Six Months

Note: My writing, like everything else about me these days, is a bit bewildered and lost. (And it’s maddening, because Julianna’s story is most certainly not over.) So I’m learning patience. This post is a remembrance and a reflection — but it’s also a little victory against our monstrous loss. 

 

The living room is decorated now, and I think Julianna would approve. There are old things, new things, old things doing new things – and she is everywhere.

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These were a gift from last year. I forgot we had them — Alex didn’t.

 

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An Alex arrangement  (I believe he’s part elf): the little mittens are Julianna’s, and the big ones are his.

 

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Last year’s ugly Christmas sweaters….

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Repurposed! Could Awkward Unicorn be in anything else but an ugly Christmas sweater twosie? J would have loved it…

 

The little tree in Julianna’s room is up too. It’s been ready for Christmas since last May.

Yes, May.

That month, her feeding tube failed, so we went into the hospital to get it replaced. The procedure went smoothly, but the recovery was rough. (see Roller Coaster, Part II. I am humbled again by her words, and look up — through tears — at heaven. She told me it should be this way.)

She wasn’t doing well, and we were quite busy trying keeping her alive. Amidst the chaos, someone suggested something that, on the surface, seemed absurd: why not put up some Christmas decorations?

We decided that it was a good idea.

 

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Julianna’s last Christmas tree, born in May and still up today. She loved the angel and asked to see her often.

 

 

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Before Awkward Unicorn, there was this one. Have I mentioned that I no longer believe in coincidence?

 

(Would you believe that, in all my years of medical training, not one second was devoted to holiday décor? Proof that the really important stuff is not learned in a classroom.)

The next day she turned the corner, and I felt a little silly. We had been through this several times before – a sudden illness, a few days of life and death, then a miraculous recovery. It was exhausting and terrifying – did we really need to make it more dramatic by imposing on her a last Christmas? She would see another Christmas, right?

The tree stayed up. Every day for the last month of her life, our sweet Julianna enjoyed a little bit of Christmas.

And that’s the way this season is for me: beauty and wonder, mixed with deepest pain and longing.

Six months today. The first six months of the rest of my life.

 

A remembrance:

Reading my account of Julianna’s last trip to the hospital brought back a lot that I’ve already forgotten.

As much as she hated the hospital, she tried to make the best of it. Her room for that final hospital stay had white walls and one blue accent wall. One colored wall! That’s all she needed.

When her nurse came in to introduce herself, Julianna told her that she loved the room with its one colorful wall — it was beautiful. She asked if she could be in the very same room two years from now (the next time her feeding tube would need to be replaced). It was as if she knew her nurse had personally chosen that room with Julianna’s aesthetics in mind. (And blue wasn’t even her favorite color! I can only imagine her response if the wall was pink…).

I don’t think that I’ve ever met another patient who was so concerned about her nurse’s feelings.

And a promise:

It’s been a very Pacific Northwest winter here — short days and lots of rain and clouds. Earlier this week after a particularly hard day, I stepped outside and saw this:

 

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A bit of pink, daring to peek out from all the gray.

19 thoughts on “Six Months

  1. hugs Michelle!

    feeling a tiny spark of joy – not happiness, but joy, also because joy transcends circumstances – for you that Alex is able to cope with this bravely. way to go, Alex! 🙂

    But yes, reading your recollections .. May does (suddenly) feel longer ago than it really is, already .. oops.

    Festive holidays can be hard – they have been for me for awhile now, though for a different reason. I suppose for me, all that noise & boisterous energy the occasions bring, causes too much sensory overload (UGH) .. & yet I always feel compelled to be cheery and all because ~festivity~. Especially Christmas and Lunar New Year -_- (hashtag, Asian Chinese hur.)

    But sometimes tiny things help to heal the mess for a tiny while 🙂 Even if it helps a teeny, tiny bit and/or no matter how short a while – still helps! For me, tea & quiet spaces help to heal my heart, when festive seasons turn too scary lol. I’m not sure what works or doesn’t for you and/or the boys, but drop me a note if you have preferences! (Also saves trouble on the guesswork .. ;-))

    Hugs, because I still read. This isn’t to say you should or shouldn’t write more (as you’re comfy!), but more like a wave hello that even six months later, there are still people rooting for the Snow family & there are still people who love & remember our favourite mermaid (warrior) princess J ❤

