Last week was rough and it culminated in one very difficult night as I was preparing to leave town for 24 hours and dealing with everything necessary to do that while also making sure Steve has round-the-clock care. I wrote this on Friday night and I’m only sharing it today because we are -thankfully – on the other side of it and feeling so much better and stronger now. I think it’s important to tell the dark parts of the story, too.
I’m sitting here in bed tonight, listening to Steve struggle for breath, and struggle harder still for hope and it is almost more than I can take. We have each felt beaten today. This morning I complained to him about how I need a break, a bit of time away, a good night’s sleep. I regretted my words almost immediately and then I went for a run and replayed them in my head for 3.74 miles. Tonight I feel suffocated by my own inability to get this right. He feels suffocated by his own body and a sickness that is cruel beyond telling. We are a sorry pair.
I’ve written a lot about ALS, pointing to the beauty buried in the soil of this battlefield, but tonight it’s hard to see it. It’s hard even to see my hand in front of my face – everything is inky black and there is no sign of sunrise. I keep thinking of the thief on the cross, suffering the cruelest death, discovering the promise of a home in paradise, and then hanging there in the dark for three hours. I can almost see him – suspended between the end and the beginning; fighting for every breath and wondering if the promise was true. Would this death end in life? I feel like we’re living our three hours of darkness. So the truth I cling to is this: Even though the thief couldn’t see Him, Jesus was very near; just one cross away. He is surely in our dark too. He is intimately connected to our suffering and infinitely aware of all the ways we are gasping for hope and strength to keep fighting this battle.
On the beaten days, faith is all I’ve got. I’m not a single bit tempted to toss it out and go it alone. The amount of muscle and ingenuity I have to bring to this battle on my own is laughable. He is my only hope.
Since I started writing this, the medicine I put through Steve’s tube an hour ago has begun to work and his breathing sounds better. He is drifting to sleep and I am praying for rest to sink deep into his bones and into his heart and into his hope. And I’m trusting the only One who can see in the dark.
As I said, we are better now and we are thankful. If you would like to shoot a prayer up for us, we are looking for some help with Steve’s care at night and it’s not an easy spot to fill. We’d love prayer for supernatural fitting together of the pieces we need to walk this road with grace and joy.