Eight Months

February 14, 2017 / Michelle Moon / 21 Comments

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.

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

Seven Months

January 14, 2017January 14, 2017 / Michelle Moon / 17 Comments

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.

Exceptional

November 1, 2016 / Michelle Moon / 23 Comments

“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.)

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.

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.

Four Months

October 14, 2016October 18, 2016 / Michelle Moon / 21 Comments

It’s harder now.

In the beginning, I was anesthetized by shock. I still can’t believe it, but I can feel and see change all around me. And she is still gone.

The weather has turned, and the stores tell me that it’s almost Halloween — and Christmas. I wonder what she would have been this year. Last year, I pointed to her closet full of princess dresses and asked why she needed a Halloween costume.

“Mom…”

When she said it like that, it meant “Do I really have to state the obvious?”

It was my cue to fall in line. Of course — who dresses up as themselves on Halloween? And that’s why she was a cowgirl last year.

Julianna, of course, didn’t need a holiday to dress up. Here, she is “a mummy in a tutu”

How I miss her clarity, her way of distilling whatever life threw at her (and it was a lot) and championing just the important things.

It’s not that she had a simple mind. She said that her brain was “always going,” and I believe it. She was an effervescent deep thinker. I think that she gave us just the tip of the iceberg, the things she thought we could handle.

I wonder if I do the same thing. Writing has become my way of distilling all the stuff that is swirling around. Lately, it hasn’t been very palatable. It doesn’t seem to fit onto this blog, the pale pink space intended as a tribute my Julianna Yuri.

I want it to be lovely because she was lovely. What she went through, though, was hideous.

Here’s the iceberg, the part I can I can put into words, that is: My world has been rocked and nothing makes sense anymore.

I have shoes and t-shirts that have been with me longer than the time I got with my daughter. Many, actually. I threw some out when I realized this. Why is it so easy to hang onto meaningless things and lose what is precious? (Even in my mini-rage, I can hear her. Mom — don’t throw them away! What did they do to you? )

This is writer’s block with a side of grief: there will be no new stories, no new conversations.

I had a daughter. Everything about her physical presence on earth was a struggle: my pregnancy, six months of colic, the quest to walk, the fight to live, the realization that she wouldn’t, witnessing the deterioration of a five year old body.

The easy thing? Loving her. She was pure joy.

So it comes down to love. It always does, and it saves me. It’s the only thing stronger than the pain.

My sweet Julianna – I love you so much.

***********************

I remember….

How proud Julianna was of being in kindergarten. This is her, reading to her class via FaceTime. (Somehow, I take great comfort in knowing that she learned to read…)

Knowing that your child is loved and remembered is a salve to the rawest of wounds.

Earlier this month, I learned that this is up in Julianna’s school. The toys and program are from her tea party. The note inside reads:

Julianna attended Woodburn Elementary for preschool and kindergarten. Although she was unable to attend school as much as she would have liked, her presence was felt in her classroom. In kindergarten, Julianna FaceTimed with her class every day. Her time with us was much too short, but she will always be a Woodburn Wolf. She left a lasting impression on all who had the privilege to know her.

— Julianna Snow, 2010-2016, Class of 2028

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From Ashes

August 29, 2016August 29, 2016 / Michelle Moon / 27 Comments

Part One: Messed Up

Parenthood is full of firsts: birthdays, words, steps, bus rides, etc. These moments are anticipated and special.

If your child dies, there is a whole new set of firsts, and they are not welcome. You anticipate them still, but with dread.

How, for example, does a parent celebrate (and make no mistake, it needs to be celebrated) their child’s birthday when they are gone?

For me, the answer started with anger.

A few weeks after Julianna died, the funeral home called to tell me that her ashes were ready. The woman on the phone was perfectly nice and professional. Following the usual rules of phone etiquette, I thanked her.

As soon as I hung up, I was mad.

My (lightly edited) first thought: What kind of a crap world do we live in where a parent has to get a phone call like this? This is so messed up.

My second thought/call to action: We’re going on a trip. I’m buying the tickets today.

And I did. And we did.

Part II: Wanderlust No More

From the time I was a young adult, travel was a huge part of my identity. It was one of the things I missed most after Julianna’s disease declared itself to be a joy-sucking beast.

At first, I was resentful. I felt like my wings were clipped and I envied others who could come and go with such ease. (Ease — even if your flight has been delayed or there is traffic. These are healthy people problems.)

Later, when things were into more proper focus, I didn’t care if I ever travelled again. Please, let my frequent flier miles expire. I didn’t want to “get away.” Everything that mattered was in our house. Often, it was contained in a single pink and purple room filled with toys and stories and love.

