As a rule, I speak publically only when forced and medicated. Last night, I was neither, but I spoke on a big stage in front of a big crowd.

I did it because I had the opportunity to support a place that brought joy and beauty to Julianna during her last year. If you have read Julianna’s Adventures, you know the place: Harper’s Playground.

A few months ago, Harper’s dad asked me to come to a fundraiser for Harper’s Playground. They want to build these places everywhere. He learned of Julianna after her death, and was moved by how much she loved the place. It motivated him, he said, to do even more. He asked if I could talk about what it meant to Julianna.

I said yes without thinking (because thought isn’t required when something is so obviously right.) And I talked about the importance of Harper’s Playground in the only way that felt right: I told the story the way I imagine Julianna telling it.

Once upon a time, there was a girl named Julianna. Like all children, she loved to play. She needed to play. When she went to the playground, her favorite thing to do was swing.

Age 2

Julianna had CMT. It made her nerves work not so well, and she had trouble walking. To fight the CMT, Julianna had to do a lot of things: treatments and therapies and “chores.” She went along with it, but it was usually boring. Julianna didn’t like boring. She just wanted to play.

When Julianna was three years old, things got serious. The CMT got stronger, and Julianna’s body got weaker. She stopped walking, and she stopped standing. She had trouble just sitting up.

Her parents were very sad. They tried to keep fighting the CMT with more therapies and treatments and chores. They thought that if they worked harder and did more chores, Julianna would get better.

It didn’t really work, and they got even sadder.

One day, Julianna’s physical therapist asked if they wanted to meet at Harper’s Playground. She told them that it was a place where everyone could play. So they came here, to Harper’s Playground. They did some therapy, but Julianna didn’t even notice. She just thought that they were playing.

It didn’t matter that she had trouble sitting up. She could still swing.

For the first time in a really long time, they all had fun.

Julianna asked to go back, of course — again and again. Her parents gave a lot of boring adult reasons why they couldn’t. Mostly, they told her that it was just too far.

Julianna understood — kind of. The CMT was getting even stronger, and sometimes it was hard just to leave her room. But she couldn’t give up. There had to be a way. She thought and thought and thought, and she come up with the perfect idea. She shared it with her friend Christine, and they made it into a book.

You see, Julianna had lots of great ideas. Her mom called it imagination. Julianna just thought that it was the way things should be. For example: what if it didn’t take a long car ride to get to Harper’s Playground? What if they could get there by bike?

She’d lead the way, of course. In her world, she’d have a bike that was big enough for everyone. And a trip to Harper’s Playground would take just three seconds.

Problem solved.

About a year after Julianna first went to Harper’s Playground, the CMT got really bad, and Julianna went to heaven. Her family was really sad again, but they were happy that she was free. They tried to remember this when all of their friends and family came to celebrate her life.

After that big party, Julianna’s family came back here, to Harper’s Playground.

They saw other families spending time together and playing. They played too, even the adults. They knew that Julianna was there too, and that she was happy to see them in the place that she loved.

After the talk, I walked over to the big saucer swing, the last swing that Julianna was able to use. Harper’s Playground is for everyone, so I knew that I could use it too.

I sat there, and I missed her. I thought of how hard it was for Julianna here, being stuck inside a body that made it hard to play. The familiar mix of sad and happy and hurt tears came again. I miss her so much. Harper’s Playground is such a beautiful, tangible legacy. What will Julianna’s legacy be? Her life had to mean something — I mean, I know it means something, but I wish I could see it and feel it too…

I felt the saucer swing move. I looked over my shoulder and saw a little girl. I had her by at least a hundred pounds, but she had come to give me a little push. It made me smile.

I got off the saucer swing and let the little girl on. Julianna had spoken to me again, and the message was clear: Let’s play!

P.S. A big part of Julianna’s legacy will, of course, be the fight against CMT. More to come on this soon. For now, please check out — and consider giving to — the Awkward Unicorn Walk in Portland, OR.

