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.





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”

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:

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.)


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.


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.

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:


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.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.


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.


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!

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.


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:


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. )


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:


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:


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:



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.


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.


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.



A Perfect Sunday

Two weeks ago, I woke up and looked at my phone: Orlando.

Such darkness in this world.

I’m a news junkie, and I usually read these stories — if only to honor the innocents. I couldn’t do it that morning, though. It was too much. I made a conscious decision to turn everything off and just be with Julianna.

On Sundays, I usually stayed home with J while Steve and Alex went to church. This was just another Sunday, but it seemed extra good.

I had extra energy that day, and we did everything she loved. We used chalk dye and colored her Barbie’s hair (rainbow colored, of course. J couldn’t let any of the chalk dyes feel left out). We made a funny looking flower out of fabric and a pencil (I’m not artistic, but add glitter, and J was happy). We played…how I wish I could remember what stories we made up that day.

We read Calvin and Hobbes and Fancy Nancy – the one about the wedding of the century. We watched…one of her shows. I wish I could remember which one it was. I hate that I don’t remember every detail, but maybe it’s because the day was so full.

We went on a walk. She picked me a flower. I decided to change out the wreath on the front door to something more summery. (Wreaths were kind of a thing with J. When we changed one out, she insisted on studying it, even if it meant keeping the front door open on a blustery day. This was a new wreath, and I would have been sad if she never got to see it. )


She wanted to watch me cook in the kitchen. I hardly ever cook these days! But that day I did, and she watched as the blender pulverized cauliflower into “rice.” We agreed, it was pretty cool.


Cauliflower fried rice.

One of her nurses (the one who had been with her the longest) came over for a few hours. She doesn’t usually work on Sundays, but this was an exception. J got one last good playtime, treatment and bath from a beloved nurse.

It was a perfect Sunday, and then it went horribly wrong. It became the worst Sunday of my life – and the last of hers. Just over twenty-four hours later, we lost her.

I started that day by deciding to shut off the news, and I haven’t been able to go back. I think it’s important to be informed, to be a “citizen of the world” and try to do good, but I’m discouraged. There is so much darkness out there, and my instinct remains to preserve all that is good and kind and loving: all the things that came naturally when focused just on Julianna.

To be honest, I’m angry. I hesitate to share this, because J was never one to get on a soapbox (except about messy hair). But I am angry about the ridiculous amounts of money spent on (fill in X, Y and Z – pick your poison) and the attention given to (pick again. There are lots of examples.)

Every day, children die. Some don’t have enough food. Some have diseases that don’t even have a name, let alone a treatment. Some are physically alive but emotionally neglected – what will become of them?

There are children and families who are fighting with desperation and courage. They make impossible decisions and hope for another good day with the ones they love. The strength to carry on during these kinds of days is supernatural.

And there are angels among us: peacemakers, nurturers, facilitaters. They sense a need and they help, generously and with love.

These are the stories I want to read about. Why can’t these stories be the ones to change the world?


Spend some time learning these stories (I am posting both with permission).

Meet David Spisak, a true hero.

David found love at age eight, and what a gift! He died a few months later from cancer.


(His mom and I connected because we both knew what it’s like to share our kids with the world and receive criticism from others who don’t approve of our impossible choices. This should never happen, but now I have a friend for life – because of our beautiful children. )


The journalist who brought David’s story won an Emmy. Strong work! Read it here.


Also, meet Jacqueline Dyer.

Like Julianna, she has a severe form of CMT. She loves pink, and she has a brightness in her eyes and face. Her parents also call her “J.”

This other J also likes mermaids. Last week, we did something that brought me such joy:

This tail was lovingly made for my J by a kind stranger. It let my J’s imagination soar (see this). Now it is with another girl, and the chain of love continues.



Please…fill your mind with these stories. Spend your time, your talents helping someone who is struggling. Use your money to fight CMT, to fight cancer, to lend a hand. Listen and learn from children. They are our best teachers.


Another Perfect Sunday

Two weeks after our last perfect Sunday with Julianna, we travelled to the Oregon coast. The ocean heals, and so does love. We connected with family, and we celebrated a wedding.


Photobombed by the bride! Do you see awkward unicorn?

There are some things in this world that are perfect: hold them tight.


It’s the only way I can describe it. The ten days since Julianna passed have been intense, and it feels like a lifetime.

It’s true what they say about the waves of grief, but it’s from an erratic ocean, one without pattern or rhythm. Sometimes the waves are massive and incapacitating. At others, they are just a trickle – a poignant memory, then an ache.


We took J and A to the Oregon coast in spring 2014 – before her 2nd hospitalization that year. It’s the only time she got to see the ocean. She was still strong enough to be in a hiking backpack.

The ache is the hardest part. The intense pain is searing, but it goes away. It’s like throwing up – horrible, but there is relief afterwards. The ache stays and it gnaws and it drains. I can’t believe that she’s gone.

There has been comfort too. I want to share the things that comfort us, because I know that others are hurting with us.

Take comfort in this: It hurts so much because the love is so great.

It’s the price we pay for succumbing to love, and I’ll gladly pay it – a million times, over and over again. The only thing worse than the pain now is imagining a world in which Julianna had never even existed. Or wondering if I held back, left something on the table to protect my heart. I didn’t, I’m grateful,  so I’ll take the pain.

Take comfort in: the words of a child.

A few days after Julianna died, Alex said this: “You know the morning after Julianna died and Daddy was on the phone? The people on the phone were crying, and it made me feel good.”

Alex, age seven, has realized that sharing in someone’s grief is a gift. Crying tends to make people uncomfortable – but why? If you have loved and lost, there will be crying and tears. It’s not a big deal.

It is an act of love to share in someone’s grief. For us, anyway, it helps to know that Julianna was loved, and that others are sad with us. It tells us that she mattered, and that she is not forgotten.

Take comfort in….the Therapy Unicorn.

I promise to do an entry dedicated to the Tea Party. For now, let me introduce you to this guy. He’s one of the first things that people saw as they walked in.




We recognized that there would be sadness at the Tea Party – and because it was Julianna’s Tea Party, a Therapy Unicorn made perfect sense.

This unicorn was a gift to Julianna from a dear family friend. He came from a truck stop. (I’m serious). Julianna met him during her last semi-good hours. He was introduced to her as a talking, face-touching unicorn.

True to form, Julianna called it:

J: That unicorn is awkward.


This is the last picture we took of Julianna. The unicorn was a perfect TumbleForms pillow.


A massive pink and purple unicorn who hails from a truck stop? Yes, a little awkward. He has, however, become a comforting presence. He has mass and weight. He reminds us of her and makes us laugh at the ridiculousness of it all.




  • My thoughts come more randomly and quickly these days, so I’ll probably be using Instagram more. You can follow us at


#teaforjulianna, #loveisasuperpower, #juliannasnow

See the public Facebook event page: Tea for Julianna for posts from around the world.



Lots of new articles are out — see:  “Other Stories” tab


If you have been touched by Julianna in some way, please help us fight the hideous disease that took her from us. This is one of our main motivations for keeping Julianna’s story alive.

Donate here to CMTA — for Julianna

(Do you see the purple cup on the unicorn psychiatry booth? We meant it as a prop, but the Therapy Unicorn collected $4.37 from satisfied patients during the Tea Party. I told Alex he could have the money. He said: “I want to give it all to CMTA for Julianna. It’s my money, and that’s what I want to do.”)

Buy her book, “Julianna’s Adventures” — 100% of proceeds go to CMTA.

Support independent publishing: Buy this book on Lulu.