Learning My Little Boy Has Epilepsy—And Its Unexpected Gift

It wasn’t quite the Christmas present we would have chosen. But it has impacted our family in a way we could never have expected.

A few months ago, we were enjoying Christmas Eve service, sitting at the front of my parents’ small colonial-style church in rural Virginia where we were visiting for the holiday. My then-10 year old son was cuddled up next to me for most of the service; then we stood for the last hymn.

I felt an odd movement and gasped in shock. His face was contorted in a terrible, rigid, gaping expression, and his whole body was beginning to shake where he stood. I cried out, “He’s having a seizure!” and the church came undone. Medical personnel (including my mom) rushed toward us as we grabbed him before he hit the ground and laid him across the lap of my husband, Jeff, so he would not hurt himself on the hard wooden pew.

He wasn’t breathing. For nearly two minutes he shook so violently it rocked Jeff and the pew. There was nothing we could do. We were all terrified, and his 13-year-old sister was panicked. My parents’ traditional little church might have heard a few louder-than-usual prayers as Jeff and I desperately cried out to God for our son.

Eventually the shaking stopped and he slumped in Jeff’s arms. He was unaware, his head lolling, staring, his face very white, unable to speak, and mentally “not there.” That was just as scary as the shaking.

We managed to get him to a local volunteer ambulance, which sped along the dark country roads at 85 miles per hour, with Jeff and my mom riding in the back with him—and with me trying to follow as closely as I could in our minivan. Praying there would be no deer on the roads.

And the whole 30-minute journey to the hospital, we were in the dark. More than just physically. The nearest town with a hospital was also the nearest town with a cell phone tower, so I couldn’t call Jeff to find out what was going on. All we could see, through the window in the back of the ambulance, was my mom and the other medic working feverishly around the small form strapped to the gurney.

Beside me in the minivan, through her tears, my daughter prayed out loud for much of the rocketing, tense journey—and this is a girl who will certainly pray, but is usually much more reserved with her words.

This is also a girl who, until 5:52 p.m. that Christmas Eve night, had been getting more and more annoyed with her little brother over the years. Exasperated sighs had been the norm. Bickering and frustrated outbursts were common. In fact, although our son certainly wasn’t blameless (he knew how to push her buttons!) our daughter’s lack of grace with his immaturity had been worrying us for years. Nothing we said or did—no incentives, no corrections, not even prayer—was making a dent in her heart toward him.

In fact, a few years earlier when we had explained baptism to her—that going down into the water and coming back up represented burying the old self and living as a new person who followed Jesus from then on—she looked at us for a minute, with almost an appalled awareness coming over her face. She blurted out, “But that would mean I would have to be nice to my little brother!”

Yes, she understood the cost of following Christ.

And she hadn’t been living it.

But suddenly, this Christmas Eve, she saw that she could lose her little brother. And it changed everything. As my fairly reserved daughter cried and prayed aloud next to me, I saw her love for him as clearly as if she had shouted it. Weeping, she also confessed that she had been frustrated with him for “crowding her space” during the service and had elbowed him several times—including when the seizure started, since she initially thought it was just another attempt to annoy her.

“Did I cause this?” she sobbed. I reassured her that no, of course she didn’t, but it didn’t make a difference to her tears. She wasn’t just scared for her brother, she was convicted of her hard heart toward him. Her repentance was deep and real.

And so was our relief when we arrived at the hospital and learned he would be okay; he was weak but back to himself mentally.

A week or two later, after multiple neurologist appointments and an EEG, we got the official diagnosis of epilepsy. Since then we’ve entered a new world of anti-seizure meds, worries over side effects, the impact on his ability to study and concentrate in school, and having to carry around an emergency suppository syringe everywhere we go. (I haven’t had the heart to tell him what “suppository” means yet…)

I know this is nowhere close to what many families with special needs children have to deal with. But it has been a new world for us. And yet, I see how God has used it.

I watch my daughter regularly hug her brother—not done since she was 6 or 7 years old. I watch her tenderness with him and her patience with his foibles. I see her irritation with him rise up—and then her conviction return. Her awareness of what she could have lost—of what we could have lost—and her gratitude that her brother is still here. I see her love for him.

I would never have chosen this path as the answer to our prayers for her heart. But it is truly a great example of what was meant for evil, being used for good. We are praying every day for God to heal our son. But we are grateful He has healed our daughter’s heart.

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2 thoughts on “Learning My Little Boy Has Epilepsy—And Its Unexpected Gift

  1. A great perspective, Shaunti. Not what you would have chosen, yet you see God at work. Praying you never need to use that syringe.

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  2. Shaunti, my preschool daughter had a seizure last week, no convulsions but totally ‘zoned out’, couldn’t speak or make eye contact for about 20 minutes (doctor said likely a ‘febrile seizure’). I searched the MomLifetoday website for ‘seizure’ tonight, as I can’t sleep and replay the events in my mind. It was scary because we were afraid we could lose her and didn’t know what was happening. I am so thankful to the Lord for protecting her and that she is back to herself again, as we didn’t know if our lives were about to radically change. It is still so fresh and I am struggling with worry. This is my spunky, adventurous, extraverted girl who I usually don’t worry about, because somehow by God’s grace she always ends up safe even if she’s doing something daring. But now, I feel the need to be hyper vigilant of any symptoms (headache, stomach) that might lead to the onset of another seizure. Thank you for sharing your story and ‘being here’ for me tonight.

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