April 19, 2015 by Kristin
“That was ideal!”
“I wouldn’t say that.” Todd said.
Viruses and ALS do not mix well. Todd can’t turn over in bed, so there is little relief from sinus pressure. He can’t get himself out of bed, so he’s unable to run to the bathroom in the middle of the night.
These facts have turned me into a hand-washing fanatic—one hundred times more so than when Sara was a brand-new baby. We vet people’s health before they visit us. If I forget to bring the hand sanitizer to church, I make a beeline for the bathroom to wash my hands after the meet and greet—my anxiety is palpable. I have Sara wash her hands and change her clothes as soon as she’s home from school. We do our best to avoid colds and stomach bugs, for Todd’s sake. He has weathered a few colds but he avoided stomach issues until this weekend.
Todd woke me up at 2:30 in the morning. It could have been a messy situation. Todd is dependent on me to transfer him with slings and overhead lifts. I can only move so fast. Nonetheless, Friday night the timing and transferring worked flawlessly. I got him to the bathroom in time. I got a bowl from the kitchen before he even knew he needed it. A gait belt attached to our overhead lift supported Todd while he sat in the bathroom and leaned over a bowl I held in front of him. The kids were at a sleepover at my parents so they weren’t woken and we could sleep in.
One of my big fears—Todd getting a stomach bug—came true and we weathered it well. I shook my head in amazement. I was filled with gratitude and relief.
I can’t comprehend God’s sovereignty in light of all the suffering that takes place in the world. I passionately hate ALS and I passionately love Todd. I believe God feels the same so I don’t understand why he doesn’t provide a cure for this wretched disease this side of heaven. Not just for Todd, but for all those suffering.
As for me and God, I pray angry prayers much of the time, because with this disease, there is no cure for the caregiver either. Like many caregivers of people with ALS, I feel overwhelmed and battle depression. If God’s not going to intervene with an ALS cure then at least he should give me supernatural strength. “Go to God in prayer,” I’ve been told, “and he will give you love, joy, and peace.” I go to him, but much of the time, I don’t feel God’s comfort. I relate to the Psalmist who said “But I cry to you for help, O LORD; in the morning my prayer comes before you. Why, O LORD, do you reject me and hide your face from me?” (Psalm 88) I find a bit of relief in knowing I am not alone. Forty percent of the Psalms are laments. I lament to God and I pray The Lord’s prayer, “Thy Kingdom Come.”
Life down here is hard. This world is broken and people suffer in ways too much for the human soul to handle: abuse, starvation, disease, early death.
At times, I sense God’s presence and protection in our lives. I was biking with the kids the other day when Sara lost control of her hand brakes on a steep hill. I watched with horror, helpless as she picked up speed. She dragged her foot and lost shoe rubber, slowing herself down. She made it down the hill unscathed and I was so grateful. I praised God.
Friday night, after our ordeal went smoothly, I used words like “ideal” and “excellent” to describe the experience. Todd looked at me like I was crazy. “He’s the God of little miracles,” Todd joked. The God who doesn’t heal him, helped us through a night of sickness.
It is puzzling to me that we only sense God showing up some of the time and in some ways, but I guess that is the reality of living in a broken world. I pray for physical healing for Todd this side of Heaven as Todd’s body gets weaker. I pray that I would be able to shake the cloud of sadness I live under. Healing this side of Heaven seems elusive.
God did the biggest miracle when he came to this earth in human form, when he died and rose, so that one day, we will not need to endure this broken world. In the meantime, I pray “Come, Lord Jesus.”