Seven Months

I’ve become a counter of days, a historian of sorts. The length (in order) of Julianna’s hospitalizations: 3, 11, 28, 14, 3, 21, and 3 days

It’s minutiae, but I keep it in my working memory because I can’t lose any more of her. Her feed rate: 76 cc/hr.

 Love is in the details, they say, and I want to remember all of them. Her BiPAP settings were 16/6.

I remember her birthday (25 Aug) and her heaven day (14 June) of course, but I also remember 10 January (the start of her most hellish hospitalization in 2014; the day she received her princess room in 2015) and 24 October (the day of her care conference in 2014 – we decided to start hospice then,  and the day our CNN story came out in 2015).

The harsh and unrelenting truth, though, is that memories fade, and they become unreliable. She had a little mole below the knuckle of her right index finger. We called it her tiny baby mole… or was it on the left? How do I not know this?

 It isn’t right, and it isn’t kind. The part of me that can’t believe she is really gone can’t accept the fact that, after just seven months, I’ve forgotten so much.

The logical side of me knows that this is normal — the details of Alex’s baby days are fuzzy too. The brain prioritizes and it filters. Numbers and details aren’t important unless you are missing someone – terribly.

And so I try. I remember, and with great effort, I try to give words to memories both trivial and profound.  Some days it seems impossible, but I can’t stop trying.  It’s my defense and offense against grief, my way of honoring our little girl. I remember you, Julianna — and I won’t let others forget. 

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Three years ago, I watched my daughter struggle for breath – for days, then weeks. She fought mightily, but with a body that possessed hardly any strength. My heart was pierced, and but it did not stop.She did not, so it could not.

 

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January 2014: not the first or last time in the hospital, but the longest and the worst. This is after she turned the corner.

 

Two years ago, I saw delight and wonder in my daughter’s eyes as she took in her elegant new room. My heart swelled, and it soared.

 

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10 January 2015: Awe and wonder.

 

One year ago, my daughter read to her kindergarten class. My heart was proud, and it rejoiced.

 

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14 January 2016

 

And today, I miss her, just as I have every moment of these last seven months. My heart remembers what my brain does not, always and forever. Every little single thing.

 

 

 

 

“Zip Your Lips!!”

Note: I wrote this last winter but didn’t post it because the subject matter (unboxing videos) is — just strange. But it’s too funny to keep to myself. For everyone who misses Julianna’s rapier wit, happy belated holidays (Featured image by Charles Gullung)

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Julianna took her toys very, very seriously.

 

 

Julianna has a new obsession: Youtube “unboxing videos.”

If you don’t know what I’m talking about, good! Basically, someone with a soothing voice introduces a new toy, and there is a close up video of a hand (which I assume belongs to the voice but there is no confirmation. It is always well-manicured, which makes me wonder… can manicures be tax write-offs?) taking the toy out of the box and explaining all the features — in great detail. How many princesses will fit in Rapunzel’s carriage? Here’s Rapunzel….Cinderella…Queen Elsa…Three. But only two princesses if you want to close the carriage door. It goes on and on.

J: Mom, come here.

M: OK – what?

J: Can you try to find something like this for my birthday?

M: OK, but your birthday is a while away. I go back to my chair.

J: five seconds later. Mom, come here.

M: Yes?

J: Can I have this for Christmas?

 

The worst thing about unboxing videos is the soothing voice.

 

M: Julianna, don’t you think that this voice is weird?

Silence. When there is a new unboxing video on, I am irrelevant. 

M: It’s too soothing. I assume the soothing voice: Now, Queen Elsa is going to wear the yellow dress…looks fantastic. Here’s Princess Anna –

J: Mom, stop.

M: Why?

J: whispers. It’s annoying.

 

Later on, as I finish Julianna’s medical “chores.”

M: I’m going to talk like the that lady. I assume the soothing voice with its slow, lilting diction: Now I’m going to vent you. I take a 60cc syringe, then I clip your G-tube and attach the syringe. And look! 40cc’s of air…then I detach the big syringe and hook you back up to the Farrel bag….

J: Mom, zip your lips!

M: I pretend to zip my lips up…but continue to mumble in the same slow, soothing, singsongy manner. 

J: Mom, zip up your humming!

I burst out into laughter. 

J: Mom, you ripped your lips!

 

Even later as we’re reading her bedtime story:

M: Maybe I should do Calvin and Hobbes in the soothing voice.

J: No no no no. This is going too far. Too far.

M: Why?

J: Because Calvin and Hobbes is not the time for jokes.