It’s been one week since Julianna woke up with the frog that turned into a cold that sent us into a tailspin but ended up being a miracle. This week, we were scared, so sad, then determined, incredulous, thankful, joyful – and busy.
It was a lot. It has been a lot.
It has also been unexpectedly easy. Julianna is almost over her cold, and it hasn’t been the scary, round-the-clock ordeal that we imagined. We have all, in fact, actually gotten more sleep than usual.
When you have a medically fragile house, “easy” is not your usual modus operandi. Your lives and routines are complicated. You are always vigilant lest the other shoe drops. It’s no wonder we don’t sleep very much or well.But if we follow Julianna’s lead, things don’t really have to be that difficult. Life is not always easy for her (she admitted this week she was scared of this cold), but she spends her energy on things that are fun and happy and beautiful. She makes life look easy.
So in the spirit of easiness, I am not going to toil too long over this blog post. This is a bunch of random, mixed-up moments that I want to remember forever.
An ultimatum, Julianna style.
Julianna often wakes up too early. We try to coax her into staying in bed until at least 7AM. We turn on soothing lullabies, smooth her blankets and kiss her forehead. Most of the time it works, but one morning last month, it didn’t. She was still half asleep when she said this, but her intent was clear.
J: (to Steve) If you don’t get me up, I’ll put a sparkly bow on you.
A good historian:
In medicine, a good historian is someone who can succinctly deliver pertinent information. Julianna is one of the best.
A few weeks ago, J demonstrated her mastery of the pain scale, and showed her stoicism too:
J: My left arm hurts. It’s a 5.
M: Julianna, what does a “5” mean?
J: You don’t cry at a “5.” It means medium. Less than a lot.
M: When do you cry?
J: A “10.”
We gave her Tylenol that night, and the next morning, J declared her pain level to be “zero.”
The Quality Time Enforcer
J stopped napping a long time ago, but we still make her go down for a few hours each afternoon to have a long “body break.” (She has scoliosis, and it’s hard for her to sit up for prolonged periods). We usually put on something for her to watch. J insists that we watch with her.
One day, her nurse, E, used this time to do some (gasp!) charting.
J: E, if you don’t watch the movie, you’re going to be fired.
Just last night…
We’ve just done her bath, and I am dressing J. It’s not going fast enough.
J: Get my naked off!!
J: I mean, get my clothes on..
And because it’s almost Christmas
J’s favorite song is “Hark the Herald” She sings it year round. This was recorded in July.