“Let’s Play”

September 26, 2016September 26, 2016 / Michelle Moon / 3 Comments

Mega-Old

September 10, 2016September 11, 2016 / Michelle Moon / 18 Comments

I’m breaking with tradition this year. It’s my birthday today, and I’m not going to ignore it!

I decided it on my walk this morning. (Walk, not run, because my now forty-four-year-old left ankle is still bothering me…)

I usually ignore my birthday for all the unoriginal reasons. I don’t like attention, and I am now (to quote my high school friend – you know who you are) mega-old. Completely middle-aged, and a full-on ajumma.

But this is what I realized this morning: I’m 44 years old today, but not even three months old as a mother who has suffered the ultimate loss. At times, I have felt like I was a million (the PICU is a super-ager, and I have done my time.) So really, why does it matter?

It matters, because Julianna only got five birthdays. It matters because life here is short and unpredictable, and we should celebrate when we have things to celebrate. And even when it seems like we don’t have anything to celebrate…we do. So celebrate it anyway.

I wondered what today would be like, my first birthday as Julianna’s mom – without Julianna. She would have made a card for me. (Rather, she would have directed someone to make the card, but the message would have been all hers). Maybe she would have given me another doll. (She had a hard time grasping the fact that Homie only bought me ONE Barbie. She found it cruel. And it was, mom, it was. A child cannot live on books alone…)

Julianna gave me so many gifts. Today, her gift is reminding me, yet again, that life is to be celebrated. And we gotta do it — with humor and style.

Here’s the humor:

Earlier this year…

I am looking at one of Julianna’s fancy dollhouses. It came from a book, and it’s made of cardboard, but it’s intricate and beautiful. I don’t have any pictures of it, but it was this one.

M: Wow, Julianna. This is so cool. We didn’t have stuff like this when I was your age.

J: looks surprised. Did you not have stores?

And the style:

I don’t know what we did on my birthday last, year, but this was Julianna exactly one year ago. She’s with Korean Barbie , Michelle Kwan Barbie and Make-A-Wish Barbie.

“Too much is never enough.” — JYS

And because gifts are better shared:

A dear friend of a dear friend created this amazing portrait of Julianna. She used my favorite picture (Julianna thought that she looked her “prettiest” here), and absolutely nailed it. I think that this is what she looks like in heaven.

A hand-cut creation by Oscar’s Printshop. I think that her work is beautiful.

Me: Isn’t this cool?

Steve: examines it and nods. Is that the poem I read, the one by that man…

Me: It was me! I wrote that!!

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.

Happy 6th Birthday, Julianna

August 25, 2016 / Michelle Moon / 38 Comments

Happy birthday, sweet Julianna!

I wonder what you are doing today? I wonder what you aren’t doing today?? Maybe that’s a better question, because I think that you are probably very busy doing all the things that you could only imagine here.

Alex thinks that you’ve taken up taekwondo, and that you’re already at the highest level. No black belt for you, of course: you have a pink belt with a sparkly purple stripe🙂

Alex just got his blue belt – we know you’d be proud. He has imagined all kinds of special moves that you do now…

Daddy thinks that you are flying.

Do you remember this? You didn’t want to do it until Daddy said you could add the bows. We think it’s an awesome picture…

I’m not sure what you are doing today but I know that you are happy, even happier than you were when you were here. Your joy was beautiful, and it was contagious. I can only imagine what it’s like now.

I’m glad that you can swing again, baby girl. You loved it so much…

You wanted me to not be sad, and to remember you always.

I’m sad sometimes, but I think you understand. You’re not bound to this place, with its obstacles and emptiness. You know that things here are fleeting. I know it now too, and am better about putting things in their proper place.

(I read and watch a lot less news now, you’ll be glad to know. You were SO right — how did I have the patience for it before??)

