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. )

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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.

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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.

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Photobombed by the bride! Do you see awkward unicorn?

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

Overwhelmed

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.

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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.

 

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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.

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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.

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Notes:

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

    @julianna.yuri

#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

Lastly:

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.

 

To My Julianna

 

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This is the letter I read to Julianna at her Tea Party Celebration of Life. I am usually a nervous (i.e., avoid it like the plague) public speaker. This time, it was not an issue. (J would have said “Don’t freak out!” or “Relax, princess.”)

As I wrote this letter, I felt her presence and the peace of God.

17 June 2016

Dear Julianna,

My darling girl, how I miss you. I can’t believe you are gone.

I sit here in your princess room, in the familiar chair. It has all of your things, the stuff I once thought of as clutter and now consider treasure, because you loved it all. If there is a way to truly love inanimate objects, I believe that you did, because your love is just that strong.

I knew this day would come. I tried to deny it for the longest time, but I knew, early on, that my time with you on earth would be way too short.

Even before your CMT declared itself to be the beast that it was, even as we planned a long life with adapted everything, I worried. There was this gnawing fear that I tried to shove deep down.

You see, I believe that children whose time on earth is short are special. It’s not just a platitude, or something I say to make myself feel better. It actually made me feel awful. I recognized very early (after the nasty colic stuff went away, that is), that you were not an ordinary child. And it scared me.

What kind of a child never feels sorry for herself? Or refuses to pick favorites because you don’t want people (or things) to feel left out?

I described it this way in an e-mail I wrote in October 2014:

If you have been around Julianna, you know that she is one of those kids – her spirit is incredible and resilient, and she is wise beyond her years while being delightful and funny at the same time. She is exceptional.

I recognized this, and it scared me. If it had been up to me, I would have made you more ordinary, so that you could be with us longer. It’s selfish, and not very wise – but it’s the truth. That’s how hard it was to imagine a life without you.

So now, we are here. I was right to be afraid of this, because it hurts – more than I can describe, or even think about for any length of time. That’s the price I pray for loving you so much. But it’s OK, because the love you gave me was epic. I’m still coming out ahead – by an enormous margin.

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.

You said it best, darling girl. Love is a superpower.

Just look at what it’s done:

  • It made an introvert bare her soul to the world – via CNN.
  • It let a little girl who had a hard time just going out of her princess room be known — by the world.
  • It made the laconic very, very verbose – this would be Steve, in a 1,115 word-count FB post about Making a Moment.
  • It makes converts out of pinka-phobes – because it was your favorite color. (Steve again…)

 

And love is the only thing that is powerful enough to get us through life without you: God’s love, manifested so obviously in every fiber of your being. You took His greatest gift and shared it with all of us.

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.

My sweet Julianna. You have taught me so much, but this is your most important gift: that the thing I feared most has happened, but I will survive. Because of your love.

You will always be my baby.

With all my love, and a million zillion kisses – until I see your beautiful face again…

Heart,

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NOTE: Julianna’s Tea Party will be featured on Anderson Cooper tonight – 8P EST.

 

A Father’s Day Tea Party

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This is my favorite picture of Steve and the kids. It was fall 2013. Alex is in his school uniform, and Julianna looks like she’s participating in a roller derby.

It’s actually her school outfit, of course. Her helmet and ankle orthotics tell me that she was still able to use her walker.

Things are obviously different now — so different.

In the midst of this life-altering week, we realized that it is Father’s Day weekend. Lousy timing.

“We’ll deal with it later,” Steve said. He was right, for there was much to focus on this week.

Yesterday, we threw Julianna a tea party worthy of all the superlatives: magnificent, fabulous, stupendous. I know that it made her proud, and details will be forthcoming.

Today, it is Father’s Day.  We will deal with it in this space by sharing the words that Steve delivered at Julianna’s tea party: her celebration of life. ( emphasis is mine )

The last 18 months have been a gift from God. Miracle after miracle.

18 months ago, Julianna got another cold, after having just gotten out of the hospital. We were all bracing for the worst.

But she bounced back — and not in weeks, but in days. It was almost a non-event. Other colds and challenges would come, but she continued to thrive, even though her body was failing her. Julianna’s disease was like a prison for her body.

I can only attribute this to a fundamental decision to stop trying to fix Julianna ourselves, and put our faith in God. It became abundantly clear that there was nothing we could do to save her from her disease. And we were driving ourselves into the ground trying to do that.

That doesn’t mean we gave up on medical care. Certainly not!

