This clip is from February 2013. Julianna was two, and she had just gone through her first PICU admission for respiratory failure a few weeks prior. It was “only” eleven days (and the mildest of all her PICU admissions) but it was my introduction to hell on earth.
A few hours before this clip was taken, Julianna had woken up with a runny nose. It was nothing — but in our new world, it was terrifying. The trauma of the PICU was fresh, and I was afraid. Should I stay home from work so that I could watch her like a hawk and worry more thoroughly?
My mom was visiting at the time and told me to go – she’d watch Julianna, and it would be fine. She sent the “I’m OK” clip later that day to reassure me.
Julianna ended up getting sick again. I couldn’t believe it – again? Couldn’t we get a break? Why did a two-year-old have to go through something like this? It was not OK.
Fortunately, she wasn’t hospital sick this time. We went through some scary, sleepless nights, but she recovered. So it was OK — in the end.
And that’s the way it is: not OK, but ultimately…OK. Not OK that Julianna has suffered and lost (and she knows it). OK, because she acts like it doesn’t matter. Not OK that a child has to be stoic for her mother. OK (and such a blessing) that she has taught me to worry less and live more.
Take this as an example:
J: Can we visit Ellie?
M: She lives really far away, sweetie. I don’t think so.
J: But we can go on an airplane…
M: It’s a little hard for you to go on an airplane now, Julianna. I’m sorry, but I don’t think we can do it.
J: Because of my mask?
J: I wish I didn’t have to have my mask.
M: I know.
J: So will you and Daddy and Alex go?
M: And leave you here? No way. Do you really think we would do that?
J: shakes her head
M: I’m sorry we can’t go on trips. I wish we could take you places…
J: I have problems, but I’m OK.
M: Oh Julianna…we all have problems. Do you feel bad about it?
J: No. I’m OK…whispers. Let me tell you something
M: I lean in. OK – what?
J: whispering: let’s trick the CMT and give it poison. And then it will go away.
I have problems, but I’m OK.
Tell me, how do I respond to this with anything other than abject humility and the promise to try, to never lose hope? I have to be OK too, for her and because of her.
Today, she tells me that she’s OK in the softest of voices (the softest it’s ever been.) It’s in her silent laugh, and in the way she insists on playing even though it’s getting harder to sit up (“Body break, schmody break,” she said yesterday.)
It’s OK, though, one day, it will be so very wrong.
Ultimately — in the end — it will be OK.
This is from April 2014. Julianna had just spent two weeks in the PICU and was finally home. Alex had decided to welcome her back by decorating the house with streamers and balloons, and this is J’s first look. Her voice (much stronger than it is today) was weak from the hospitalization, so it’s hard to understand:
The words don’t matter. The look on her face says it all: pure joy, loud and clear. After another hard battle and heartbreak, things were OK again.
Pictures from the week:
J was determined not to be pinched.
Enjoying the view with a few dozen friends.