Ten Months

I’m not doing well.

There’s a heaviness that is, at times, crushing. It oppresses and smothers and obfuscates. It’s always there.

The depths of my emotions startle me sometimes, but, really, it’s quite logical. My daughter died – am I supposed to be doing well?

Oh, I know how it will turn out. I know that she suffered on this earth (I saw it – a lot), and I know she is free. I know that I will see her again — for eternity, in fact.

But now I mourn. I don’t get to skip over that part.

To get to Easter, you have to go through Good Friday.

And it is so painful. My God, it is so painful.

(I think God gets it. He saw his own child suffer and die. He saw Mary’s tears, and he sees mine. He knows that it can be no other way right now.)

Reality, you see, is brutal. The most difficult things I express in this space still go through a filter. Something in me wants to spare you from how bad it really is. Even if I wished to share it all, I can’t:  words are simply inadequate.

But here’s another reality that is as undeniable as my pain and requires few words:

 

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After a long, cold, gray winter, the cherry blossoms erupted, splendid and unapologetically pink. How could they not remind me of Julianna?

And then, there’s this girl – my God, did she live!

Untitled from Michelle Moon on Vimeo.

 

One year ago, she danced — as hard as she could — to the Gummy Bear song.  (Note the multicolored nails, the sticker on the BiPAP hose, and her long, ponytailed hair.  I forgot it  got that long! It was one of her goals, and  I am so grateful that she achieved it.)

 

Nine Months

About a week after Julianna died, I saw her in a dream. It wasn’t anything profound or tender….the girl was shopping.

In the dream, we were visiting relatives in South Korea. I was at my aunt’s house and Julianna dropped in. She was seven, maybe eight years old and was dressed in jeans and sneakers. She was clearly busy — she looked stylish, but was ready to move. Sunglasses were perched on top of her head and some cute cross bodies were slung over her left hip. She didn’t say a word, but I understood somehow that she wanted to show me her new bags – weren’t they great ?! She appeared for just a moment and was gone – presumably to do some more shopping.

 

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I’m pretty sure that my dream was inspired by this picture, taken on Thanksgiving day, 2011. She is fifteen months here. We didn’t know about CMT yet and hoped that she was just a late walker

 

I have dreamed almost every night since she left us – dreams with all kinds of weird plots and random people – but nothing more with Julianna . And I have wanted it so badly, to see Julianna again in a dream, in a sign., something, (And not a subtle little something, please – something big and undeniable. )

 

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23 Jan 2017. Biggest rainbow I’ve ever seen — but it’s not her. 

 

Let’s face it: dreams and signs aren’t enough. I want her. I want Julianna back. I want to kiss her forehead and bring her new toys and see her eyes light up with delight. I want to be astonished by her insight and double over with laughter when she says something outrageous. (Did you know that she once threatened to fire one of her nurses for working on chart notes while “Brave” was on? Watching the movie together was important. Paperwork, not so much. Once again, she was right on.)

It doesn’t seem like too much to ask for, does it? Such a reasonable request, a mother wanting her daughter, but I’m living in a world where nothing makes sense, a world that is less bright and not nearly as fun as the one I inhabited with her. There have been moments of joy (what would I do without Alex?), but always under a heavy blanket of sadness. They say it will be different one day, but right now, it’s hard to even care.

If she were here, she’d give me a good talking-to. She would fix me with those beautiful eyes and say “But Mom! You have to try. You have to be happy!” (And she is the only one who could say those words to me – truly).

I would say, “Yes, but I miss you so much. So, so much…”

She already gave me part of the answer, years before I would need it: I don’t have to worry because God is taking care of her. 

So maybe the big sign has already happened. I know she’s OK, and I know I will see her again. With all of my heart and soul and mind, I know this.

But I was right too.  I miss her. So, so much.

Nine months today, my sweet child.  I will try to be happy — for you and for Alex, I will try.

 

J: When you die, will I come to get you?

M: I don’t really know how it works, Julianna. But I think you will be the first person I see when I get to heaven. And I’ll be so happy.

J: Do you want me to stand in front of the house, and in front of all the people so you can see me first?

M: Yes. I’ll be so happy to see you.

J: Will you run to me?

M: Yes. And I think you will run to me too.

J: I’ll run fast! (then she shook her head back and forth to show me how fast she will run).