What we got from that 18 months was healing and growing as a family. We got to enjoy and love on Julianna, and her spirit and imagination thrived because of that love. We got to share her love with the world.

She loved getting toys, but not for why you might think. It goes much deeper than that. That toy was a tool for her to get someone to play with her. It wasn’t necessarily the playtime either that she needed.

What she needed was the DAILY reaffirmation of our love for her through spending quality time with her.

– creating an interaction,

– creating a connection,

– creating a moment

that we will continue to cherish

and demonstrating to her we still love her.

She thrived in that love. Her light burned so much brighter, and the world has seen it.

A heartfelt thanks to those who’ve helped us through this. Your portion of light has warmed our hearts and helped more than you can imagine.

Those connections are important.

Whether you’re a prisoner of a disease, lost in the wilderness of life, or tossed about on the sea of disillusionment, there will be a Light to follow. It may be hard to find, but it is there.

A Light founded in love giving forth peace.

Create that connection. Make a moment.

Last week we were living in Psalms 142. But now the prison is broken open and Julianna can soar on Angels’ wings.

Thank you.

 

Psalm 142:7

Set me free from my prison,
that I may praise your name.
Then the righteous will gather about me
because of your goodness to me.

Raise a Cup

Tomorrow morning at 10AM PST (Saturday, June 18, 2016), we will celebrate Julianna’s life with the most epic tea party that heaven has ever seen.

Many who loved her cannot attend in person, but if you’d like, raise a cup of tea (real or imaginary) for our Julianna. She would definitely approve.

Love is a superpower.

PS. Thanks to the smart reader who suggested this 🙂

PS. And post it — we’d love to see it! Join the public Facebook group “Tea for Julianna” – made by my friends. 

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Tea for Many

Dear friends,

Thank you for your messages. Knowing that Julianna touched your life, reading your words and feeling our shared sorrow comforts us more than anything right now.

It doesn’t feel real yet. It feels bizarre, not doing the hundreds of little things that were required each day for the care and upkeep of our precious Julianna. Our house is full of people, but in some ways, it’s never been emptier or quieter. I miss her voice, the steady noise of the machines that helped her breathe. They were the heartbeat of our home.

We are busy now, planning a tea party for Julianna. It will be big, elegant, colorful, fun, whimsical, loving, bright, joyful, magnificent. The dress code: fabulous (but accepting. J had strong sartorial opinions, but she wanted everyone to feel comfortable.) We want to make her proud.

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Summer 2014

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Summer 2014

I have always known that the time right after someone passes is not the hardest part. We have so much to do, and reality has only sunk so far. The most painful grief will come later, in the months, years and decades to come. Please remember that. Reach out to those who are still grieving, and share a memory of their loved one.

We will find a way to share Julianna’s tea party in this space. For now, there is this, sent to me by twelve-year-old Aanyah Abdullah. We haven’t met, but she seems to me to be another old and wise soul. She has a heart for kids like Julianna.

Video Tribute to Julianna, from Aanyah

 

Julianna

Dear friends,

Our sweet Julianna went to heaven today. I am stunned and heartbroken, but also thankful. I feel like the luckiest mom in the world, for God somehow entrusted me with this glorious child, and we got almost six years together. I wanted more time, of course, and that’s where the sadness comes in. But she is free now. 

I will have more to say later. For now, this is what is in my heart.

Today, I just want the world to know that there was a girl named Julianna.

She was a bright light. An old and delightful soul.

She loved love, and “everyone except for bad guys.”

She was an unabashed princess and she elevated everyone around her. We were all kings, queens, princes and princesses by association.

She urged us to play, to really focus on just playing. She encouraged us to be our most colorful and fabulous self. (One of her last words to me: “What’s that?” to my gray sweater…)

Her mind was “always going.” It took us to a beautiful world without limits.

Her words were startling. Sometimes I thought that people wouldn’t believe the conversations I recorded. How could a five year old know those things? But if you spent any time with her, you knew.

She fought hard to be here, harder than I’ve seen anyone fight, with a body that was too frail for this world. She was so brave — and I hated that she had to be so brave. This last fight was not to be won by her body. It was tired, and it needed to rest. And when it did, she was comfortable.

Today, she is free. Our sweet Julianna is finally free.

Please do not forget her. She lived, she was real, and she mattered.

I cannot believe that she’s gone. Already, I worry that some of her has faded, and I need to remember all of her. The way her warm little hands felt, the hugs she would give by asking you to drape her arm around your neck. The kisses she blew. They never ran out.

Please remember our precious girl: she was Julianna.

