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.
Julianna Yuri 
From the outside looking in, it seems like you’ve captured so many memories of Julianna here on the blog, but I’m sure that pales in comparison to all the other things you feel are slipping away with the passage of time. Nevertheless, you’ve recorded so much here already that it’s allowed many of us to learn at least some small portion of what she was like. And that small portion seems pretty amazing and wonderful. Love endures. Even when it involves the passing of a loved one. Yours for Julianna will clearly endure, as well. She won’t be forgotten. Not by you, nor those you continue to share her story with. Details aside, that’s what matters most, I think.
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Your post today has lead me to contemplation. You are courageous to document your sentiments.
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I will never forget your truly remarkable child. Thank you for allowing folks like me to get to know her through your writings.
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I always felt guilty about the little things I just couldn’t remember about my little ones. I always thought that I was just too busy and needed to be more intentional, but now as I read your words I realize that it IS normal. The heart remembers the best stuff though, thank you for sharing Julianna with us, your family is very dear to our hearts ❤
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Lady J is always with us……
I see J each time I look at your picture from “03”….
xxxxxoooo
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I miss Julianna, too. I am a stranger to you, your family, but not to Julianna’s “love is a superpower”…forever in my heart and soul. Blessings to you and your family as every day passes, and each precious memory either fades or becomes even more bright. I/we never forget Julianna, a heroine for all time and all hearts.
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Beautiful Julianna, her smile captures you, her eyes mesmerizing, her heart is exceptional, her mind is adventurous, her wit was surprising and funny, and most of all her love was her superpower! 💜💞💘💕💞 How can anyone that was fortunate to meet her, I’m thankful I saw your CNN special and I was immediately drawn to the TV……we can never forget you JULIANNA.
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“Synaptic Suicide” is what i called it as I realized that the synaptic transmission process was really fighting me. I could feel memories slip away. I imagined that part of my memory was brain activity dying off. I could almost feel it slipping away. I came to reason that the synaptic transmission pathways were not being used…after all my lost loved one was not there to stimulate that part of the brain. It had to let go…my brain had to re-wire. There was nothing to stimulate the neurons/ dendrites that once fired with electrical activity when my loved one was there. So i imagined how powerful of a force nature is… and i imagined that Nature would do a process of “Synaptic Suicide” as my brain re-wired itself.
So anyway, it is almost absurd that i do not know much about the brain…not nearly as much as a Neurologist that is for darn sure 🙂 But i totally promise you…i totally promise that you will always remember what matters…you will end up with a newly re-wired brain, but J will still be there, in a way that matters. It is hard to let go …it is hard to even begin to find peace with what happened…yet for what its worth i see you are making progress. Let go, do not be disturbed by the tricks your mind seems to play. You will not necessarily remember every detail…yet your mind and heart will always be full of love for J and no one or nothing can take that away from you. Signed with love- an A.F disabled vet.
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Love is a super Power, Juliana is Love. Such a brave young girl.
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💓
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Princess J, always in our hearts.
Bernard
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Thank you for sharing. Once again I am humbled by your and your daughters strength in face of such adversity.
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Thank you for being so brave and vulnerable to share all of this. The world needs more light and Julianna’s light carries through in you and in all of the people she’s touched. I’m constantly encouraged by you and her courage.
I suffered a loss in my family almost 7 years ago and it upsets me when I have to count back the years, squint to hear her voice in my mind, pause when I see the dates that pain my heart …. someone recently told me something that made me feel comforted by people who have shared losses
“you don’t ever get over it … you just learn to live with it better.”
It’s the ones we lose who often teach us how much love there is to gain in this life. May you and your family be comforted by the outpouring of love and support of those around you and tons of strangers around the world who have been touched by Julianna’s story.
❤
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Julianna is in our hearts and prayers. Love from your friends Pedro, Sujin, and Jessica.
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Your words are as beautiful as the Light of your Julianna’s soul. I pray that comfort finds your heart when it needs it the most. Today and always.
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Thinking about you all the time Princess Julianna and your beautiful family all the time. My Granddaughter loves flowers too. This morning I was in the store and passed by the fresh flower section. I stopped to get her a few tiny red roses in a Ladybug vase-the inspiration came from “Just thinking about you today”, and your pure kindness of heart. Somebody when they get home from school today is going to have a great big smile on their face, because of your inspiration. Julianna, you will never be forgotten.
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I come frequently to check if there is a new memory just as I used to check if there was a new Julianna shared story because Julianna and her family touched my heart ❤️. When there isn’t a previously unread entry, I randomly peruse one or more of the previously read Julianna stories, reading, smiling, crying, as though I am reading it for the first time. I’m writing this to let Michelle know that, because she so graciously shared Julianna with me (all of us) and, because of that, Julianna resides in my heart, I come here often to visit, Julianna isn’t forgotten.
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