Last night, Julianna and Homie came up with another story.

Once upon a time, there was a girl named Mindy. (This was Homie’s contribution).

Julianna came up with the rest. Mindy and her brother Mack have a cat (Sweetie) and a mouse (Missy, as in Missy Mouse). Their parents have to work very hard and are out of the house most of the time. Mindy and Mack have to fend for themselves.

Fortunately, Mindy has magic hands. She can do anything with her hands, and quickly too. She plants a garden with reddish-pink flowers. She makes dinner (pizza and tomato soup, with cupcakes and chocolate pudding for dessert). She does laundry. She gives baths. The magic hands never get tired.

Julianna insisted on telling me the story of the Magic Hands last night. By then it was 10:30PM, way past her bedtime. Her eyes were wide open, and she moved her arms around vigorously to show me all the things the magic hands could do.

Right now, Julianna can only move her head and her arms (from the elbows down). This was more movement than I’ve seen in a while. I told her I loved the story, but that it was late. I left the room and she was asleep within minutes.

These are the magic hands.

Note that she has different motions for the various tasks

M: What are those hands doing, Julianna?

J: Growing flowers.

M: What else do your hands do?

J:  They – make dinner.

M: Good.  What else do the magic hands do?

J: Wash clothes like this.

M: Great. What else do the hands do?

J: They take baths like this

Julianna has been a storyteller for quite a while. Her imagination takes us to a world that is bright, fun, startling and lovely (I could use all those words to describe J). In her world, there are no limitations. Trips to the park take just a few seconds (and also include stops for ice cream and lemonade). And Julianna doesn’t need any help in this world: her body is as strong as her spirit.

For the last few months, our friend Christine (featured in the KBS special, “Julianna’s Christmas) has been bringing Julianna’s stories to life. It’s  a labor of love, and from the beginning, the goal has been to create a book for Julianna and friends.

The book is nearing completion, but before deciding on a (self) publishing venue, we’d like to get an idea of how many copies we should print (lots of demand=bulk publishing & lower prices). Please see Christine’s website for more information. (A portion of the proceeds will benefit CMTA)

We love Christmas. (With a last name like Snow, it’s somewhat inevitable). This is what I want to remember from 2015.

The Ugly Christmas Sweater Competition

Impulse buy on the Eve of Christmas Eve: Ugly Christmas Sweater kits.

How I justified this purchase: It’ll make a fun family project, and who doesn’t need at least one ugly Christmas sweater? We’ll make it this year and wear it every Christmas Eve. A new tradition!

The logistics: Alex and I made the green sweater .J and Steve made my red sweater.

The result:

 

The reality:

• These sweaters will not stand the test of time: everything is glued on
• J thinks my sweater is beautiful

 

No one got much sleep on Christmas Eve.

 

Alex and Steve camped out by the Christmas tree.

J camped out in her room.

Camping has been running theme in J’s play stories. She was delighted to get a “real” camping set.

J’s gift to me:

J’s grandparents helped the kids buy Christmas presents this year. Their presents tend to run on the practical side. For example, with their help, J gave Steve a glue gun, and Alex gave me a flashlight (it was pink).

According to Grandma, J was very specific about what she wanted to give me. This doll is her gift to me.

 

I have told J a few times that I had only one Barbie doll when I was growing up. (This comment usually comes out when I’m trying to organize her small nation of dolls). This was obviously not acceptable to J.

Along with the doll, I got plenty of tips — Mommy, you should brush her hair. And make her feel welcome. And keep her in your room forever. You have to take care of her. As usual,  J’s instincts are correct: I don’t really know what I’m doing with Barbie-like dolls.

Even more amusing was J’s original idea: a bird. She knows I can’t stand birds, and thought that some immersion therapy would cure me of my phobia. (I wrote more about my problem with birds here.)

A Show of Support

All of the teachers from Alex’s school wore Julianna’s pink CMTA bracelet and took a picture.

LIFE:

Alex received the Game of Life for Christmas this year. (I loved this when I was a kid — I think that there’s something satisfying about spinning that colorful wheel.) I explained to A&J that this game was about life events: working, getting married, having babies.

• J: Babies? I want babies! (Before the B word, J was not interested.)

And so we played. Here are the highlights:

• J was the only one who decided to go to college. Her career choice was fashion designer vs. secret agent. You can guess which one she picked.
• J was happy to get married. She asks to see her husband (little blue peg) and nods her approval.
• J was delighted when she finally gets her car full of babies: They’re so cute. I love them! Wait, do they come with a stroller?

After the game, Alex wants to play again. J refuses, saying she just wants to play with her babies.

And a documentary

And lastly, I’ll add share this: “Julianna’s Christmas” aired on South Korean TV (KBS1) on Christmas Day 2015.

When our CNN story came out, we got an overwhelming amount of attention and media requests. We declined almost everything.

