J’s voice is less squeaky now, and she is her funny, spirited and bossy self. Other than a few changes (needing oxygen at night, increased BiPAP settings, difficulty breathing in certain positions), everything looks like it’s back to normal.
It’s not quite that way.
Everything is going well, but we’re all still on heightened alert.
Steve’s parents live five minutes away from us, but they are sleeping on our living room floor. We have all had too much experience trying to bring Julianna out of respiratory distress. It requires speed and coordinated effort, and it’s best not done alone.
These days, it just feels better to be with others. Homie is back now too. She spent Thanksgiving with us and went home less than a week ago. When J got sick over the weekend, I told her to think about coming back. I just couldn’t predict what would happen. She has been with us through every hospitalization, so she knew what I meant.
J’s recovery has exceeded every expectation, and part of me feels silly for making my mom come out again so soon. On the other hand, any time with loved ones is time well spent. I want her to be with J and hear the dollhouse stories first hand. I want her to see the light in Julianna’s eyes and laugh out loud at her outrageous declarations. I want for her to be a part of the group hugs that J requests so often. These are the moments we treasure: they are everything.
J did her “happy dance” as soon she woke up.
J watched “Brave,” one of her favorite movies. (She calls Merida the “wild princess.)
J: Mom, look!
I look up. It’s one of the naked butt scenes.
M: (mock modesty). Julianna, that’s sooo embarrassing!
J: I’m not embarrassed.
J decided that all of her ponies have special powers. The white one can make snow. The blue one makes water.
And this purple one?
This is Tylenol pony. She makes people feel better.