If you were looking for a deep commentary on the soon-arriving Mayan apocalypse, I hate to say that you will be disappointed. Instead, you are only going to hear why I decided to start a blog. The short answer is that it’s time to stop holding in all the struggles, all the pain, all the victories, all the wondering where God has been. To understand this, you need to have a little context, so here’s context.
The epicenter of all this emotion — victory, fear, joy doubt, pain, anger — is my daughter’s epilepsy and high functioning autism. She had her first seizure the day I got laid from one of my jobs (a day I will never forget), but my wife and I had really adjusted to life with epilepsy. Cynthia had 2-3 seizures a year, all fairly similar, and we typically didn’t even have to go to the hospital. Her autism continued to create problems, but our family was able to manage. Then April 2010 happened and everything changed.
For reasons we still don’t understand, Cynthia’s seizure activity dramatically increased. By increased, I mean we moved from 2-3 a year to multiple in a single day. Talk about crazy! Fast forward a few years, and not much has changed. We’ve had multiple hospital stays, various epilepsy medications, amazing physicians, and rarely a seizure-free week.
The emotional toll of this shift on my wife and I has been overwhelming at times. We talk about out lives before 2010 as if it was a movie, or someone else’s life.
We count a three day break from seizures as a victory. We struggle with decisions that would be simple for other families, like should we let our 10-year-old daughter go to the bread aisle in the grocery store by herself — what if she has a seizure? We cry out to God, wondering how He has brought physical healing to so many — even using us in miraculous ways — but won’t heal our daughter. We get angry with well-meaning followers of Jesus who tell us that our daughter has seizures because we don’t believe enough, because we have sin in our lives, because we haven’t prayed the right prayer.
And most of these struggles have been lonely. Don’t get my wrong, we have friends who care deeply for us, for our daughter, for our family, and hear our pain. We have family who will do anything for us, any day, any time. But until very recently, we didn’t have anyone who understood what we were going through, the worries we had that nobody else did over simple things, easy decisions. Then through
happenstance God’s kindness I reconnected with a college roommate who is married to an epileptic. I saw through talking with him that our struggles are not unique, and I found strength to push forward through his example. When my daughter had a BIG seizure, I talked to him about how I totally freaked out and felt stupid for it because Cynthia has had 1000’s of seizures, and he shared how he did the same thing the last time his wife had a BIG seizure. And in that moment I realized…we are not the only people dealing with these things.
Then I realized something else…we were probably not the only ones who felt alone, who are just convinced that nobody could have to deal with the gut-wrenching disappointment that comes with loving an epileptic, the faith struggles of trying to stay faithful to a God who seems absent, the confused looks from loved ones when we seem overprotective.
So I started to write. Some part of this blog will be me reaching out to find hope from others when I can’t find it myself; some will be recounting my joys over victories (my daughter’s, my family’s, or my own); some will be encouraging thoughts I have about keeping faithful to my God during the dark times.
Now it’s your turn. Let’s stir up hope in each other. Do you have a loved one who has epilepsy or autism? How do you stay strong when the world seems to be crumbling? I’m looking forward to getting to know some of you as we journey together.