Some days it's incredibly hard not to feel hopeless.
Each morning we let him hang in bed for awhile, usually with his iPad, while we get our coffee and maybe peek at the news. If we have the stomach for it. Since his relapse, mornings and naps the the only times of day he doesn't have one of us with him. Even those two precious hours are difficult for us to relax. Epilepsy doesn't punch out for a lunch break.
This morning is an example of why.
We were getting around for church while he stayed in bed with his iPad. He came downstairs looking seizure-y and expressing how tired he was. He's always tired lately. He headed straight to the shower, which is not all that unusual. That was when we discovered that he wet himself. Not a little dribble, but like his bladder released.
Of course, we don't know for sure because we dared to grab a cup of coffee while he stayed in bed, but we can make an educated assumption that he had a seizure. It must have been larger. It's the first time he was incontinent with a seizure event.
It shredded us; it's hard not to feel hopeless.
We don't share every negative thing that happens, and trust me, this week had its fair share of non-epilepsy negativity. I want to focus on the joys more than the sorrows. I fight to keep my heart and mind out of the dark places. I try to honor that we all walk through difficulty. But I believe in living honest. Honesty is sometimes radiant beauty; sometimes raw pain. And while we all walk through difficult, some journeys are far more difficult than others. It isn't indulgent to acknowledge variance. It's honest.
I think that's why this passage from our nightly Chronicles of Narnia reading struck my heart with deep poignancy.
"Jewel," he said, "what lies before us? Horrible thoughts arise in my heart. If we had died before today we should have been happy."
"Yes," said Jewel. "We have lived too long. The worst thing in the world has come upon us."
They stood like that for a minute or two and then went on.
-- The Last Battle
We're stuck somewhere between acknowledgement of the dread in our hearts and moving on.
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