KBS (Korean Broadcasting System) was one of the media organizations that contacted us. They had translated and read my entire blog, and they wanted to do documentary about our family. The theme was to be “love”, and it would air on Christmas day. To do this, they would need to come into our home and film us for ten days.

It seemed like a crazy idea, but the opportunity to share our family’s story with my native country was compelling. You can see it here:

Julianna’s Christmas

(We haven’t seen it yet, but Homie and my relatives in South Korea think that it’s very well done.)

A few days ago, we learned that the actress who narrated this special, Lee Bo-Young, would be donating her salary for her work on this project. We have asked that these funds go towards the CMT research in the US and in South Korea. We are moved and humbled by her generosity.

To Ms. Kim (the one who convinced us to do this), Mr. Kang (producer), Mr. Lee (cameraman), Mr. Han (translator) and all the people at KBS who worked on this special – thank you for your beautiful and respectful portrayal of Julianna. And Ms. Lee – your kind gesture ensures that this documentary truly is about love. Thank you so much.

Short and sweet peri-Christmas happenings. 

J is still not tired.

Homie is trying to put Julianna to bed.

H: Julianna, I can see that your eyes are tired.

Julianna does this:

H: Julianna, what are you doing?

J: These are my eyes. They’re not tired!

 

Playing – always

Julianna has been talking about going to  Homie’s house (in St. Louis) more these days. We used to visit over Christmas. These are pictures from our last trip there in December 2013. (J was 3 and Alex was 5.)

 

A Nice Moment

For over one year, J has only been able to sit up with the help of her Tumbleform (the purple chair that is in so many of her current pictures). I cannot remember the last time she was able to sit in my lap.

Last week, Steve called me into J’s room just to see this:

 

I’m not sure how this happened, and it didn’t last very long – but it was so great to see her in her daddy’s arms.

“I Triple Madly Love You”

said J to Homie.

Brother Sweet Baboo

Alex has been more affectionate lately. I think that J’s cold scared him as well. (But they still fight. It hasn’t gone all saccharine around here.) Last weekend, he gave her an unsolicited hug. Julianna was in heaven.

J: Sweet Baboo… (note: we’ve been watching a lot of Peanuts lately)

Alex wrinkles his nose

M: Julianna, he’s your brother.

J: But I want to say both. Brother Sweet Baboo!

A: (under his breath )That’s even worse…

And tonight, there was this:

J asked Homie to read Calvin and Hobbes before bed. Homie has a hard time reading this book because the letters are small, so Alex jumped in. He stayed next to her in bed and read for over 30 minutes. Tonight, missed bedtimes were perfectly acceptable. The look on J’s face is another thing I want to remember forever.

Julianna has gotten over her cold, but there are some changes. Unfortunately, she still needs more respiratory support (higher BiPAP settings, nighttime oxygen).

She also needs a little more emotional support. These days, she doesn’t like to be without Steve or me, especially at night. I have always thought of her as the strongest spirit in the weakest of bodies, so it was a bit of a surprise. But is it really that surprising? Julianna is intelligent and intuitive, and the cold scared all of us. J knows what her body has done and how it feels now. How can she not feel its fragility? I wish that she did not have reason to worry, but I am glad that she is leaning on us for support.

In a way, Steve and I have been doing the same thing. By sharing our story (first with our family, and now with, well, anyone), we reveal our most painful vulnerability. We didn’t start sharing to gain support, but we have received it. It’s been an unexpected and beautiful development.

Neither Steve nor I are particularly good at receiving things, whether they are compliments, gifts or people’s time. We never want people to go to any trouble and we like to think that we’re self-sufficient.

Independence is a good thing, but let’s get real: parents aren’t meant to outlive their kids, and we can’t go through this journey alone.  We need to talk about the things that are hard to admit (like how scary the winter still is for us, especially the month of January) and we need to lean on others. This doesn’t make us weak:  it makes us human. Just like Julianna.

Christmas is about a gift that was freely given. We can’t earn this gift, but we do have to receive it. And to receive it, we have to admit that we can’t make it on our own.

It feels like it has been one long Christmas. All year, we have received gifts, freely given, from so many. This week, we received these gifts.

Music

A singer and a pianist filled our house with the gift of music. This clip is the third verse of Amazing Grace.  All eyes were on Julianna as she sang and moved to the music. When we’ve been there 10,000 years, she will still be singing and dancing, and she will still be bright.

DRAMA (the good kind)

J often asks to go to Disneyland so that she can see “real” princesses. I wish we could do this for her, but it’s hard to even leave the house. Today, she had a visit from Ariel, Snow White and Glenda the Good Witch. Sir Lancelot tagged along too. They had tea, joined the clubhouse and talked about royal things. It doesn’t get a whole lot better for Princess J.

