From hopeless to hopeful when epilepsy raised its ugly head

By Jen Nelson

My youngest son, Michael, has high functioning autism and epilepsy, and when he was 5 years old he became fascinated by people doing good things to help others. When we went to church, he immediately noticed ushers and greeters in bright blue shirts. 

“How old do you need to be to wear the blue shirt and do that?” Michael would ask.

My husband Scott noticed a connection card, and following God’s nudge, he and Michael joined the hospitality team. My older son Andrew and I would save seats for them each Sunday.

Ushering was such a great way for Michael to practice connecting with others, such as making eye contact, saying good morning and getting people to smile. He loved his “special spot” for handing out bulletins.

After several months, Michael started asking: “When are you, Mom and big brother, going to usher?”

It felt like a “God wink” moment, when you stop and think: “That was God. That was the Holy Spirit.”

So we started ushering as a family and getting more involved.

Forming a church family 

Because we stood in the same greeting spot each Sunday, people started remembering Michael and Andrew. When they handed out bulletins, so many would say: “Thank you, Andrew. Thank you, Michael.”

Michael is 11 now and Andrew is 14, and we still serve as ushers as a family. At 14 nothing is cool. But I think Andrew secretly enjoys it.

Michael was diagnosed five years ago with Epilepsy. A common symptom of epilepsy are seizures, or abnormal activity in the brain.

During Michaels seizures, he’s not aware of his surroundings, and while he can move or speak, he is confused and unaware of what’s going on. 

One recently Sunday Michael had a mild seizure right before ushering.  It didn’t last very long, he recouped well, and even though he wasn’t 100 percent, he still wanted to serve. 

On a typical Sunday, Michael might be slow to hand out programs, he might not always smile. This Sunday, his hands were shaky, and he was off. But people were so kind.

We felt the love of God through God’s people.

Trusting God through the storms 

Over the last few years we have seen multiple specialists and tried multiple seizure medications.  Recently, Michael was having seizures almost every week. 

It was a scary time. 

Between the seizures and the medicine’s side effects, we felt frustrated and hopeless. Nothing seemed to work.

After service one Sunday, we were standing and talking to family members and our pastor. Andrew noticed Michael having a seizure, and we caught him before he fell. 

Pastor Ben put his hand on Michael and prayed for him. 

It was a surreal moment for me. Never have I felt God so much as that moment. 

When someone is experiencing a seizure, the best thing you can do is keep people safe. And I pray, continuously. When it’s happening, after it’s over. We ask God to keep Michael safe. And to keep our family strong. 

God always has. 

There are days when I have doubts. I think, “Will I be able to give it to God?” But I also know, the more we give it to God, the more God can work.  

Currently, for the first time in a long time, Michael’s seizures are controlled and we have found the right medication. We have a sense of peace, but we also know there will be more storms. 

It’s been such a journey. I have seen God turn what I once thought was hopeless to something so hopeful. I’m not scared anymore. 

I know God loves Michael, and he has worked through Michael to remind me that God loves me, too.

The more I open my eyes to God’s work, the more I see his love. Together, we can find joy on the journey.

Jen Nelson lives and works in West Des Moines, Iowa, with her husband, Scott and boys Andrew and Michael. Her family and friends have formed Team Michael to raise money for the Epilepsy Foundation.