Thank you for all the Julianna sunsets, and for all the people who let me remember you. Many of them never got the chance to meet you, but they have taken the time to know you…which means that they love you. It helps to heal my heart, knowing that you are loved and remembered.

With everything in me, I love you. I’m so glad that we said this to each other, dozens of times, every single day. Thank you for showing me how to live without regret.

I am so blessed to be your mom.

Happy birthday, my darling girl.

Kiss kiss, and big group hug.

I miss kissing your forehead, little one…

Go play now!

Love,

Mom

We’ve been going on some adventures too – and taking you with us. In our hearts, our thoughts, and in many other ways. Do you remember this pony? Her mane and tail are still braided, just as you left it…

Two Months: Missing Her

August 14, 2016August 14, 2016 / Michelle Moon / 26 Comments

Disclaimer: You know those cooking shows where they stick something in the oven and almost simultaneously bring out the perfectly baked result? I hope that this doesn’t read like the blog equivalent of “the magic of television.” The last thing I want is to make grief look quick and easy. It’s the exact opposite.

Julianna has been gone for two months today, but I have been grieving for almost five years. It started when Julianna was one. I grieved for missed milestones, then lost milestones (infinitely harder)…and it just went on. Grief will be my constant companion, so I might as well get comfortable with it.

Part I

Sometimes, the rationalizations, responsibilities and remembrances aren’t enough.

I just miss her. In my marrow, in my heart, my mind, my soul, and in my gut. In the deepest part of me, I miss her.

They say life goes on, and so it does. The sun rises and sets each day (thank you for all the pink, God and Julianna…) and there are bills to pay. There are diseases to fight and legacies to shape. A family to love, friends with whom to reconnect, patients to help. It’s all important, and I am blessed – truly. I am grateful for all of this.

Sunrise

Sunset. Julianna’s windchimes.

Sometimes, though, the horrible, glaring and massive void has to be acknowledged: I had a daughter, and she was pure joy. She’s gone now, and I will never see her again – not on this earth. It’s messed up and it’s wrong. I don’t like it.

There, I said it, and I feel better. I can spend the rest of the evening being semi-productive and appreciating life. I am, after all, Julianna’s mother. She would expect nothing less.

(But I reserve the right to come back to this place when I need. I miss her all the time. Sometimes, I have to take time – and just miss her. )

Part II

The remembrances do help.

A few days after Julianna died, my cousin sent me all the pictures she could find. I had asked for them, but I wasn’t ready to look at them until this week. (The remembrances hurt sometimes too, you see…).

When Julianna and Alex were almost two and four, they were asked to be in my cousin’s wedding. J was at the peak of her strength then, and had started using a walker. I hoped desperately that she’d be able to walk down the aisle with it.

It didn’t happen, but we made do. We decorated a wagon, and she sat in a cloud of white tulle and lavender petals like the princess she was, her beloved Alex leading the way.

She was proud and delighted. So was Alex.

For some reason, we don’t have pictures of this moment. No one I’ve asked has any either.

Among the pictures my cousin sent, though, was this — from the rehearsal dinner.

After the wedding, we went on one of those duck-boat tours. It was a perfect July day in Seattle.

I remember the joy and wonder in Julianna’s face as the bus became a boat and we came onto the sparkling water of Lake Stevens. It’s one of my happiest memories.

Part III

Do you have angels? I have angels…

— Julianna

When we went through the worst, there was always a light.

One of Julianna’s nurses told me to look for this light. Even if it was tiny, we needed to cling to it, and it would grow.

Sometimes she was our light. When she took care of Julianna, we felt safe. (Think about what that means when your child is in the ICU and struggling…). She was the kind of nurse who, if something happened to go wrong on her watch, we would have been at peace knowing that Julianna was in the best, most loving hands. We trusted her that much.

Yesterday, I had the privilege of attending her wedding.

Amidst the light and the love, Julianna was there. I was sure of it.

“Remember Me Always”

August 5, 2016August 5, 2016 / 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.

