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.
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.
10 January 2015: Awe and wonder.
One year ago, my daughter read to her kindergarten class. My heart was proud, and it rejoiced.
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.