I knew that the freedom to travel again would come one day, but I wished that it wouldn’t. I didn’t want it. The cost would be unbearable.

Part III: California Playing

The call about the ashes was a catalyst. I had to do something to counteract the horribleness of it all, so I took the plunge and planned a trip.

We decided to spend Julianna’s birthday week in southern California. We needed sunsets (I’ve always been partial to the Pacific variety), friends – and amusement parks. Lots of them.

Pacific sunset. Have sunsets always been this pink and I just didn’t notice?

Love is a superpower. It makes bad guys good. — JYS

Julianna’s favorite animal (if she ever were to admit to picking favorites) made with Steve’s favorite toy.

Ferris wheel over Santa Monica.

We skipped Disney. This is, of course, the most iconic of amusement parks, but I wasn’t sure that I could face it without Julianna. Maybe one day, maybe not.

We did see a castle, though: Hogwarts!!!!!!! One of the highlights of my life 🙂

Part IV: Julianna’s Birthday.

On Julianna’s birthday, we dressed to impress (Julianna, that is. We all wore pink) and drove to Santa Barbara. It’s one of the most beautiful cities I’ve seen, and the drive includes some stunning ocean-hugging stretches of the Pacific Coast Highway. We needed beauty on that day.

We went to the Santa Barbara Mission. More beauty — and peace.

Lots of pink roses

Inside the chapel. I don’t know if it was just the lighting, but the altar looked pink. In the middle, a lamb — another one of J’s favorite animals (“lamby”).

And some levity.

At lunch, our server noticed all the pink and asked if we were celebrating a special occasion. There was a moment of awkwardness as I debated myself: how do I answer this? Do I tell the truth? It’s like dropping a bomb sometimes…

Sweetly and simply, Alex answered. “It’s my sister’s birthday. She’s in heaven.”

The server nodded in understanding, and instead of distress, there was a free birthday sundae. (Ice cream was also needed on this day).

We ended the day watching the sun disappear over the Pacific.

The ocean can make a poet out of anyone. It’s all been said before, and by better writers than me.

I’ll add only this: she was there, and she was free.

“Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.” — Harry Potter and the Prisoner of Azkaban.

“Remember Me Always”

August 5, 2016June 13, 2023 / Michelle Moon / 18 Comments

Remember me always.

Who says this? Certainly not a child.

Julianna said this – a lot. It started when she was four. I don’t remember when I first heard those words, but it was some time after our first heaven conversation.

She said it when she presented me with a flower from the yard (really, a weed). Those words accompanied just about every card and drawing and gift that she gave.

Put it in your room, and remember me always.

So much to remember in this picture: this was her favorite outfit (“my colorful shirt and my colorful skirt”). She loved shaking her head and making those plastic earrings clink. And if you look close, you can see her Korean doll, Young-Hee. She was never without at least one of her friends. Photo by Aubrie LeGault.

When she had a gift for you, it became the most important thing. She needed to share it right away, and had to experience your delight – immediately.

Don’t forget your kisses! Remember Julianna always.

When her nurses left for the day, she sent them out with kisses. She blew kisses, and told them to put them in their purse. It was never just one kiss. It was three or four or twenty. They could take them out when they needed, but they had to zip up their purse so that they wouldn’t run out. And if they did? No problem: the kisses never run out.

Every time she asked you to “remember me always,” it startled. The plea to remember her would make my heart swell and but it would also cut. What made her say this? She was so light, carefree and vibrant. You could feel it as soon as you walked into her room and got swept into her fantastic world.

Just another day in Julianna’s room. Not really, but you get the idea. Photo by Charles Gullung.

Julianna played harder than anyone I’ve ever known, but there was more. She was a deep thinker, an old soul. She talked about death, dying and heaven. And she told us what to do afterwards: remember me always.

And I do. In some ways, I feel like she is with me now more than ever before. I think about her all the time. I talk to her, and I feel her encouragement to give a little more, dress a little brighter and to just go for it (C’mon mom!). I see her in sunrises and sunsets, in pink flowers that grow wild. I see her in other children, and I know that she is finally able to run (or fly?) around and play – with children. Stupid CMT didn’t allow it here, but now she is free.

These just grow — all on their own. God takes care of them.

I miss her – so much.

She told me to remember her always. I do, and I will. Always, until I can see her again.

This week, we received this beautiful note from our friend. This is how he remembers Julianna:

She ruled her kingdom with love and kindness (and a very strong will that her human subjects were pleased to accommodate.)

She learned from history’s greatest princesses, overcame all of their flaws and created a realm that put Camelot and Wonderland to shame. There was no challenge, or evil in her kingdom of love that could not be overcome, and all creatures, great and small had equal opportunity to manifest Julianna’s own character, through them.

