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.

 

IMG_4779

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

 

IMG_3286

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

FullSizeRender-42

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


IMG_3303

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.

IMG_3311

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.

IMG_3329

Lots of pink roses

FullSizeRender-41

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.

IMG_3327

 

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.

IMG_4845

 

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.

 

7A010858

“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 🙂

Moon-547

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.

IMG_8327

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.

IMG_0179

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.

Moon-161-2

I miss kissing your forehead, little one…

 

Go play now!

Love,

Mom

 

7A013085

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…

August 25th

In one month, Julianna would have turned six. August 25th 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.)

IMG_2021

5th birthday

This year, August 25th 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 25th, 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.

IMG_1030

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.

Remarkable

In medicine, being “unremarkable” is good. We want our brain scans, nights in the hospital and test results to be unremarkable. Unremarkable means no tumor, code blue, or infection. It sounds boring, but when your child is medically fragile, unremarkable becomes your dream.

As I shared in a previous post, Juliann’s fourth birthday was difficult for me. 2014 was an all out battle against her disease, and we were failing miserably. We tried so hard to do everything right, but we simply could not keep her out of the hospital.

On her fourth birthday, I made a white Hello Kitty cake with pink sparkles. It was my attempt to give Julianna something “normal.” She took one bite, choked and threw up. We shifted from celebration to oral suction and worrying about another hospitalization. We had been battling this all summer. Julianna was losing her ability to swallow, and she wasn’t tolerating feeds through her G-tube (catheter into the stomach that delivers nutrition.) In that moment, I felt defeated: I couldn’t even give Julianna a taste of birthday cake. Was it really too much to ask?

IMG_2542

Fall 2012. Before all her hospitalizations, she could eat cake.

_MG_5480

Aug 2014. The calm before the storm.

Fast forward one year. Things are so different now. In some ways, they are worse: Julianna has lost all ability to swallow, and she is weaker. Her disease still has the upper hand in the physical realm. Her spirit, though, is thriving. She is strong, fearless and happy. It was this way all along, but because I focused all my efforts on attaining “unremarkable”, I lost sight of what is truly magnificent.

Julianna turned five this week. There were a few cakes, but no expectation of achieving what is “normal” for others. This is what happened during Julianna’s remarkable fifth birthday week.

  1. Julianna told her own story, and, in her mind, she has no limits.

When Homie is in town, she sits with Julianna at night. This week, Julianna told a story about their perfect day together:

_MG_0221

Summer 2012. A perfect day with Homie would start with fabulous outfits. I think that this is the inspiration for Homie’s flower dress in J’s story.

  • They share a bunk bed. Homie gets the top bunk, but she is scared of heights, so J must help her up the ladder.
  • In the morning, J puts on a blue dress with a bow around her waist. She wears a blue tiara, feather and bow in her hair. Homie has on a flower dress.
  • They go to the shoe store and each buy two pairs of shoes. J gets pink high heels and blue “low heels”
  • They go to Red Robin for lunch, and J has mac and cheese.
  • Last stop – chandelier store!

In real life, Julianna cannot scratch her nose without help. She has never worn “normal” shoes and it has been at least two years since she has been in a restaurant. In her world, she wears high heels to Red Robin, helps Homie climb a ladder, and she has managed to find a store that stocks just chandeliers. Her world is pretty great.

The future belongs to those who believe in the beauty of their dreams.

— Eleanor Roosevelt

2) She got to play in the sand.

J isn’t able to get out into the world, but she has people who bring it to her. E, her wonderful nurse, brought back some sand from the Oregon coast.

IMG_2023

Oregon coast in a box

You don’t need to be the tide to rise and fall,

you don’t have to be a wave to touch the shore;

just be a little sand-grain and feel them all

― Munia Khan

3) She was extra fancy and completely fabulous

IMG_8716

Aug 2015. Birthday. This was her evening outfit. (Yes, she had an outfit in between her day clothes and PJ’s). 

IMG_8734

Aug 2015 – Day after her birthday. Princesses can have tattooes, as long as they are sparkly and temporary.

IMG_3559

The inspiration of this birthday bouquet was Fancy Nancy. Because all floral arrangements should have feather boas. (Courtesy of J’s incredible palliative care volunteer).

IMG953566

Aug 2015 – Day after birthday. Princess casual includes rose colored specs.

IMG_8815

Aug 2015. For the party, she had tiara, sash and statement necklace.

IMG_2022

Sometimes it’s enough to just have your cake. I know it seems strange to get cake for someone who cannot eat it, but J appreciates fabulousness.

More is more and less is a bore.

— Jean Arpel

4) She brought people together.

Social lives and travel are casualties of J’s condition. We’ve accepted it, but we miss spending time with loved ones.

This year, we were far from alone. All week, people blessed Julianna (and us) with their presence. In this busy, increasingly technology-dependent world, they gave her what is most important: time, love and attention. And, as always, good conversation. I believe that these are the things that Julianna lives for.

IMG_1594

Aug 2015. J and D, our favorite PICU nurse. She helped gets us through some of our worst days.

IMG_8295

Aug 2015. J and one of her handsome baby cousins. His onesie says “Tough guys wear pink.”

IMG_9288

Aug 2015. J with C, her “best friend” from the PICU.

Friendship is unnecessary, like philosophy, like art…. It has no survival value; rather it is one of those things which give value to survival. – C.S. Lewis

Happy Birthday, Julianna!

Will I still be your baby even when I am a queen? — Julianna, age 4

Julianna is 5 today!

IMG_8545

Aug 2015

We are celebrating Julianna’s birthday a few times this year. A few weeks ago, there was a joint birthday cake with brother Alex and her beloved cousin.

A look back:

_MG_8970

2011 – 1st birthday

_MG_2803

2012 – 2nd birthday

IMG_1129

2013 – 3rd birthday

_MG_5481

2014 – 4th birthday

Happy birthday to the most fearlessly happy person I know.

In your five years, you have:

Been a biker chick.

IMG_1949

Summer 2012

Gone blonde

IMG_1680

Winter 2014

Cruised around in the coolest carriage ever.

IMG_1593

Halloween 2014

Been very, very silly

IMG_1150

Summer 2013

Battled your way through way too many weeks in the PICU and, somehow, come out smiling.

IMG_1346

Feb 2014

Every day, you teach us how to live. We love you madly.

I love love. Love is real. — Julianna, age 4