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…

Two Months: Missing Her

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.

 

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Sunrise


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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.

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

 

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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.

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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.

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

 

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“Remember Me Always”

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.

 

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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.

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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.

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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