And then there’s this: Julianna in the hospital, after the worst was over. She had been through hell, and decided that it was time to dance. I remember, and I learn from this amazing girl.

And remember this: you have ONE WEEK to get this Julianna-inspired t-shirt. All proceeds go to CMTA. The store closes on Friday 8/12/16.

Order here:

http://getshirtsfast.com/superpower

Free photorealistic mock up

August 25th

July 25, 2016 / Michelle Moon / 15 Comments

In one month, Julianna would have turned six. August 25^th will never be just another day, especially this year.

When your child has a monstrous illness, birthdays can be tricky. I’ve had some marked by tears and bitterness (they mix horribly with cake) and others full with joyful gratitude (much better!). Last year was a good one, probably the best. It was special, and we knew it. (Think, for a moment, what your life would be like if you believed that every day is precious, and not a given. This is how you begin to truly live.)

5th birthday

This year, August 25^th will obviously be different. I have thought a lot about it. How will it be? What should we do?

Sadness is inevitable, but it can’t be the overriding theme. I’m not trying to deny or repress or not “deal” with it. It’s this: Julianna would not have wanted it that way.

Julianna knew loss. She lived with a body that continually let her down, but she never felt sorry for herself. I don’t think that she even understood the concept. This didn’t comfort me at first. In fact, I resented it – why did she have to be so brave?

I’m not sure when it changed. All I know is that things got so much better after I stopped obsessing over “fair” and “right” and focused instead on the magnificent child right in front of me. She just wanted to play and hug and have fun. Above all, she needed to be loved and to give love. When I succumbed to her love (really, God’s love), everything became brighter and sweeter. Hope returned, and this is why we are standing today.

I didn’t put it all together until I wrote a letter to Julianna. After she died, I had an overwhelming urge to write — something. I needed to tell her that I was OK. I didn’t know why I was OK, but once I started writing, the answer was clear: LOVE.

And this, my sweetheart, is your greatest gift, your legacy. More than anything else, you loved. Your love was so expansive, so thorough, that it gave you a lightness and joy that was other-wordly.

Love is a superpower. It is the reason and the answer. It keeps broken hearts beating; it turns judgment into kindness, fear into courage, grief into joy; despair into hope. It is the greatest.

On August 25^th, Steve, Alex and I will each do something that reflects and spreads Julianna’s love. We’re not sure what it will be just yet. It will probably be a small but personal act. Julianna made people feel special, and she had a way of giving you just what you needed – even before you realized that you needed it. It seems like a tall order, but we have a month to figure it out.

Please join us. Do something on 8/25 that would make Julianna happy and proud. It can be big; it can be small. It doesn’t have to cost a dime, but it will require kindness, some time, and perhaps some creativity. If you have a great idea, post it — on the comments, or the Love is a Superpower FB page. Or, keep it a secret (Julianna liked those too…).

Just do something.

Summer 2012. Not her birthday, but the hats were fun.

(And buy a shirt too🙂 Available only until 8/11 — $20– all proceeds go to CMTA.

Free photorealistic mock up

The Next Thing…

July 21, 2016 / Michelle Moon / 12 Comments

One of the things that keeps me going these days is thinking about Julianna’s legacy.

It’s a bit daunting, because her legacy needs to reflect who she was: bright, lovely and startling. Ridiculously funny. A force. Powerful, pure love.

I have ideas, and many of them are grand. They require resources that seem out of reach. Money and logistics aren’t my thing, and you need both to start a movement.

If I have learned anything, though, it is this: if you allow it, God will exceed — everything. Your expectations, pipe dreams, the fantastic stuff of your imagination, the ache deep within — all of it. It won’t be as you planned, and it feels uncomfortable sometimes, but it will be amazing in the true sense of the word.

So we start with Julianna’s words: Love is a superpower.

