Love is a Superpower

Julianna has a new nemesis.

 

About a week ago, J started talking about “Cash Girl.” Details are scarce. All I know is that she is a cashier in an ice cream store, and she has issues. I was introduced to her on one of J’s one-sided phone conversations. (Italics are my commentary).

J is pretending she’s on the phone. The first thing we learn is that Cash Girl is a taker.

J: Let’s get over with this. Huh? You want to take away my TV? You want to me to move out of my house? You don’t want me to have my princess room. Cash Girl, this is bad. I cannot do this. You want to take away ALL of my toys? Not all of my toys! You can’t do that! C’mon. You’re an angry girl and you’re grown up – so ACT NICER.

Cash Girl is a narcissist.

You think you’re gonna get presents b/c you think you’re good. Oh Cash Girl, you know Santa’s not going to give you presents. He’s going to give you coal. What? I’m not getting any presents? Of course I will….

She’s destructive.

CASH GIRL! You want to break my ceiling? You want to break my chandelier? Huh? You want to break the whole house? I will have nothing to live in. Huh? You’re gonna take away my house? There’s CEMENT. (J knows that houses have a cement foundation – she asked me one day why houses don’t blow away.)

She is an inhibitor of fashion and promotes infectious disease.

CASH GIRL. Stop that. You want to take away all of my clothes? Oh Cash Girl, that would take DAYS. Huh? If I told you once, I told you a thousand times. You want me to catch chicken pox and polio and leprosy? Oh Cash Girl…stop this.

And now she’s sounding scary.You want to flood the house? But that will ruin the floors. You want to do that anyway? You want to break everything? In our house? Even our cars? You want to know where I live? Well, I won’t tell you. You want me to tell you this instant or you’ll kill me?

M: (not liking the direction this is going) Why not just hang up, Julianna?

J: Mom,…she sighs... She keeps calling me.

M: Why don’t you block her number?

J: The only way to do that is to take it to the Dragon Force and have one of them breathe fire on my phone. You have to destroy the phone. (J has an answer for everything. Dragon Force?)

 

CG has, unfortunately, stuck around. Instead of the one-way phone conversations, J calls on me to fill the role: “Mom, be Cash Girl.”

Cash Girl, in my opinion, is an uninteresting mean girl. It’s not my favorite role, but she has led us to some funny moments.

I’m doing J’s treatment.

J: Mom, tell CG that you’re a queen.

M: Cash Girl, I’m a queen.

J: She doesn’t believe you.

M: Why should she believe me? I don’t dress like a queen. And I’m a doctor.

J: Some queens have special duties. Wear a tiara.

I oblige, then I brush her teeth.

J: There. Now you look like a queen. That tiara makes your eyes sparkle.

Cash Girl, see, she’s a queen.

M: Oh shoot, Julianna. I forgot to do your inhaler. We’ll have to brush your teeth again.

I look for her inhaler and can’t find it. I get a new one from the supply closet.

J: What does Cash Girl say?

M: See? Your mom isn’t a queen. What kind of a queen forgets to do your inhaler, and then can’t even find it?

J: in a serious tone Cash Girl…, my mom is old. She forgets things.

 

CG is the anti-J, which means that they have opposite fashion philosophies. CG thinks that J should only wear brown, black and gray. No sparkle, everything plain.

J: This is not funny. I take this personally.

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In her colorful Supergirl shirt.

She’s also brought up a profound truth: love is a superpower.

We’re talking about superheroes.

M: What’s your superpower, Julianna?

J: I love. What does Cash Girl say about that?

M: She says “That’s not a superpower! What a fake.”

J: It IS a superpower. It makes bad people become good.

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“Rockstar, BAM!”

“We think it’s finally time. We need to get a wheelchair.”

And with those words, the tears came, swift and strong. They took me by surprise, and they were the kind that could escalate very easily into outright sobs. I took a moment, annoyed that I was crying.

We had known for a while. Julianna was three, and the walker was getting harder for her. We couldn’t keep her in the $20 umbrella stroller forever. I knew I should’ve been grateful that we had good insurance, that we lived in a country that protects (imperfectly, yes) the rights of the disabled. A wheelchair would give J the best chance for a “normal”, independent life. Why did it hurt so much to state the obvious?

J’s physical therapist guided us skillfully and compassionately through that conversation. It was normal to be sad about needing a wheelchair, but it would open up new worlds for Julianna. It was time.

And for several months, it was glorious. J was a natural. She drove her “rock star pink” wheelchair with confidence and pride. She liked to go fast. The chair brought freedom: for the first time, she could go from room to room all by herself.

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Halloween 2014 — could it get any better? 

 

Julianna got the chair in spring 2014. By that fall, it got more difficult for her to use the controls and to even sit up. Her Make-A-Wish princess room reveal in Jan 2015 is one of the last times she used the chair.

