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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Four Months

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.

 

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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.

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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…)

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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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We Are All Awkward Unicorns

Earlier this year, CMTA asked for people to organize walks all around the country for CMT awareness. “It would be so great to get Julianna out for something like this,” I thought. I knew she’d love it, but it was the same old story: stupid CMT. It was hard to even leave her room.

After she died, I contacted CMTA. “We want to walk,” I told them. We didn’t have the energy to organize it, but if someone stepped up, we would be there. We’d bring Awkward Unicorn (a Julianna surrogate?) and walk – for her, and because of her.

And it happened. Yesterday, in a park with soaring trees, we gathered for Portland’s first ever CMTA walk.

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The weather  last week was quintessential gray and rainy Pacific Northwest — but yesterday we got a break.

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We had a poncho ready for AwkUni, but didn’t need it. 

I said a few things, and learned many more:

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It takes guts to wear a tutu! (Especially if you have one…) But compared to what Julianna had to face every single minute of every day, it was nothing. 

 

Believe it or not, this was the first time we came together — in person — with the CMT community. We’ve known for years that Julianna had CMT, but didn’t think to reach out. Yes, we were very busy keeping Julianna alive, but it was more than that.

Our CMT is like a freak of nature. In two generations, it went from almost nothing (Steve) to deadly (Julianna). What does that? (We will have an answer soon – I know it). So even though we had a diagnosis, I didn’t feel that we fit in with the CMT community.

Yesterday, I met and learned of others with CMT who also don’t feel like they fit in. There are over eighty different types of CMT, and there is a wide range of severity even within the same type. Many are the first in their family to be diagnosed. So…none of us “fit in.” We are all awkward unicorns.

CMT is a frustrating disease. It’s hard to explain, hard to predict, hard to diagnose — and I say this as a neurologist and a mother who has suffered the ultimate loss because of this awful disease.  I have wanted to throw my hands up in the air many, many times. Except that it killed our daughter — so I can’t. I won’t.

My plea (to the world, but especially to the CMT community) is this: We are each other’s best hope. If we come together, we can beat this thing. If we don’t act, who will?

Whatever you can do — walk, talk, write, give, get people to give, educate, be educated, dye your hair blue — do it. Even if it feels awkward.

 

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Heavy lifting is best done TOGETHER.

Huge thanks to Ori and Debbie (and family) for all the work you did to make this walk possible.

 

 

 

Stand. to End CMT

 

J: Does CMT affect my heart?

M: No. Your heart is perfect. 

J: Hooray! Thumbs up for my heart!!!

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I miss that heart, so very much.

If there is anything good that come out of grief and anger, it is action — and a renewed sense of urgency. CMTA shares this with me, and they launched a new campaign today: Stand and Give 5.

 

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Age 2. With the help of physical therapy, orthotics, Daddy and pink socks — she stood.

 

 

Stand: because, though CMT robbed Julianna of the ability to stand physically, she never stopped standing — to fight CMT.

5: because she graced us with five magical years.

Please visit Julianna’s Stand and Give 5 page here:

If able, please give whatever you can. Increments of 5 are great – $5, $50, $500 — whatever you can. Then tag 5 people and ask them to do the same. And if you are a social mediate, post a picture that says why you stand.

 

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#EndCMT, #StandandGiveMe5

 

 

You have been so generous, and I still hate asking for money. But this disease needs a breakthrough. Please take a stand — for Julianna.

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.

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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.

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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.

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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.

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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?

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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.

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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.

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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”

Mega-Old

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.

 

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“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.

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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!!

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From Ashes

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.

 

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

 

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

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


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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.

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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.

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Lots of pink roses

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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.

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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.

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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.

 

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“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

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🙂

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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.

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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.

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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.

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I miss kissing your forehead, little one…

 

Go play now!

Love,

Mom

 

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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…