And we’ve made a t-shirt:

This is a pre-order. IT IS ONLY AVAILABLE UNTIL 8/12/16, so BUY IT NOW!!! It will ship on 8/26/16.

http://getshirtsfast.com/superpower

A large part of Julianna’s legacy will involve, of course, fighting CMT. All proceeds from this t-shirt will go to CMTA.

And there’s a Facebook page: Love is a Superpower.

Right now, the FB page is like her legacy: a work in progress. Please join and help us shape J’s legacy.

P.S. About the t-shirts. To answer your anticipated questions,

Why are they gray??

There is precedent for this. This was one of J’s favorite dresses:

She asked for it often, saying: “If you want casual, you have casual. If you want fancy, you have fancy!”

So, in order to have wide appeal, the shirt is mostly casual and just a bit fancy. Hopefully there will be more shirts to come, and there will be variable ratios of casual:fancy.

I don’t live in the US. Can I still buy the shirt?

The shirt will also be available in: Canada, Netherlands, Australia, Singapore, India, U.K., Germany, Malaysia, Philippines, Belgium, Spain, Japan, Mexico, South Korea, Switzerland, France

(The blog gets the highest number of page views from these countries. If you want a t-shirt and live somewhere else, let me know. We’ll try something.)

One month

July 14, 2016 / Michelle Moon / 14 Comments

I haven’t been very organized about commemorating Alex and Julianna’s little milestones. I didn’t take pictures of them every month. I see these photos a lot, the ones with little signs that tell us how many months old a baby is on a certain day. And I love them — was that not around when my children were babies? Or were they, and I just didn’t notice?

Today, it’s been a month. One month since I was able to hold Julianna and kiss her forehead.

It seems perverse to remember and document the one month anniversary of Julianna’s death when I didn’t document the one month anniversary of her life. I have no idea what we did that day.

I thought about doing nothing, but that didn’t seem right either. How can I not remember and acknowledge it, this horrible loss?

It doesn’t really matter, of course. It’s just a day, and I’ve been acknowledging this horrible loss – for years. As difficult as this past month has been, the years before it were much worse. (Not the glorious eighteen months in hospice. Those were a gift, better than the most wonderful dream.And yes, “glorious” and “hospice” go in the same sentence — I’ll write more about that later.)

The time before that was the hardest. I knew, but I denied, and I struggled. Fear permeated everything then, and with it came despair.

I’m not afraid now, and I wonder if I can be again. There is sadness, of course. I miss her – so much. But there is also joy and gratitude. When I was afraid, I could not begin to imagine that these would be in the mix, and that they would keep me afloat.

Though Julianna was the girliest of girly girls, I imagine her in pants and sneakers now. She is always running, doing all the things that she couldn’t do in this life.

This weekend, Steve and I received a beautiful gift. I have been wanting to get a little angel for our yard (to put near Julianna’s tree when it gets planted). Kathy, the gifted artist who did Julianna’s princess room furniture, just “happened” to have the perfect one:

It looks like her, and it is clothed. (A lot of these cherubs tend to be partially draped. J valued modesty.) I thought it was perfect, but wished that it was a bit smaller, a sitting angel perhaps. Then Steve came up with the perfect response to my unspoken thought: “She would have wanted to be standing.”

This morning, a Julianna sunrise. For the last month, I’ve gotten up every morning before the sun, but it hasn’t been pink. It’s a pale pink, for sure, but according to J, the perfect shade of pink is “like a pig” — so I think that this counts.

I tried to find a picture of J at one month, but couldn’t. Instead, this is one of my favorite memories: the way Alex made her smile.

PS — a Cool New Thing:

These lovely items (a bookmark and a 3×3″ card) were made by the wonderful Oscar’s Print Shop. We printed a bunch, and will hand them out everywhere.

If you would like to do the same, please do. You can download each image individually to get a high-res pdf.

“There’s Treasure Everywhere”

July 10, 2016July 11, 2016 / Michelle Moon / 27 Comments

I go treasure hunting these days.

