Since February, Julianna has needed BiPAP almost 24/7. She takes it off for ten minutes each day during her bath.
About a month ago, I walked into our bathroom while Steve was giving Julianna a bath. J was leaning back in the bath chair with her BiPAP on. She smiled at me, happy as a clam.
She looked so pleased with herself for sneaking some extra time on BiPAP. I couldn’t help but acknowledge the obvious.
“The BiPAP makes it easier to breathe, doesn’t it?” I asked.
She corrected me. “It makes it easier to talk.”
In other words, Julianna needs to breathe because she needs to talk.
Julianna’s words. I would not have had the courage to start writing had it not been for her words. They are funny, profound, encouraging, heartbreaking, en pointe. Her words reveal her enormous heart and sharp intelligence.
Just this week, there’s been a change. Her voice, already softer than it’s ever been, has taken on a high-pitched, forced quality. I don’t know what this means, but I suspect that it’s not good. Nothing about this stupid disease is good — it takes and takes and takes. What if it takes Julianna’s voice?
At another time in my life, I would have tortured myself while trying to come up with a solution. I would have stayed awake (even later, I mean), wondering what this would do to Julianna, and to us. I would have made a mental flowchart and researched devices not covered by insurance and shed bitter tears over yet another loss.
I’m not doing that anymore. The events of last year forced us to acknowledge that Julianna’s disease will ultimately win the physical battle. It’s a devastating reality, but once accepted, everything was lighter, sweeter. Julianna is so much more than her physical body, and these things are now our focus.
Julianna’s voice may be weaker and softer – but it hasn’t stopped. If fact, she talks even more these days. There seems to be a sense of urgency: she can’t keep quiet because there are too many stories to tell, too many opinions to state. There’s no time for sadness or self-pity, so we follow her lead.
I started writing so that I could share Julianna’s words with the world. God willing, I will continue to share, regardless of what happens to her voice.
These are some of Julianna’s words. I want to remember them forever.
When I’ve had a bad day, I sometimes seek advice from J:
M: What would you say to someone who’s being mean?
J: “Go AWAY.”
M: What if that doesn’t work?
J: Then I would kick them.
M: You would?
J: Yes, although you would kick them for me.
PS — She really said “although”
April 2015 — Note to Julie, dictated by J:
Miss Julie — Am I a little girl always? I love you. Wish for a unicorn. Remember Julianna always!
April 2015 — note to Homie, dictated by J:
Homie — I love you. I have a loose tooth. There is something weird. Do you know what is weird? It is glue. Love, Julianna.
April 2015 — J’s prayer:
I love you.
You are good.
You are very good.
Will you make me strong?