Life is an Adventure – Part I

There is a certain freedom that comes after you’ve endured a monstrous loss. When you’ve gone through the worst, is there anything left to fear?

As it turns out, yes. Anniversaries, holidays, social gatherings, polite conversation, fading memories – all terrifying.

For months, June 14th loomed large and ominous. What are you supposed to do on the anniversary of your child’s death?

The answer to this terrible question is as individual as a fingerprint. For me, one thing was clear: We would have to go away. And considering the thing we were escaping from, it would have to be big.

 

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Has it really been one year? .

 

Enter Italy and Switzerland.

Switzerland, because my mom has wanted to go there. Italy, because I found only one guided travel package that would get us to Switzerland around the right time, and it started in Italy.

My spirits lifted as we made the reservations. It would be a grand adventure. Julianna would definitely approve!

 

 

A few months later, I regretted it. Travel requires stamina and an open spirit; grief is exhausting. I felt like spending June 14th in bed.

Fortunately, the deposit was nonrefundable.

 

Julianna’s First Heaven Day

 

The group tour was set to start on 16 June. To accomplish my goal of being AWAY on 14 June, we flew into Milan a few days early.

Breakfast at the hotel looked more like a tea party.

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This may have been Alex’s favorite experience in Milan…

 

We visited the Duomo, Milan’s massive gothic cathedral.

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(It reminded me a little of this picture — the Duomo is not subtle…)

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“Too much is never enough” — one of my favorite Juliannaisms.

 

We lit a candle in front of the picture of the Madonna and Child.

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And learned that it is the only cathedral in Europe that is made of pink marble — who would have thought?

 

 

We also saw a castle.

 

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Sforza Castle, built in the 15th century by the Duke of Milan.

 

 

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Alex did log rolls in a former moat.

 

Then I spent the rest of the day in bed nursing my jet lag and my grief. I listened to recordings of our sweet girl and I missed her, just as I have every second of every minute of every day that she’s been gone.

Like the love that causes it, grief never stops. You have to make room for it, even when you are halfway around the world on the trip of a lifetime.

 

Part II is coming soon…

 

 

One Year

My sweet Julianna,

It’s one year today – your heaven day. This is what I’m choosing to call it, because this is the most important part of June 14th. It’s bigger than my sorrow and shock and pain.

I know you are free now, and gloriously happy — even happier than you were here. Happier in a way that I can’t really imagine. Your body doesn’t hold you back anymore, and you can run, jump and play. I think you are playing with children now. (We adults did our best, but it’s just not the same…) This does my heart good.

I miss you – so much. I know that you didn’t want me to be sad, but I am still bound by this world’s limitations. Better me than you 🙂

You taught me that happiness and heartbreak can coexist, so today I will try for happiness.

 

I’ll wear pink, and I will play with Alex.
I’ll seek out beauty in everything and everyone.
I will be honest but kind.
My hair will be neat.

Most of all, I will be thankful. I got to be your mom. Nothing can take that away.

Until I see your sweet face again,
With a zillion billion kisses,
Mom

 

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Photo: Jennifer Rialtos

 

My thanks to CNN for publishing a piece I wrote about our hospice experience. Because we started following Julianna’s example, we had eighteen beautiful months. She gave us the courage to face our greatest fear.

 

 

Eleven Months

For the past eleven months, I’ve marked time by remembering the past. What were we doing last Christmas and Easter and June and spring…when we were still a family of four?

It’s taken on a more intense timbre of late, because we’re coming to the end, the final weeks of Julianna’s life.

One year ago, I wrote:

Parenting a child with a terminal illness means that your heart is fractured a thousand different ways. One day it will be broken, but until then, you fight to give your child the happiest, most comfortable, most beautiful life you can.

 

And fight, we did. Last spring, Julianna lost her voice, but she gained a microphone….which allowed her to talk even more. She got another wheelchair and it widened her world. She told me that love is a superpower.

And yet, it was the beginning of the end. Julianna’s feeding tube finally failed (it lasted eighteen months – some sort of record, I’m sure) and we were thrown on the horrible roller coaster that only parents of medically fragile children know. We squeaked through, but it took a toll on a little body that had barely any reserve.

Julianna had more strength than anyone I’ve known – but none of it was physical. I see it now: her body was done, and the end was near.

I wonder if it will be like this every spring, this journey back to the last days of my daughter’s life. Will I relive her death for decades to come? Will it gut me always? What is the long term prognosis for a broken heart?

Impossible questions, and there are no satisfactory answers on this side. And when I get to the other one, maybe they won’t be needed because the pain will be obliterated – in the blink of an eye.

Eleven months ago today, Julianna rested in my arms one final time. The pain was indescribable, but I am grateful that she ended her life as she began it: in my arms.

I was able to give her safe passage. Sometimes it’s the only thing a mother can give.

 

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In My Father’s Eyes is a ministry that comforts those who mourn. This painting is beyond beautiful.

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.