Emma's Life with Pulmonary Atresia

I took my time getting ready this morning at the Ronald McDonald House. Funny, I know with a sick daughter ten floors up, one would think I would hurry, but I needed some normalcy. I needed to feel human. Typically I poo-poo the grooming process, thinking it a waste of time and almost scorning the very worldliness of it. I mean, if God looks at the heart, why should I care what I look like on the outside?

That discussion aside --  today I’m thinking about the routine of it all. The familiarity. I know how long and how to specifically hold my hair, head and blow dryer to get the exact curl I want. There’s a comfort to it. A knowing. 

And then I think of Emma Grace. She is at the opposite end of the spectrum right now. There is little comfort for her. A group of grown men came in last evening to look at her, study her. They kept their distance, but here’s my daughter, naked but for a thin sheet, one arm strapped down to keep her from pulling out the line coming out of her neck, steri strips covering where the surgeon cut her open, tubes going every which way. No, no routine there. 

And much to her dismay, she’s watching Sponge Bob, which she refuses to watch at home because some friends told her it makes children stupid. She just doesn’t feel up to asking the nurse to change the channel. 

I forgot to pack my deodorant. I’m fairly certain I don’t smell, and I did shower this morning. But because I forgot one thing out of my routine, I feel off. Not off as in horrible, but off as in just this side of not right. Then of course I think of Emma Grace. How off she must feel. Must be my offness multiplied by 1,000. That makes me sad for her.

As I was sitting at Starbucks this morning, watching the train-thingy (I’m not sure of the official name - such a suburbanite.) drop off nurses, doctors and other medical staff, I was struck at how I am simply a cog in the machine. One of the thousands of moms at the medical center today. Moms yearning for healing for their children. Moms wanting comfort. Moms feeling helpless as all they can do for their children is offer ice chips. How out-of-routine. 

But it is in the steps of the doctors, the confidence with which they leave Starbucks, coffee in hand, exit the train-thingy, knowing which way to go -- that pacing, that rhythm, the familiarity the nurse has with Emma Grace’s tubes and beeps and cording that is comforting to me. God has sent them to take care of Emma Grace when her father, her mother, and her friends clearly could not. We are sitting on the sidelines right now. And that is hard. It’s definitely a study in my vulnerability and God’s strength. 

Emma Grace is making small but steady strides. Tubes are slowly being removed by her nurse. An EKG came back normal. Her vitals are good. She’s quite grumpy because she is uncomfortable and wants to go home, she tell us, and I don’t blame her. I do too.This is not our normal, but we need to let her heart get used to its new valve, its new pacing, its new routine.