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  2. Ahhh, the first six months of the rest of your life. Now seemingly and impossibly passed. And somehow, on to the next six months. My heart sends you hugs, blessings, tears, smiles, and gratitude for sharing not only the inspiring, sweet, tragically challenging life of your dear Juliana but also sharing your own journey. Your posts have blessed my life, a senior lady with chronic frustrating health challenges, having lived through numerous losses in my life. As a Peds ICU and hospice nurse. As the Gold Star Daughter of my beloved father, KIA Vietnam. As the remaining family member of my immediate family. I smile through my tears when I read about your beloved Juliana, truly a wise soul who blessed multitudes of lives during her way too short time here. I am reminded of one of my favorite quotes from John O’Donohue, Irish mystic, poet, philosopher, written before his (early) death. He said that those who have left us are “just the other side of our breathe”. I believe that Juliana is even closer than that! She would somehow defy any phsyics of eternity, spiritually of heaven, realities of energy and existence between this life and the afterlife! Yes, she would! The complete fullness of life she lived here continues, without her frail body and FOREVER WITH HER MOST SUPER POWER OF ALL…LOVE. Christmas Blessings to you, her Dad, her Alex, and all who love Julianna.

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  3. the pink is definitely Js way of reminding you she is always with you 🙂 !!!! ❤ !!! Happy Holidays to you guys, Alex is definitely part elf 🙂 he is an awesome decorator ! I will always be one of your families biggest fans 🙂

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  4. I think of Julianna every time I see an ad for a Mermaid blanket! She would of course have one, and approve of every one gifted to.. anyone!

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  5. I think of Julianna when I see a unicorn and also I love pink so she is NEVER forgotten! Her ‘May’ Christmas decorations and tree are beautiful….just like your sweet little angel ❤ Stay strong and big hugs to you all Michelle ❤ Just imagine how colourful and pretty heaven is this Christmas ❤ xxx

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  6. Co-incidence just turned over to the part of Jack Frost film where the dad disappears back into a pink sky saying….I will always hear you ❤ Julianna always hears you and your family Michelle ❤

    19 is Jo R! 🙂 xx

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  7. Holidays I can only imagine are tough. You are right when you say .” When you have children, the Holidays become magical ” my 2 year old just loves it!

    Julianna story has touched my heart in a way that’s unexplainable. I am grateful to know her through your writings. When I think of her or see something that reminds me of her, I post it on my IG @amcmy1, I want to share your awareness of CMT to my friends and family and maybe we can fight this all together…..,

    The pink in the sky you always see means Julianna is always there right by you…… and I’m sure she she very very happy ! 💗💗💗

    Happy Holidays to you and your Family!

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  8. Oh Michelle,
    Your courage and vulnerability in the face of unimaginable loss is incredible. Julianna lives on in your sweet and funny recollections of her, in the way you share her stories and observations with those of us who were never fortunate enough to meet her. She – and you – are beautiful and incandescent… Because #LoveisaSuperpower. ((Hugs))

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  9. Read this the other day and the first person to come to mind was Michelle and her writings:

    “Even in our sleep, pain which cannot forget falls drop by drop upon the heart, until, in our own despair, against our will, comes wisdom through the awful grace of God”

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  10. Awesome, and beautiful. We too remember Julianna with the pink in the clouds, and also each time we see an awkward pink unicorn, they seem to be everywhere now. Our hearts are with yours, and remembering sweet Julianna. 💗

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  11. I had my own remembrance of Julianna this past weekend. We had an evening church service of Christmas songs, and as soon as we started belting out “Hark the Herald,” I thought of Julianna singing along with Carrie Underwood’s rendition. I wish you and your family a happy holiday. May you make new memories with Alex while also celebrating those you shared with Julianna. She’s not forgotten by anyone who knew her…and that includes those of us who only know her through your writing. Hark the herald, indeed. I have no doubt the newest angel is also singing that song in heaven above. God bless all of you.

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  12. I read about Julianna in a People Magazine and was very saddened by her struggles and yours as well. My heart goes out to you and your family. I lost my,daughter to a rare neurological disease as well, CS almost 15 yrs ago and still feel depressed around the holidays being the hardest time. You gave her the best care you could. Thanks for sharing your story. Blessings to you this holiday season. 😘

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  13. Sending love and courage and strength to continue to do the impossible and unthinkable. Amazing CMT warrior family, thank you for sharing your Christmas in May story. Julianna continues to teach us; Christmas doesn’t have to be in December, the spirit of love and kindness and giving can be anytime anyone needs a little sparkle and magic.
    Thank you for continuing to write about your journey. We care, we hear you, we pray with you, and we celebrate your amazingly wise and special child with you.

    Much love and peace,

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