 

 

 

 

It’s been one week since Julianna woke up with the frog that turned into a cold that sent us into a tailspin but ended up being a miracle. This week, we were scared, so sad, then determined, incredulous, thankful, joyful – and busy.

It was a lot. It has been a lot.

It has also been unexpectedly easy. Julianna is almost over her cold, and it hasn’t been the scary, round-the-clock ordeal that we imagined. We have all, in fact, actually gotten more sleep than usual.

When you have a medically fragile house, “easy” is not your usual modus operandi. Your lives and routines are complicated. You are always vigilant lest the other shoe drops. It’s no wonder we don’t sleep very much or well.

But if we follow Julianna’s lead, things don’t really have to be  that difficult.  Life is not always easy for her (she admitted this week she was scared of this cold), but she spends her energy on things that are fun and happy and beautiful. She makes life look easy.

So in the spirit of easiness, I am not going to toil too long over this blog post.  This is a bunch of random, mixed-up moments that I want to remember forever.

An ultimatum, Julianna style.

Julianna often wakes up too early. We try to coax her into staying in bed until at least 7AM. We turn on soothing lullabies, smooth her blankets and kiss her forehead.  Most of the time it works, but one morning last month, it didn’t.  She was still half asleep when she said this, but her intent was clear.

J: (to Steve) If you don’t get me up, I’ll put a sparkly bow on you.

A good historian:

In medicine, a good historian is someone who can succinctly deliver pertinent information. Julianna is one of the best.

A few weeks ago,  J demonstrated her mastery of the pain scale, and showed her stoicism too:

J: My left arm hurts. It’s a 5.

M: Julianna, what does a “5” mean?

J: You don’t cry at a “5.” It means medium. Less than a lot.

M: When do you cry?

J: A “10.”

We gave her Tylenol that night, and the next morning, J declared her pain level to be “zero.”

The Quality Time Enforcer

J stopped napping a long time ago, but we still make her go down for a few hours each afternoon to have a long “body break.” (She has scoliosis, and it’s hard for her to sit up for prolonged periods). We usually put on something for her to watch. J insists that we watch with her.

One day, her nurse, E, used this time to do some (gasp!) charting.

J: E, if you don’t watch the movie, you’re going to be fired.

Just last night…

We’ve just done her bath, and I am dressing J. It’s not going fast enough.

J: Get my naked off!!

M: What?

J: I mean, get my clothes on..

And because it’s almost Christmas

J’s favorite song is “Hark the Herald” She sings it year round. This was recorded in July.

J’s voice is less squeaky now, and she is her funny, spirited and bossy self. Other than a few changes (needing oxygen at night, increased BiPAP settings, difficulty breathing in certain positions), everything looks like it’s back to normal.

It’s not quite that way.

Everything is going well, but we’re all still on heightened alert.

Steve’s parents live five minutes away from us, but they are sleeping on our living room floor. We have all had too much experience trying to bring Julianna out of respiratory distress. It requires speed and coordinated effort, and it’s best not done alone.

These days, it just feels better to be with others. Homie is back now too. She spent Thanksgiving with us and went home less than a week ago. When J got sick over the weekend, I told her to think about coming back. I just couldn’t predict what would happen. She has been with us through every hospitalization, so she knew what I meant.

J’s recovery has exceeded every expectation, and part of me feels silly for making my mom come out again so soon. On the other hand, any time with loved ones is time well spent. I want her to be with J and hear the dollhouse stories first hand. I want her to see the light in Julianna’s eyes and laugh out loud at her outrageous declarations. I want for her to be a part of the group hugs that J requests so often. These are the moments we treasure: they are everything.

Yesterday’s moments:

J did her “happy dance” as soon she woke up.

 

J watched “Brave,” one of her favorite movies. (She calls Merida the “wild princess.)

J: Mom, look!

I look up. It’s one of the naked butt scenes.

M: (mock modesty). Julianna, that’s sooo embarrassing!

J: I’m not embarrassed.

 

J decided that all of her ponies have special powers. The white one can make snow. The blue one makes water.

 

And this purple one?

 

 

This is Tylenol pony. She makes people feel better.

Do you believe in miracles? I do.

Miracle #1: How does a five-year-old go an entire year without having a single cold?

The average child gets six to eight colds per year. Until yesterday, Julianna didn’t have even the slightest hint of a runny nose.

Miracle #2: The thing I had been dreading came to pass yesterday, and we are still standing.

Our usual pattern is that J goes from runny nose to needing ICU level support in less than 48 hours. Yesterday we started antibiotics, went up on her BiPAP settings and began supplemental oxygen. We had to do a lot of cough assist to go after junk from her lungs – but it all cleared, and she didn’t spend a lot of time in discomfort.