Princess Julianna’s imagination was endless. C.S. Lewis and Tolkien would have been exhausted keeping up with her plots. And, as any great princess, she ruled over many realms. Each time I visited, it was a different one, with a vibrant backdrop, and multitudes of characters. With each character so well defined, that if a mere human tried to change the character, they would get “The Look” from the writer.

Julianna’s life is an epic story, within a story. A princess trapped in a tower by an evil dragon, now released by our Prince on a white horse, and placed in a wondrous castle.

Julianna’s Tea Party

July 3, 2016July 3, 2016 / Michelle Moon / 27 Comments

Three weeks ago, we celebrated Julianna’s life in the only way we knew how: we threw a tea party.

Julianna loved tea parties and hosted dozens of them in her almost six years (mostly imaginary, but she was never one to be burdened by reality…). And, of course, she was supposed to go to a tea party at her school the day she took an awful turn.

We wanted a big, beautiful, colorful explosion of joy. It had to be a little too much, because that’s how she was. We knew that children would be there, and we wanted them to be comfortable. Of course there would be sadness and tears, but we wanted them to know that they didn’t have to be afraid, that it was OK to play. Julianna would have insisted on it.

The entire event was held in the lobby of our church. When people walked in, they saw this:

Grandpa came up with this. It was a surprise for me, and it made me smile.

And this:

For more on therapy/awkward unicorn, see the end of my last post.

The tone was set.

Next to the awkward unicorn, there was a table with tons of paper hearts.

The Sharpies were various shades of pink and purple.

We asked people to write a note to Julianna:

And put it on this tree. It’s a Korean dogwood, and it will bloom pink flowers in the spring. It will have a home in our front yard. (I can’t think of anything more perfect than a Korean-American tree with pink flowers. )

Heart notes to Julianna

Probably the most spectacular station (if only for sheer number of items) was this:

As J would say: “Don’t judge! They’re just toys...”

We invited kids (and adults) to take them home.

Julianna’s toys were her treasure, but she was generous. I think this made her smile.

But we made it clear: there are expectations.

If you have one of J’s toys, remember this always!

There was food:

Even though J couldn’t eat, she talked about food all the time. No egg salad (or other smelly food) was allowed.

And a cupcake bar:

And some of our favorite pictures:

Captions were done as though it was a museum display. Pink easels were courtesy of Grandpa.

Julianna was planning to be a Romanian princess for her school tea party. The dress was displayed here:

The little silver cup was one that she decorated to take to the school tea party. The hanging teapots — Grandpa again.

Julianna’s class made these wonderful decorations:

You can also see their yearbook page, and it includes J’s picture.

This was Julianna’s Every Flavor Teapot. In her tea parties, she only served fantastic and special flavors such as strawberry, marshmallow and chocolate pudding tea.

The drawing is the one J decorated for her school tea party. Every color so that none felt left out.

We asked people to write down their favorite tea:

Julianna always had a killer manicure, so we had to have a nail bar:

I saw many guests running around with ten different colors on their fingernails. They looked happy.

And her dresses…they had to be there too:

I’m not sure how many attended, but it was a lot. Dear friends flew in from all around the country. It touched our hearts to see the love for our Julianna.

We sang J’s favorite song (“Hark the Herald”). We read the last three pages from Julianna’s Adventures — the ones that tell us that she was not afraid. We watched a video presentation that always makes me smile and cry. My God, she was beautiful…and so happy. Steve talked about why Julianna loved her toys so much — it was all about making a connection. I read a letter to Julianna. It was about love.

People were surprised that we pulled it off . Everything was on a grand scale, and there were lots of details. For this, we have our wonderful friends and family to thank. It was a labor of love, and Julianna would have been proud — and delighted. It was perfect.

******************************************************************

After the tea party, my family went on a little adventure.

We got some ice cream.

And went to Harper’s Playground:

The ride took longer than three seconds, though, and we didn’t stop for lemonade.

Note: if you have no idea what I’m talking about, get a copy of Julianna’s Adventures. It was close to her heart, and all proceeds will benefit CMTA.

Overwhelmed

June 24, 2016June 13, 2023 / Michelle Moon / 20 Comments

It’s the only way I can describe it. The ten days since Julianna passed have been intense, and it feels like a lifetime.

It’s true what they say about the waves of grief, but it’s from an erratic ocean, one without pattern or rhythm. Sometimes the waves are massive and incapacitating. At others, they are just a trickle – a poignant memory, then an ache.

We took J and A to the Oregon coast in spring 2014 – before her 2nd hospitalization that year. It’s the only time she got to see the ocean. She was still strong enough to be in a hiking backpack.

