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.)

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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.

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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.

The Next Thing…

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:

Monster Press Mock Up

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

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:

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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.”

 

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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.

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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.JYLongJYLongbackJYSquarebackJYSquare

“There’s Treasure Everywhere”

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.

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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.

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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:

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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:

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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:

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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.

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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.”
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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!

The Other Side

I’m on the other side now, in the club that no one wants to join.

I have grieved before, but this is different. What we have done these last three weeks – what we have had to do – goes against nature. But it happened, and we go on, not knowing what that really means.

I still can’t believe she’s gone. I know she is because the house is ridiculously quiet now. It wasn’t just the soft hum of her machines: it was her voice. “Mom! Mom!” As soon as I walked in the door, she called for me. Sometimes it was loud (thanks to the mic), and often it was very soft…but I always heard it. She knew that I needed to shower after work before I could touch her (no germs allowed), but she insisted on seeing me and sharing the latest thing. It could be a new toy, or an old toy doing a new thing. A new hairstyle or dance move. There was always some new drama (with her toys), a new observation, a new word. The supply was endless, just like her love.

And that’s the hardest part – knowing that there will never be a new anything. What I work on now is memory, legacy, meaning – some new direction that honors who she was. I will share this with you when it takes form. I want something big. Julianna didn’t do anything timidly or half heartedly, and I won’t either. Not anymore.

In some ways, I think that I’m doing too well. I went back to the office after one week. I could have taken more time, but I wanted to go back. It’s good to focus – hard – on something else. I’m more patient now, a better listener. It will make me a better physician (and person), I think, but the price was too great.

I know now what heartache is. It is a literal ache. I have felt it before, but it was fleeting. This unnatural event has made it settle. It’s a heaviness, and it’s oppressive. I have to concentrate to take a deep breath. It doesn’t leave, this physical ache, until my mind focuses on something else. And when the defenses are low, it’s not possible. So I go to sleep, but not for long. My body clock is reset, it seems, and it doesn’t want me to sleep much. This horrible loss has to be acknowledged and worked out, so it demands that I grieve.

They say that anger is part of grief, and it’s true. I’m not mad at God, and I’m not mad at any person. I am mad at CMT, mad at our situation. I am grateful for the eighteen beautiful months we had in hospice – it was longer and more delightful than anyone imagined. It was a gift. But I wish that we didn’t have to make that choice.

Choices bring me to the here and now, and they demand action versus languishing in the “what ifs?”

We love talking about Julianna, so we do it – a lot. Little Alex continuously wonders out loud what she is doing and shares new memories (Julianna had a lot of “secrets”, it seems, and they were adorable!). This weekend, I chose to make cauliflower fried rice, the last meal Julianna watched me make. I wondered if it was wise (should I really be chopping vegetables with eyes full of tears?), but her voice popped into my head: Come on, mom. You can’t cook many things. You have to make it!

 Some things hurt too much and I choose to ignore them – for now. Recordings of her voice, video clips…she was so alive. It’s too much right now.

Choices…intent….connections. And always, love. Those are the things that matter.

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If it’s a picture I don’t remember, I’m counting it as new. It was probably taken almost a year ago. I think she asked me to take this during a treatment because I told her that I missed her little nose.

Julianna’s Tea Party

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

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

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

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

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

 

And this:

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

 

The tone was set.

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

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The Sharpies were various shades of pink and purple. 

 

We asked people to write a note to Julianna:

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

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Heart notes to Julianna

 

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

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

 

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

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

 

But we made it clear: there are expectations.

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

 

There was food:

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

 

And a cupcake bar:

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And some of our favorite pictures:

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

 

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

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

 

Julianna’s class made these wonderful decorations:

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

 

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

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

 

We asked people to write down their favorite tea:

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

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

 

And her dresses…they had to be there too:

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

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

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

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

We got some ice cream.

 

And went to Harper’s Playground:

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

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