J usually can spend no more than two hours at a time sitting up in her chair. Yesterday, she couldn’t lay down for more than thirty seconds before getting short of breath. We had no idea how she was going to sleep, and we braced ourselves for a rough night. J’s grandparents came so that we could work in shifts. Around 8PM, J could suddenly lay down. I have no idea what changed, but she slept pretty comfortably through the night.

Miracle #3: J lost her voice, but it was OK.

J could barely talk when she woke up this morning. This has never happened before, and I know she didn’t like it. I told her it was OK. She could still speak to us through her eyes and her movements. Her friends and caregivers could still play with her because they have had a lot of practice acting out her stories. And I know her heart. She has shared her heart with me, and it is beautiful. We don’t need words.

Around 11AM, her voice came back – a tiny, high pitched thing, but a voice nonetheless. J calls it her “Squeaky” voice. “I love my squeaky voice!, she said.

Her voice has gone in and out through the day. I told her that she may not have her voice again in the morning – but I think it’ll come back.

What makes this a miracle? Julianna’s vocal cords are partially paralyzed. It’s another stupid complication of her stupid disease. People get laryngitis all the time – they lose their voice and it’s not a big deal. We have known for a long time that any inflammation of J’s vocal cords could be dire. Today, it wasn’t.

We are in uncharted waters. We’re home instead of the hospital, and it hasn’t been as awful as I feared. These are the moments we made:

Steve picked up this massive dollhouse at a garage sale for $25. It was supposed to be a birthday present, but we never found the time to clean off the dust. Yesterday afternoon, we made the time and gave it to her. She has been having a blast. Her fairies, ponies, dragons and princesses finally have a place that they can all call home. (It does only have one bathroom, though. I asked J how they could all share one bathroom. J gave me a look and said “Play!” She doesn’t have time for ridiculous questions.)

 

J got a “bed bath” today, and we made it into a spa experience with lavender soap (like Fancy Nancy, she thinks everything from France is divine) and a silk fan towel. Later, she asked to go under the silk and called it a “clubhouse.” Rules of her clubhouse? 1) Be pink always! 2) Bring a diamond every day (We asked, and CZ is also acceptable. J is no snob.) and 3) Never leave.

 

(And this is actually miracle #4)

Christmas is coming early, and it is joyful — despite our circumstances.

We are guilty of not knowing most of our neighbors. They are reaching out, though, and covering us with love.

 

 

A few nights ago, a group from our neighbor’s church blessed us with Christmas carols. They sang “Hark the Herald” (J’s favorite), Silent Night (with even a verse in Korean) and more. It made me cry – and J dance. They gave us a parol, a lantern from the Philippines that represents the Star of Bethlehem.

 

This morning, a basket full of Christmas presents was left at our door. It was from more neighbors who gave gifts that represented the Christmas traditions from their native lands.

 

In my former life, I loved to travel. I wish I could show Julianna the world, but right now, it’s a challenge even leaving her room. Today, she saw a little bit of France, Texas, India and Indiana.

What I wrote yesterday is still true: we don’t know where this is going. Julianna has the strongest heart, spirit and mind of anyone I’ve known, but also the frailest body.

I do know this: we are here through God’s grace. He has surrounded us with it.

For the last two days, Julianna has had a little “frog” in her throat. The only way you knew about it is if you were right next to her in a quiet room. It’s the tiniest of noises when she clears her throat, but it was enough to put us on alert.

This morning, Julianna asked for cough assist as soon as she woke up. She has never done that before. The frog sounded larger, and we had to do extra treatments this morning.

To make a long story short, things got worse throughout the day. We have been through this before with her, and we know the things that happen next. She’s working harder to breathe, and she needs extra oxygen to maintain normal oxygen saturation. A few times, I have felt that awful rattle in her chest – it tells me that she has junk that she cannot clear. So far, we’ve been able to get it with extra cough assist.

The new thing this time is that she cannot tolerate laying on her back. It’s hard for her to breathe. Part of it is that junk goes down her throat when she’s laying down. The other part is that her stupid disease has paralyzed her right diaphragm. We found that out last year. Who knows whether or not the left one is working? Have I mentioned how much I HATE neuromuscular disease?

The good news is that she is still happy and comfortable most of the time. She actually wants to play, and that’s what we’re letting her do.

This morning, we told Alex that Julianna was probably getting sick. Would he give her a hug? He went into her room and gave her a five minute hug. He has never done that before – not even close. I don’t ever want to forget Julianna’s face while he was giving her that hug. They decorated a gingerbread house together and actually cooperated. Alex told her that she could continue the decorating while he went to Tae Kwon Do. Julianna went on for a while but then said we needed to wait for Alex to finish the house. 

Our kids are like everyone else’s at this age – they fight and each want their own way. This morning was different.

I don’t know what the next few days will bring. I am, in turns, heartbroken and in denial. She was doing so well.

Right now, at this moment, she is happy, comfortable and doing what she wants. My prayer is that this continues until the very end.