The ache is the hardest part. The intense pain is searing, but it goes away. It’s like throwing up – horrible, but there is relief afterwards. The ache stays and it gnaws and it drains. I can’t believe that she’s gone.

There has been comfort too. I want to share the things that comfort us, because I know that others are hurting with us.

Take comfort in this: It hurts so much because the love is so great.

It’s the price we pay for succumbing to love, and I’ll gladly pay it – a million times, over and over again. The only thing worse than the pain now is imagining a world in which Julianna had never even existed. Or wondering if I held back, left something on the table to protect my heart. I didn’t, I’m grateful, so I’ll take the pain.

Take comfort in: the words of a child.

A few days after Julianna died, Alex said this: “You know the morning after Julianna died and Daddy was on the phone? The people on the phone were crying, and it made me feel good.”

Alex, age seven, has realized that sharing in someone’s grief is a gift. Crying tends to make people uncomfortable – but why? If you have loved and lost, there will be crying and tears. It’s not a big deal.

It is an act of love to share in someone’s grief. For us, anyway, it helps to know that Julianna was loved, and that others are sad with us. It tells us that she mattered, and that she is not forgotten.

Take comfort in….the Therapy Unicorn.

I promise to do an entry dedicated to the Tea Party. For now, let me introduce you to this guy. He’s one of the first things that people saw as they walked in.

We recognized that there would be sadness at the Tea Party – and because it was Julianna’s Tea Party, a Therapy Unicorn made perfect sense.

This unicorn was a gift to Julianna from a dear family friend. He came from a truck stop. (I’m serious). Julianna met him during her last semi-good hours. He was introduced to her as a talking, face-touching unicorn.

True to form, Julianna called it:

J: That unicorn is awkward.

This is the last picture we took of Julianna. The unicorn was a perfect TumbleForms pillow.

A massive pink and purple unicorn who hails from a truck stop? Yes, a little awkward. He has, however, become a comforting presence. He has mass and weight. He reminds us of her and makes us laugh at the ridiculousness of it all.

I got a Julianna mani last week so that it’d be perfect for the Tea Party – b/c you can never have enough glitter according to J. I drink my coffee-flavored tea every morning in a tea cup she gave me for Christmas last year. The verse inside: “Your care has preserved my spirit.” Job 10:12. How did she know? I don’t think she knew, not the details or the timing, anyway. But it fits. So amidst the great pain, there is peace. #mamagrief #teaforjulianna #loveisasuperpower #juliannasnow

A photo posted by Michelle Moon (@julianna.yuri) on Jun 22, 2016 at 5:28am PDT

J’s Tea Party Video

June 20, 2016June 20, 2016 / Michelle Moon / 31 Comments

This is the video presentation from Saturday’s tea party. My favorite part is the clip of Julianna coming home from the hospital: It’s a beautiful party. I love all this stuff.

It’s a glimpse of heaven.

Julianna’s Tea Party — “Rainbow” from Michelle Moon on Vimeo.

Julianna

June 14, 2016June 14, 2016 / Michelle Moon / 301 Comments

Dear friends,

Our sweet Julianna went to heaven today. I am stunned and heartbroken, but also thankful. I feel like the luckiest mom in the world, for God somehow entrusted me with this glorious child, and we got almost six years together. I wanted more time, of course, and that’s where the sadness comes in. But she is free now.

I will have more to say later. For now, this is what is in my heart.

Today, I just want the world to know that there was a girl named Julianna.

She was a bright light. An old and delightful soul.

She loved love, and “everyone except for bad guys.”

She was an unabashed princess and she elevated everyone around her. We were all kings, queens, princes and princesses by association.

She urged us to play, to really focus on just playing. She encouraged us to be our most colorful and fabulous self. (One of her last words to me: “What’s that?” to my gray sweater…)

Her mind was “always going.” It took us to a beautiful world without limits.

Her words were startling. Sometimes I thought that people wouldn’t believe the conversations I recorded. How could a five year old know those things? But if you spent any time with her, you knew.

She fought hard to be here, harder than I’ve seen anyone fight, with a body that was too frail for this world. She was so brave — and I hated that she had to be so brave. This last fight was not to be won by her body. It was tired, and it needed to rest. And when it did, she was comfortable.

Today, she is free. Our sweet Julianna is finally free.

Please do not forget her. She lived, she was real, and she mattered.

I cannot believe that she’s gone. Already, I worry that some of her has faded, and I need to remember all of her. The way her warm little hands felt, the hugs she would give by asking you to drape her arm around your neck. The kisses she blew. They never ran out.

Please remember our precious girl: she was Julianna.

Julianna Yuri Snow

25 August 2010 – 14 June 2016

Feature photo and photo on right by Audrie LeGault.