M: Yes, I think you will run so fast.

Eight Months

I’m not sure how this grief thing is supposed to work but I can say this much: at month eight, it hurts more, not less.

It’s incredible, really, that she is gone. I had a daughter, and then I didn’t. How is this possible?

I was there when she left and I sit in the silence now. It is obvious that she is gone, but my mind doesn’t understand it and my heart doesn’t accept it. Surely this didn’t happen– right?

The thing that bewilders me most is the love. Where, exactly, does the love go when you have loved someone with your whole heart – with desperation and joy and fury – and that person is gone? This kind of love cannot be ignored and it cannot be contained. Where does it go? What do I do with it now? This is the part I can’t get past; this is the part that hurts.

I have no answers, just love for a girl with the loveliest of hearts and the most buoyant spirit. The love never runs out. She taught me that.

I would do it all over again, with full knowledge of the pain ahead. I would do it again and again and again, because the only thing worse than the pain now is the thought of not ever knowing her at all. I am forever blessed because I got to be her mom.

So at last, here is something I understand: love is greater than the pain. It’s already won, but in this imperfect place, it coexists with the pain.

One day, it will be different. Until then, I love and I hurt, I love and I hurt some more. It can’t be any other way.

 

Two more things I know: she gave love, and she knew she was loved — both in massive amounts.

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(photos 1, 5 and 6 – Aubrie LeGault; photo 2 – Charles Gullung)

 

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.

 

Merry Christmas, Newborn King

Christmas is for the brokenhearted too. Maybe even more so for those of us who hurt.

It’s hope, residing in dark and uncomfortable places and the promise that our pain is temporary. It’s turning away from fear in order to choose Light and Love (even if we are still afraid.)

Christmas is for the children — and everyone who needs a Father.

Happy birthday, Jesus. Merry Christmas, world!

 

Julianna: “Hark the Herald…” from Michelle Moon on Vimeo.

 

Hark the Herald by Julianna Yuri Snow, age 3.

– Her favorite version was Carrie Underwood’s. You can hear the influence in the way she lingers over the last few notes “New….born….King….”

– “God and sinner” becomes “golden singer”…because you could never have enough sparkle.  (Sometimes, she sang “Joyful all the Asians rise” instead of “nations rise”.)

Merry Christmas, my sweet Julianna.

 

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.

Five Months

It’s the most wonderful time of the year.

I love everything about the holidays, the good and the bad. I revere the meaning and also enjoy all of the trappings. I know you don’t need glittery decorations and peppermint everything to celebrate gratitude and Jesus’s birthday, but I like it all – unapologetically.

When you have kids, the holidays become even more magical.

 

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Julianna’s first Christmas morning.  Alex is moving in for a kiss (I think). J isn’t having it

 

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Christmas in Tucson. Instead of snowflakes, bubbles. Still magical. I’m amazed that J is able to stand by herself here…

 

It will be different this year. There’s just no way around it.

I’m not sure how I feel about it. Grief, I have discovered, is unpredictable. It’s my new filter, and it changes everything.

There will be no photo card this year. Maybe we’re done with them for good. Somehow,  I don’t really care. I lost my daughter this year. A photo card is meaningless.

 

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This is one of my favorite pictures of J and A. We used it for our 2013 Christmas card. It was the calm before the storm that was 2014.  Photo by Jennifer Rialtos

 

The toy aisle is another matter. Oh, how Julianna loved her toys! We would have had a closet full of Christmas gifts by now, new superheroines and ponies and princesses, all waiting for their turn to be loved and be launch into fantastic adventures. Her eyes went wide and sparkled at the sight of a new toy, so I was the most liberal of toy purchasers — even as I bemoaned the excess. Now, the toy aisle is too much, and it has nothing to do with consumerism.

Christmas music is safe. Her favorite was Hark the Herald.  I remember her singing it, even when she didn’t have breath to spare. I hear Alex humming it now as he eats apples on our living room floor, and I’m comforted. He seems to be thriving now, and I think it’s because he has both of us. I’m grateful for this, but also broken, because it makes me realize just how much he had to sacrifice when Julianna was here. And now he saves us, just by existing.

I have no desire to put up the Christmas tree, but we’ll do it if Alex asks. It seems like a reasonable plan, even if this new world is anything but.