It’s mostly on my laptop. I can spend hours bringing up old files and photos. They say that a messy desk is a sign of creativity. I agree, and extend that premise to my virtual desktop. I search and search, because I know there is more Julianna in there, more conversations, pictures, and stories. I’ve found some things, including entire blog posts I never published. They didn’t feel right before, but they make sense now. (I’ll share in due time.)

They are all treasures, these pictures and transcripts. They’re wonderful, amazing (in the true sense) and heartbreaking : truly bittersweet. Our whole journey with Julianna has been that way.

*********

This weekend, Steve and I had our ten year wedding anniversary. We almost never make plans for these things. Too much expectation tends to disappoint, and we’ve also been a bit occupied. Now, we have more freedom. Unwanted freedom, but freedom nonetheless.

We decided to take an overnight trip to Oregon wine country. Most of me didn’t feel like doing it, but sometimes you override feelings. I’m so glad we did. She was everywhere.

There have been lots of things lately that seem strange, or by chance. Coincidences. And they keep happening.

On Julianna’s last good Sunday, she picked me a little sprig of lavender.

I kept it in a shot glass (I know, I know – I can hear J’s admonishment too) and have been searching for the perfect little bud vase. I’ve been afraid that it would dry up and fall apart.

On our way back, we “happened” to pass by a lavender festival and I found this:

Like she wanted, I’m keeping it in our room, and I will think of her always.

Julianna’s last flower gift to me has a perfect home now. And if it falls apart, no big deal. J would say that it’s now playing with friends.

We also stopped at a favorite Thai restaurant. This was my rice:

We’ve been there many times, and the rice has never come out like that.

When we got up to leave, I noticed this picture over our table:

Pink! J especially liked it when there was a set: “mommy and baby.”

Julianna’s favorite animal, in her favorite color. I don’t know how long this painting has been there because we usually sit at the same table and look at the same things. This time, I “happened” to pick a corner booth.

There was more.

It’s the height of travel season, and we only started planning about ten days ago. Everything was booked. Just as I resigned myself to trying again next year, I “happened” to find a beautiful B&B with an opening.
Steve met the innkeeper first and told me that Julianna would like her glasses and shirt – can you guess why? She wore another pink shirt the next morning. I asked her if pink was her favorite color, and she looked puzzled. It’s not, and it wasn’t intentional. It just “happened.”
We stopped by a coffee shop, and there was a little table of sparkly jewelry. I browsed while Steve ordered coffee. After a few minutes, a kind woman approached me and introduced herself as “the jewelry lady.” She has a day job, but her passion is gems. She likes to hunt for bargains and pass them along. She wants to put sparkle in everyone’s life. Sound familiar?

There’s even more, but I’m stopping here because the post is getting long. Thanks for continuing to read, and for your encouragement.

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One more thing: I’m still not watching or reading the news, but I know there’s much pain and strife and darkness. The great German word Weltschmerz (“world pain” – feeling the world’s heaviness) comes to mind.

I have felt that sense of hopelessness before. Maybe that’s why I’ve unplugged from things I can’t change. It’s too complicated, too big, too much.

And then I think of a little girl who could barely leave her room. She needed a microphone to be heard, and she was more helpless than a newborn baby. She couldn’t do anything for herself…but she loved. In her tiny little universe, she loved, extravagantly and without limits. Her love changed lives.

Big changes can start with small acts, from people who have no outward signs of power.

I can’t wait to see what she can do now.

Love is a superpower. It makes bad guys good. — Julianna Snow, age 5

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. – Philippians 4:8

P.S Two more treasures.

J’s first daycare provider sent me these pictures.

A snippet of a conversation from Julie, her hospice volunteer. We call her “our angel.”

J&J. Playing, with pretty things.

J&J are playing. Out of the blue:

Julianna: Do you have angels? I do.

Julie: Yes, I think I do.

Julianna: Good. Let’s play!