On vacation this past week, our son Titus had a seizure.
Just writing that, I know that each person reading has a different understanding of what that means. Lots of us think of seizures as fairly benign, because they usually are. Some are freaked out by them. Titus has only had two seizures, both were this kind: status epilepticus. They’re not your typical seizure; they’re long, life threatening, and the mortality stats on them aren’t encouraging.
After the first one, which landed him in a coma in the PICU, we were on high alert for the possibility more would happen. But for over two years, things have been quiet. Until on vacation, when it was the farthest thing from my mind.
It’s hard to describe what Titus’s seizures are like without sounding like a real drama lover. It seems for those of us who really dislike drama, God has this way of inserting it into our lives, and forcing us to own that we don’t control how peaceful things are.
The simple fact is he looks like he’s dying, or even dead. His eyes are fixed, he’s not “with us,” he doesn’t move or have any faculties, and he stops breathing, which turns him the color of purple gray dusk. It’s not something I can put out of my mind by force. It just shows up there, in my waking sight. It’s there when I close my eyes at night, pressing on me.
Now is a good time to remember the all the positive stuff, like how he recovered from the seizure on his own this time, how it didn’t keep on, how he got checked out and was fine and got to come home, how it’s likely his meds have been working really well over the last couple years and an increased dose will help them to keep working well.
Those facts are a real comfort and they are worth giving thanks over. But they’re so superficial in the end. They don’t reach the deep places that need comfort.
Two days after the seizure, we were hiking along the rocks on the shore of Lake Superior in a thorough fog. The mist and ashy cloud was everywhere, and who could believe in weather as brooding as that, that the sun was out there, above it all, gleaming and oblivious?
There are times when this belief seems as far-fetched as a fairy tale. How can the sun be giving warmth and causing life, when all around is shadow and veil? Shouldn’t I feel it? Isn’t feeling it what makes it real? And that’s when the hot, life-giving rebuke of God sears:
“Have you entered into the springs of the sea,
or walked in the recesses of the deep?
Have the gates of death been revealed to you,
or have you seen the gates of deep darkness?
Have you comprehended the expanse of the earth?
Declare, if you know all this.
“Where is the way to the dwelling of light,
and where is the place of darkness,
that you may take it to its territory
and that you may discern the paths to its home?
You know, for you were born then,
and the number of your days is great!” Job 38:16-21 (ESV)
I must believe, am commanded to believe, that in our darkest haze, the light is unchanged. Because it is in our darkest haze that we stop straining for the earthly light of better circumstances, as if we understand what that would look like, and start leaning hard on the unseen Light that has already overcome the darkness. This is our only comfort in life and death. It’s that we belong, body and soul, to the Light. I do not wish for foggy days–gifts that they may be to my vision of God. But I do not wish them away either.
Never do I feel more keenly how much an unearned gift faith is, than in the fog, where no long views are offered me. It’s when we’re granted no long view, that we must exercise the faith that depends on the unseen longest view. Oh for the grace to believe when we have not seen–we have not seen healing, we have not seen relief, we have not placed our fingers in the holes in his hands, we have not seen resolution or an unsullied idea of the next twenty or thirty or fifty years. We have not seen it here, in this world. Yet, give us the grace to believe Christ is all and in all and there is a better world to come–this is my daily prayer.
“Jesus said to him, ‘Have you believed because you have seen me? Blessed are those who have not seen and yet have believed.’” John 20:29 (ESV)
Love you.
Kïrsten M Christianson
O Israel, hope in the LORD! For with the LORD there is steadfast love, and with him is plentiful redemption. (Psalm 130:7)
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I needed this. Praying for your son.
Thank you.
Beautiful truth!
Thank you for blogging…I have a special needs daughter and I’ve been searching for a blog for encouragement! I KNOW it’s not easy to find the time to do it, so from the bottom of my heart thank you, because I needed it.
Love hearing from fellow special needs moms. Grace to you as you care for your special child.