. He's now solely on his third medication. A few years back, the medication was allowed to be made as a generic - $300 a bottle. Insurance? Not even a hesitation in paying for it. All those hours of fighting, arguing, and crying are mocked with how easy it is to get his medication now.

Over the years, we've burned up savings, begged for money, borrowed to pay for the essentials, nearly lost everything, put our own health in jeopardy, and worked long hours just to make the money needed to stay afloat. The constant battle... it leaves a mark on your soul.

Today, it puts things in perspective for me. Yes, I fight for my family. I fight for my wife to stay home and raise our son. If she worked, we'd spend everything on his care during the day. I fight for our other kids to have some semblance of a typical childhood. And we do it together. We do it with love. I wouldn't have it any other way - side by side with my wife, and our kids standing at our flanks.

It's not easy, by any means. I doubt it ever will be.

The fight is.. the fight. We don't know what else to do but fight.

What do you fight for?

Who do you fight for?