I can always tell when Ellia’s about to have an episode. There’s something in her personality that shifts and slows down, not in a calm way, but in a too-tired-to-move way. This past Wednesday, my anxiety level was high. Ellia wanted to lay down instead of watch the puppet show at the library. She preferred her blanket to actual human interactions, and she wasn’t even hungry for cake. Though I can sense it’s coming, I feel completely caught off guard every time her lab results require immediate hospitalization. Wednesday was no different. Here she was again—in the middle of a rhabdomyolysis episode, fighting against her own body.
After three years, I’ve become adept at taking an often nightly temperature and checking for leg pain and outsmarting Ellia when she’s afraid to tell me it hurts. I’ve become better at not crying when the IV goes in or when she first sits in her wheel chair. But I’ve never gotten used to the part where I pack the bags to take to the hospital.
As I pack clothes and toys, I get light-headed thinking of what we’re walking into—the pain, her questions about why I can’t make it stop. In some ways I’ve learned what to antipate. I know the sweet nurses and the friendly doctors who adore Ellia. I know Ellia will want to watch Gnomeo and Juliet in Spanish.
But my familiarity with the situation doesn’t eclipse the unknowns. I don’t know if we’ll be there two days or two weeks. I don’t know how her kidneys will respond or if her lungs will collapse. I don’t know how long it will be till she eats or takes a bath or gets to go to the playroom.
When I stand at home, putting toothbrushes into that stupid bag, I face my own deep fears. The known is terrifying and the unknown is almost debilitating. I feel so vulnerable when the dread and mystery meet in Ellia’s illness. Both are frightening. It’s frightening to know what kind of pain she’s in. It’s frightening to know her veins are masters at hiding. It’s unsettling to think of her lethargy, her emotional distress and mental distance and my own what-ifs.
I hate pain.
And if I’ve learned anything the past few years it’s this: there is no way we can fully prepare ourselves for pain. You can brace for impact, but you can’t stop it from hurting. Preparing for pain is a waste of time. We’re far better off embracing difficulty instead of padding against it through cynicism, escapism or control.
For the first year after Ellia’s diagnosis, I refused to embrace the pain. I wanted to escape. I wanted to avoid fear and anxiety, even if it meant rejecting the journey.
And in refusing to embrace the difficulty it became clear that I was forfeiting the potential to meet with God.
I’ve found that in those positions of flux, in the horrible disappointments, I usually have the greatest opportunity for a sacred encounter. It’s in the places I’m least likely to choose that I often meet with God. I don’t know if it’s because I’m more malleable or if God has a soft spot for suffering. All I know is when we’re stuck or hurting and our gut instinct is to run out of there as fast as we can, we are probably close to holy ground. It is in the very midst of our pain, the places we hate and the seasons of life we dread that God’s voice is most clear.
There’s nothing pleasant about the frightening unknown. There’s nothing great about deep loss and loneliness. Those things are just inevitable. The real gift comes in God’s willingness to turn our biggest challenges into landmark spiritual encounters—the kind of life changing ones, like Jacob’s wrestling match with the angel or Hagar’s conversation with the God who sees.
Will we have eyes to see God as we face the light-headedness that comes with pain and anxiety? I want to face the unknown and known and look for the sacred. I don’t want to embrace pain, but I do want to embrace God. I think I’m finally learning to listen—learning as I pack our hospital bags that God might be saying, “Take off your shoes. You’re standing on holy ground.”