 

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364 days ago we put up the tree.

 

And we still have to get through Thanksgiving. Last year, Thanksgiving came to us, and it was epic. This year, we will travel as a family of three to St. Louis. Julianna spent three of her five Thanksgivings here, and they are some of my happiest memories. This one will be tough.

 

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This is the last time she went to Homie’s house. You can’t even tell that she had stupid CMT. I love the belly.

 

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J was able to ride the merry-g0-round with help. She always picked the elephant.

 

I don’t know how to do any of this. Grief leaves me bewildered as often as it leaves me sad.

Thr holiday season so far through the filter of grief: joy (that she was mine), peace (that nothing can hurt her now), and wonder (what, exactly, are we supposed to do now?).

 

I remember….

One year ago (more or less), we let a documentary crew into our home to film Julianna’s Christmas for South Korean television. Julianna took it in stride, but the strangeness of living in front of a camera was felt by all.

One evening, they filmed us as we played in Julianna’s room. The producer asked Julianna to explain what we were doing.

Fixing him with a stare, Julianna said “We’re going to have a quiet contest now.”

“Quiet contests” were a game that Steve and I employed when we wanted a few moments peace in the car. Julianna was never very good at them — until that night.

 

Featured image by Jennifer Rialtos.

Cookies, AwkUni Style

This week, we received a gift from a self-described “member of Julianna’s Awkward Unicorn Club”: cookies.

Julianna-inspired cookies, to be exact.

 

They were addressed to Alex, and he was also a cookie-muse. (He just got his blue belt in real life. I have stopped believing in coincidences.)

 

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This is Julianna, fighting stupid CMT. She is just as Alex imagined her a few months ago, and has achieved the highest belt in the world according to Julianna (pink, with a purple sparkly stripe. Her toenails are even painted…)

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Much to Alex’s delight, there was another breed of Awkward Unicorn. These poop rainbow colored poop (candy decorations).  He just had to remove their marshmallow “butt plugs” and give them a shake. (Simultaneously gross and cute. Julianna would have loved it too.)

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The one with Julianna in her hanbok is my favorite.

 

 

In her attached note, the master cookier (I don’t think it’s a word, but it should be) wrote:

I was admiring the angel cookies, had them all lined up and was wondering if she would be pleased…

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…and the room and outside in an instant turned bright blush pink. The sun was setting and it should have been getting darker, but for a minute, it became very bright, and very pink.

 

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In a world in which a mother is required to witness her child’s first and last breath, nothing makes sense. I didn’t expect this aspect of grief, grappling with the meaninglessness of it all.

At the same time, meaning can come from unexpected sources. Cookies, when they look exactly like ones that your daughter would send and are crafted by someone you’ve never met, make it just a little better.

I’m pretty sure she was pleased.

 

 

 

Exceptional

“Exceptional. EXCEPTional. Exceptional!”

This was Julianna earlier this year, muttering to herself like she often did any time she was not directly engaged in conversation or play. It was an endearing but mostly incomprehensible habit.

Julianna’s hospice volunteer shared this memory with me. She observed her one morning saying the word “exceptional” over and over. J had found a new word, and she was exploring it. She probably liked the way it sounded, and I’m certain that she liked what it meant. (Another endearing habit: she frequently claimed that she didn’t know what a word meant – right after she had used it perfectly in a sentence. The girl had context.)

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Julianna and her hospice volunteer. We call her our angel.

 

I love this image of her. She adored words; she was exceptional. Of course she should delight in the word “exceptional.” It just fits.

Communication through spoken word was vitally important to Julianna. As stupid CMT took hold, volume and enunciation diminished and it was hard to understand her words. This frustrated her, often to the point of tears.

In her last year, something changed. Maybe we got better at listening, or maybe she made peace with her voice. Calmly, she would repeat herself and enunciate each syllable until we got it.

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Things got easier after she started using a microphone.

 

I like words too, and they’re not coming easily these days. I hope this passes, because Julianna’s story didn’t end with her death.

In the last post, I wrote that there are no new stories. This is stunningly and painfully true, but only in the literal sense.  I know that there is meaning and context yet to be discovered in the old stories, the ones show how a five-year-old girl taught us what it means to truly live.

Exceptional: that she was.

 

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