Ezekiel, my three year old son who suffers from persistent epilepsy, slept between me and Breena last night. That afternoon he was laying on my lap when he had a major seizure. While he typically has a near-constant barrage of micro seizures (usually lasting about 2 seconds, occurring every 10 to 20 seconds), he hasn’t had a major seizure in several months, and to our knowledge, never while sleeping. But as he lay sleeping on my lap, his whole body began to jerk in a semi-rhythmic pattern. This was unlike anything I had ever seen him do before.
I called for Breena, and she came running downstairs. His eyes were open, but they were straining upward and to the left. A major seizure. We gave him a medicine called Diastat, which is essentially valium, and is designed to significantly slow the brain down, ending all seizure activity. Though he did seem to come out of his seizure, something else seemed to be going on, as well.
He rested his head on Breena’s knee, staring into the corner of the room. I moved my head into his line of sight, and it looked like he recognized me–like he was looking right at me. But as I moved my head away, his eyes did not follow. In fact, they didn’t move at all. Nor blink. What I saw terrified me unlike anything in all my life. I saw death in his eyes. For what felt like an eternity, they didn’t move or close. He just lay there, empty.
Breena screamed his name as I scrambled for the phone to dial 911. While I was fidgeting with the password, looking down, he came out of it. He blinked, looked around, and came slowly back to consciousness. Or whatever. From wherever. His right arm lay useless at his side, exhausted from seizing. But he seemed cheerful enough, at least for a kid who has just seized like crazy and been loaded up with valium. Breena took him to the ER where he eventually regained movement in his arm, and received the necessary drug treatment. Then they came home, and we continued on with our life, now with the burden of the knowledge that he can have a major seizure while sleeping.
I thought I had watched my son die. My wife and I are both convinced that, had he been in his bed napping instead of with me, he would have died. These thoughts weigh heavily on us.
But we are also lifted–lifted by the prayers of saints both here in our town, across the country, and all over the world. We feel that. We really do. And it gives us courage. The prayers of the saints and the support we receive from family and friends allows us to persevere through the hell of Ezekiel’s epilepsy. We have seen, and been the beneficiaries of, the kingdom of God on earth.
We continue to pray, of course, that God would heal Ezekiel, and we know that many around the world are praying this with us. God is good, and we trust him, so we’re asking him for the best possible outcome. And why not? The Scriptures tell us to approach God’s throne with freedom and confidence. Jesus said to pray with audacity.
So we do. And we wait. Some days we struggle. Others we thrive. Some days the disease wins. Others it doesn’t. Through all of it I’m reminded of the certainty of the hope we have in Jesus–the hope that we will one day, like Jesus, rise again from the dead to everlasting, full, whole, renewed life.
Life that will never be tainted by death or disease.
Life where Ezekiel is my brother, and where we can talk for long hours about the goodness of God and the beauty of life.
Life where we can sing praises to our God in beautiful harmony. (Something we could never do in this life, though not because he can’t talk or sing, if you know what I mean.)
Life where he can ponder the mysteries of creation, and where his steady hands can build a home, tall and strong.
Life where I will look into his eternal eyes and see…Life.
That’s my hope. And I have it because of Jesus. Come, Lord Jesus.