The Gift of Epilepsy - Christian Fitness

The Gift of Epilepsy

Probably the best book I’ve read on love and relationships is Gary Chapman’s The 5 Love Languages. This masterpiece sheds so much light on why and how we give and receive love. There’s a reason it’s a perennial best-seller and has a five-star rating with nearly 40,000 reviews. 

In the book, Chapman explains that there are five primary ways people speak the language of love. We don’t speak them all equally. In fact, there is one, maybe two, we speak natively. The others we speak occasionally, or not at all.

SPOILER ALERT!

One such love language is gift-giving. Maybe you know people like that? They give you presents big and small, planned and unexpected, creative and thoughtful.

Or maybe you are someone like that? I know I am. I struggle with some of the other languages, but I am fluent in this one.

The essence of gift-giving, for me, is really just showing someone that I’m thinking about them by trying hard to give them something they’d really enjoy. They were on my mind and I wanted to find them just the right thing to make them feel special.

I receive love that way as well. I can remember vividly where I was standing when Kim randomly bought me Season 1 of my all-time favorite TV show (Northern Exposure if you’re curious). If asked what my favorite gift each of my kids have given me, I have little trouble figuring it out.

Again, it’s not about the gift really. It’s the time and thought. The effort and love behind the gift resonates deeply within me.

Sometimes though, the effort is sorely lacking. And it’s obvious. It’s like they pulled something out of their glove compartment and wrapped it. Ever get one of those? 

“Uh… gee, thanks. I don’t know what this… Or why I… or anyone, would ever want it. Or why you didn’t keep the receipt. But hey, I’m sure (wink wink) you put a lot of thought (wink wink) into picking this out for me. So… thanks?” 

Regardless of what love languages you speak, we’ve all been on the raw end of that deal.

Kim and I felt like we got one of those, just this past summer.

As it was for everyone else, the first half of 2020 had been hard with the pandemic restrictions and chaos, riots, Zoom, work changes, and all the rest. But honestly, we felt blessed to not be suffering more than we were. The ways other people were.

Our income was stable. Loved ones were safe. Kids’ school navigated the changes beautifully. We had even managed to get in our annual trip to South Carolina.

But everything changed in late June. One morning, our 8-year-old, Silas, was eating breakfast, when one of his sister’s heard a loud bang. She found Silas on the floor crying and speaking nonsense and unable to stand. She rushed to get me. 

I ran downstairs to see what happened. Silas was upset and confused. I prayed over him and held him until he calmed down. 

I then moved him to a chair, called his pediatrician and took all the appropriate protocols. From the best we could discern, Silas had fallen out of his stool and hit his head. We thought it was a mild concussion. 

It was strange and gnawed at me a little, but nothing for which we should be overly concerned. Accidents happen all the time.

Then on July 4th, Kim found him on the floor of his room disoriented. Tired. “Off.” 

We touched base with the pediatrician who quickly confirmed that his first fall wasn’t just a random accident. Silas had epilepsy. 

Suddenly, a pit burrowed deep into my gut and it has been there ever since… coming up on seven months now. 

We’ve seen multiple convulsive seizures, various partial seizures, and countless absence seizures. 

He has seized at school, at cross country, in the car, at home, at church, and at the store. 

Laying on the couch. Playing on the floor. Sitting. Standing. Walking. Riding his scooter, shooting baskets, throwing the football, and spinning Beyblades. 

He’s had various seizures doing nearly everything he does, wherever he does it.

Silas has had an MRI, multiple EEGs, including a weekend in the epilepsy monitoring unit, tried five different medicines, and is currently on a cocktail of four of them, both morning and night. 

Anytime there’s a loud noise or bang, our hearts stop for a second.            

Anytime we get a call from school, our heart stops.

Anytime Kim calls me on my phone, my heart stops.

If I call for him and he doesn’t answer, my heart stops.

He can’t go outside unsupervised. Sleepovers are exceedingly rare. We walk around with seizure rescue medicine, just in case. Any prolonged pause in his response or speech, we are on edge. 

Epilepsy has changed our world for now. Like COVID, it wasn’t remotely on our radar. Yet here we are. 

Not only do we not understand it, we HATE it. 

It’s nagging. 

It’s heartbreaking. 

