Skewered on my own eloquence

Three weeks ago (has it been so long already?), I gave a retreat presentation on music and spirituality. During it, I spoke of music as a way to help us express the whole range of human emotion—both positive and negative—in a prayerful way. The example I used was “Hold Me, Jesus,” by Rich Mullins.

It’s a great example of praying through pain and difficulty. The trouble is that, like everyone else, I’m more willing to philosophize about it, in the abstract or after the fact, than to embrace it when it smacks me upside the head. This morning, Mass felt like God knocking on my head saying, “Hello? Kate? Are you listening? Every branch that bears fruit, I prune so that it bears more fruit.”

Well, God, I feel the pruning shears, but I’ve got to be honest, I’m not grateful. Not yet, anyway. The way I see it, you keep piling things up till I think I can’t possibly hold any more. Why now, just when we thought we were coming to the end of the worst busy-ness and stress? In the middle of planting season and the end of legislative session, so my parents can’t come, and right around that storm that tore the heck out of Southern Illinois, so Christian’s parents can’t come? When there’s a reception after work on Monday, so Christian has to stay late? When it’s the end of the school year, so we’re feeling pressured to figure out how to have lessons, so we can actually have recital on Friday?

Every night, I go home and spend the entire time making phone calls figuring out what to do with Alex the next day. I have to shunt him from one place to another. Not that I’m ungrateful for the help, mind you, but I feel like I’m neglecting him. Okay, let’s be honest, I am neglecting him. It’s the nature of the beast. Right now, there are two other kids who need me more, and that’s just how it goes. But it’s one thing for it to last a couple of days. A couple of weeks at the bottom of the totem pole? This can’t be good for him. And I am sick and tired of not being able to spend time with my husband! What a sucky Mother’s Day! And what the heck is up with this gorgeous weather that I can’t enjoy because I’m stuck in the PICU?  And why does Nicholas have to pick this time to decide he just doesn’t care to eat?

Condensed like that, it just sounds whiny­—even to me. I should be grateful that Julianna’s not fighting for her very life; that we have such great friends and family who are inconveniencing themselves to help us; that I have a husband who will sleep in the PICU so I can sleep at home with Nicholas… But I keep staring down the barrel of another week in the hospital, knowing that homecoming is not going to mean the end of the hospitalization-related stress. However well-behaved Alex is now, there’s going to be a backlash later.

In this context, the song is all the more apropos. At least I can admit it, even if I’m not ready to pray it.

Hold Me, Jesus/Rich Mullins

Sometimes my life just don’t make sense at all
When the mountains look so big and my faith just seems so small. 

Hold me, Jesus, ’cuz I’m shakin’ like a leaf
You have been king of my glory; won’t you be my prince of peace?

And I wake up in the night and feel the dark
It’s so hot inside my soul, I swear there must be blisters on my heart

Hold me, Jesus, ’cuz I’m shakin’ like a leaf
You have been king of my glory; won’t you be my prince of peace?

Surrender don’t come natural to me.
I’d rather fight you for something I don’t really want
Than take what you give that I need.
And I’ve beat my head against so many walls,
I’m fallin’ down, I’m fallin’ on my knees.
And the salvation army band’s playin’ this hymn,
And your grace rings out so deep, makes my resistance seem so thin

Hold me, Jesus, ’cuz I’m shakin’ like a leaf
You have been king of my glory; won’t you be my prince of peace?


Christian tells me I need to update. Let me add to the story of the medieval torture device. It’s actually a “bi-pap” not a “c-pap,” and I was here during the spiral down into chaos that ended in the mask being strapped around her head. It looks like a Hannibal Lecter thing. Literally. And Julianna took it as such. I was sitting on the PICU crib, lying across her legs, holding her hands down, while she shrieked in panic and hurled her head around, trying to escape. I kept asking the RT (respiratory tech) if I was in the way, and she said “No, you’re doing fine.” That is, until I became vaguely aware that there were people all around me. “Should I get out of the way?” I asked again, and this time someone said, “Yeah, why don’t you step out for a minute?” It wasn’t till I stepped back that I saw there were six people working on my daughter. A crowd in an ICU room is a bad sign. I freaked out. A few minutes later I was crying.

This morning after Mass, when I came into the room, she was just waking up. The staff was preoccupied with a screaming patient next door, so when the noise woke Julianna, I was flying solo to try to calm her down. She fought the mask, she thrashed and panicked some more, I soothed her to sleep, she woke up and we repeated the procedure. And then she put her arms out to me. I started to gather her up, but the tubing and joint on a bi-pap are much less secure than I realized, and suddenly this pressurized thing fell apart. Sensing imminent victory, Julianna threw her whole body into the fight. And won. Dr. Downs came in (yes, ironic as it is, that is his name) and removed the bi-pap. So now we’re back to the forks in her nose (I’m sorry, as much as my medical vocab is expanding, I haven’t got that one in my head yet, it starts with a C and sounds like Calendula, but I can’t get the whole thing right). And now we’re waiting for her breathing rate to slow down so we can start giving her food.

Dr. Downs came in a while ago and leaned on the crib rail, studying her and the numbers. Then he said, “Little girl, you’re just gonna keep limping along till you feel better.”

That about sums it up.

Update as of 3:45 p.m. We’re back on the bi-pap, and talking re-intubation. The staff thinks we extubated too soon.