 

Julianna Yuri Snow

25 August 2010 – 14 June 2016

 

Feature photo and photo on right by Audrie LeGault.

Comfort and Tea

Last night, CMT reared its cruel and hideous head again.

It came out of nowhere, body aches, fever, then aspiration. The night was fitful, and we struggled to keep her comfortable. We are still trying, but the antibiotics and pain medicines haven’t made the difference, not yet.

It wasn’t supposed to be this way. She had a good week, and it was a perfect, glorious 70 degree Sunday. We colored some hair (on her Barbie head) and did some projects (flower crafts). We took a stroll in our neighborhood, and she picked me this flower.

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She always does this – every single time she goes outside (and it’s not a lot), she insists on picking a flower for mommy. She tells me to put it in water and in my bedroom and “think of me.” As if I could think of anything else.

And today was supposed to be different. For weeks, she has been planning a tea party with her kindergarten class. It’s the last week of school, and Julianna hasn’t seen them in person since the fall. She had her hairstyle, dress and teacup picked out. It was supposed to be today.

Julianna reminded us of this last night. Even as she told me that it was hard to breathe, she talked about her hair and her dress, and how she had to go to the tea party and use her cup.

And we were determined to do it. To hell with safety and — whatever we’re trying to preserve. If she wants a tea party, she gets a tea party. We’d make it happen. Only we couldn’t. She took another turn in the morning – more fever, perhaps another aspiration – and even she agreed that she shouldn’t go to the tea party today.

And here we are, at home. She’s asleep, but not comfortable. We wait, we pray, we watch and we plead. Comfort, please, for our Julianna.

 

PS — Julianna was in rare form last night. Even though she was struggling, she was funny, decisive and spirited. She schooled me on the correct way to hold her cough assist mask and declared that I was still “in training” – but she forgave me. When she wanted ice, she said “Ice, Ice Bebe.” (Bebe is the name of her former favorite – and most scary – doll).

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J and Bebe – summer 2015

Pain and Wonder

 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?  Can any one of you by worrying add a single hour to your life[a]?

— Matthew 6:26-27

For a long time, I thought that this verse (highly cited as an answer for those who worry) made no sense.

Nothing manmade approaches the beauty of a sunset, and human ingenuity seems crude compared to just about anything God designed. I know all that. But here’s the part that terrifies me: nature is brutal.

The natural world is wild and unpredictable. Impossibly graceful gazelles romp in the savannah – but also get eaten by lions. Baby birds somehow learn to fly, but what happens to the ones that can’t? It’s the circle of life, survival of the fittest: this means there’s as much death as there is birth.

When your child has a serious illness, brutal, wild and unpredictable is not acceptable. You are looking for a cure, a guarantee. Above all else, you want safety. It goes against nature to outlive your child, but…sometimes it’s exactly what happens. In nature.

There’s so much I don’t know about God and this world, about sickness and healing. There is profound beauty in this world, but it’s so messed up.

I believe that God can do anything, but I know that He doesn’t always grant physical healing. I don’t know why, and I don’t expect to find out – not in this world.

This is what I do know: Julianna is a magnificent child, a bright light. God made her this way, and she is blessed. Like the beauty of the lilies in the field, this cannot be denied.

It’s hard for me to reconcile all of this, and I think that’s OK. The pain and the wonder are all mixed together, and I don’t think that it can be any other way, not now.

One day, I won’t have to worry anymore. Until then, I cling to the little miracles that surround us,  the sunsets and laughter and kindness. They are reminders that the best is yet to come.

If we find ourselves with a desire that nothing in this world can satisfy, the most probable explanation is that we were made for another world. — C.S. Lewis

 

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Sunrise

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Sunset

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And a promise. 

This week,

We had a conversation that illustrates perfectly the wonder, joy, heartbreak and laughter that Julianna brings us — every single day.

J: Why was I born with CMT?

M: Oh Julianna…I don’t know.

Silence. I often tell her I wish that we could switch places, but I stayed quiet this time. 

J: I don’t want to switch places. I want you to walk.

M: Oh, Julianna. But if we could, I would do it in an instant. I’d rather you walk.

J: You’re important too.

M: But you’re my daughter. If I could somehow let you walk, it’d make me so happy. But I can’t, so maybe it’s silly to even talk about it.

J: But what about your patients?

M: What about them?

J: You wouldn’t be able to see them.

M: Maybe not. But it would be OK.

J: Then your boss would fire you. And I don’t want to lose my princess room!

Later…

J: What does “fire” mean?

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Photo by Charles Gullung.