It’s inescapable. 

We have to take every thought captive when we are attacked by waves of fear, anxiety, or questions of God’s goodness.

So, it takes great effort to even consider that there could be a bright side. In times like this, it’s tempting to abandon fruitful, positive processing in favor of bitterness or escapism. 

However, one of the antidotes to pessimism (Things will never get better!), pity (Why us Lord?), and pride (We don’t deserve this.) is gratitude. 

With that in mind, here are a few items on my ever-growing list of big and small gratitudes for the “gift” of epilepsy:

  • That God has uniquely gifted Silas to deal with it.
  • We have access to medicine and doctors.
  • Teaching us the discipline to number our days, taking them one at a time.
  • We are surrounded by family and friends who love and pray for us.
  • We have a greater awareness to be thankful for the mundane, uneventful times.
  • Silas has quickly learned how to swallow pills.
  • I have sensed that our Father shares in our sadness over Silas’ epilepsy.
  • Kim’s gift of administration and attention to detail to track the timing and dosages of all the medicines, managing the various appointments, and sorting through the math and jargon on the bills from insurance has been indispensable.
  • Silas’ sisters are developing a deeper sense of compassion and love for Silas, while also learning some of the things on this list.
  • We have a better awareness of the fragility and brevity of life.
  • For an amazing school that looks out for him and takes precautions for his needs.
  • I have an even greater appreciation for Silas’ resilience and indomitably happy spirit.
  • We have a growing compassion for the millions of others who suffer from epilepsy or other seizure-causing disorders.
  • God has given us the wisdom to not allow epilepsy to define Silas’ identity.
  • I have an authentic empathy for those deal with paralyzing anxiety.
  • A sense that the pure and unbridled love I have for Silas during the moments of his seizures is how the Lord loves us all the time.
  • Immensely glad that epilepsy is far harder on Kim and I than it is on Silas.
  • Grateful that the MRI didn’t reveal something worse, like a tumor.
  • Silas’ example of joy in spite of epilepsy convicts me of my lack of joy over far less life-altering setbacks.
  • I have a better understanding of God’s profound grief over this broken world.
  • This is a tangible example for our kids to see their parents having a faith that perseveres under trial.
  • We have the financial resources to pay for expensive medicines, exams, and doctors.
  • God has given us the wisdom to try to keep Silas’ life as normal as possible, with extra curriculars, sports, friends, and events.
  • This has given us the opportunity to give God thanks in all thingspraising Him because His love endures forever, trust in His sovereignty, and in so doing, let our light shine bright for His glory.
  • And through it all, Silas has only grown more interested in God. So much so that last fall, Silas accepted Jesus as his Savior and will soon follow in obedience in baptism.

You see… there’s a lot for which to be grateful, much of which may have not occurred without epilepsy. 

Even still, it’s hard. I’ve cried more in the past seven months than in the previous 37 years combined. 

My heart breaks when I tell my boy that he can’t climb the tree like the other kids. 

Our hearts sink watching him take four different medicines, feeling like we are drugging our son, nervous about the long-term effects these medicines could have. 

Waves of sadness rush over us when we’re playing a game and he stops, his eyelids droop, his head shakes slightly, and he goes silent for several seconds during an absence seizure. And like the ocean, those waves crash over and over and over again.

And only on my best days, am I wise enough to stop to remember a few of the items from the above list.

But I also know that there is grace for my struggle. 

Grace that doesn’t judge or condemn me. 

Grace that joins me in my sorrow. 

Grace that will never leave or forsake me.

So what does all this have to do with gifts?

Well, I have a suspicion that one day, I will honestly, from the heart, thank God for epilepsy. I’m not there yet. Right now, the gratitude is only in my head because my heart is too full of pain.

But in a way, even that can be a positive. We shouldn’t be led by our hearts in the first place. Facts come before feelings

And the facts are that God works all things for our good.

He doesn’t make mistakes.

The Lord disciplines those He loves.

And that He knows us better than we know ourselves.

So if all that’s true (and it is) then I long for the day when I “open the gift of epilepsy” with a pure and grateful heart. 

He will have spoken my love language. 

And I will ecstatically receive what our most generous Giver picked out for me: the perfect gift.

“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.”

– James 1:17