Life isn’t for the faint of heart around here.
Last Friday was awful. We truly did not know where things were going.
J’s overnight recovery was miraculous. She is back to being the vibrant, cheerful, outrageous ,five-going-on-sixteen-going-on-ninety year-old that we know and love. What a relief!
Earlier today, as I was thinking about all of this this, and about what a difference a week makes, it happened again. Another twist: her new feeding tube stopped flushing.
As I gathered up the supplies to help Steve troubleshoot, my mind raced and wailed: You’ve got to be kidding me. We can’t do this again. Why now?? It’s only been a week…
We tried flushing with soda, hoping it’d break up whatever was blocking the tube. Please let it work, please let it work…No luck. This is not good….
Julianna, displaying her usual and perfect situational awareness, tried to take charge:
J: Text K, (our hospice nurse) – tell her everything! Translation: This is not amateur hour, folks.
We told J to hold on while we did one more thing. I rolled her onto her side as we prepared to try a warm water flush, and SUCCESS! It flushed, and our few moments of terror were over.
It took a lot longer for my nerves to recover, and even as I write this, I’m still in partial fight or flight. We just never know what will happen around here.
Julianna’s life hangs by a thread. I like to imagine it a brilliant, sparkling, pink gossamer thread with a core of steel, but the reality is far less glamorous.
The ugly truth is that she is dependent on machines for vital functions. Things here hang not by threads, but by tubes made of rubber and plastic. And even with the best and most vigilant care, machines and tubes fail.
It’s like that for all of us, really. Those blessed with good health may never know what it’s like to need a machine to breathe, but we are all eventually confronted with the fragility of life. The difference can come down to an extra fraction of a second in the passing lane or a micro-deletion on a gene: we are all hanging by a thread.
Knowledge like this can fill us with fear and paralyze. It can also lead to more humility and more appreciation. Sometimes it does all of this – all in the same evening.
Hold on to the sweet and the good.
This week:
Julianna bloomed:
And played hide and seek:
And tried a new look — Princess Rock Star Bunny:
And, in case clarification is needed on my “five going on sixteen going on ninety” characterization:
J: When I’m 13, I will be a teenager?
M: Yes.
J: Will I be annoying?
M: I don’t know. Will you?
J: I think I’ll be a little annoying, but not as annoying as a regular teenager.
M: Why?
J: Because, you know, I’m, like, a princess.