For over a year, the pink wheelchair sat in our formal dining room. It was a big, heavy and expensive reminder of another loss. By late 2015, we knew we should move it on, but it took another six months to do it. We hear it has a good home now, and hope that it brings freedom and pride to another child.

About a month ago, I told Steve that I thought we should get another wheelchair. It would have to be a “medical stroller” type chair that would let J sit up (with lots of support) but also lie flat. It would need to hold her BiPAP and suction machine. We knew that it’d be several thousands of dollars, but if we found something that worked, it could expand Julianna’s world.

I asked J what she thought of the idea, and she was enthusiastic.

 

J: That’s a great idea, mom.

M: They’re expensive, but it’d be worth it.

J: How much?

M: Don’t know yet.

J: I have lots of money in my piggybank.

M: Julianna, you have a few dollars in your piggybank.

J: That’s a lot. I’ll pay for half.

Within a few weeks, we had a chair. Julianna’s piggybank funds, I’m happy to report, are untouched: the chair was donated to us.

The chair has already made a difference. J can move more easily throughout the house, and movement out of the house is no longer out of the question.

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The stroller wheelchair lets her sit, tilt and lay flat. There’s room for BiPAP, suction and the feeding pump.

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Laying flat in the stroller. This is the first time J has been able to touch the piano keys in years. 

Part of me has a hard time remembering the person who cried about a wheelchair. So much has happened since then, and now I would give my right arm if it would somehow mean that J could use a power wheelchair again.

On the other hand, the pain is familiar. Parenting a child with a terminal illness means that your heart is fractured a thousand different ways. One day it will be broken, but until then, you fight to give your child the happiest, most comfortable, most beautiful life you can. And for us, this is what a wheelchair means this time. No sadness, just gratitude.

 

This week….

Julianna seems to have new energy these days. It may be the microphone, it may be the wheelchair. It is answer to prayer, and we will take every little bit of it.

 

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Spirit week for J’s school. She insisted on wearing three bows: “everything is not enough.”

 

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It was unusually warm in the Pacific NW. Here, Julianna is playing with sand from the Oregon coast. 

 

And…I have no idea where this came from. Someone complimented J on her sunglasses.

“Rockstar, BAM!”

 

“I’m Going to Win because I’m a Princess.”

Imagination is a powerful (and funny) thing.

Julianna has a ridiculous amount of toys. Sometimes, though, she needs nothing other than imagination and attitude.

And a few weeks ago, Julianna dictated a series of letters between her and Calvin (from Calvin and Hobbes.) She imagined that they were forced into being pen pals with each other. Oh, the drama.

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Dear Julianna,

I don’t like you right now. I’m going to find a way out of this, and then, watch out!

Signed, Calvin

 

Dear Calvin,

You are a dummy and you need to listen better. And you should not bother us.

Signed, Julianna

 

Dear Julianna,

You’d better watch out and be nice to me, or I will make a trap and trap you.

Signed, Calvin

 

Calvin,

I’m trying to do this for your own good. You need to listen to me! I don’t care what you say.

Signed, Julianna

 

Julianna,

Just wait. I’m going to capture you!

Signed, Calvin

 

Calvin,

I’m going to battle with you, and I will win.

Signed, Julianna

 

Julianna,

I will win because I’m a boy.

Calvin

 

Calvin,

I will win because I’m a princess. AND Hobbes is on my side! And my parents. So watch out, mister!

Signed, Julianna

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“I’m going to win because I’m a princess.”

Julianna,

Watch out, because I have secret weapons.

Calvin

 

Calvin,

I have pixie dust.

Julianna

 

Julianna,

I don’t believe that you have pixie dust, so I’m going to win.

Calvin

 

Calvin,

I’m going to ask my fairies to help, and they have berries to throw at you – so watch out!

Julianna

 

 

And the other night, J told us that she needed to “take some phone calls.” The phone was her iPad holder.

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Note:

  • the “club” is a girl’s club, but boys can join as long as they follow J’s rules.
  • Italics are my comments and clarification
  • To get the full experience, read aloud and feel disbelief with the “what’s?” and outrage with the “WHAT’s”?

She starts off talking to her nurse, “N”, who called in sick that day.

 

Julianna: N? Are you sick? You can come over here with a mask and gloves…What? You want to talk to me forever? I can’t do that! Why don’t you come here for a slumber party and join the club. WHAT? You want to stay home and watch TV? Oh…you really want to come but at the same time, you want to watch TV at home. If only there’s a potion (to make this possible). You could just come here for a visit with the club. Uh, wait a minute. You don’t have the right tools for the potion? I thought you had everything. You said that. So you lied to me. WHAT? The wizard of Oz does? (has the ability to make the potion) I thought you said you did. You lied to me….

Uh, I have another call at the moment.

(not sure who she is talking to next, but it’s someone who evidently appreciates all that the club offers. I love her vision of a sleepover…)

Hello? You don’t want to watch TV and stay home? You want to have a sleepover with the club? You want to read stories? You want to have pie? You want to have everything we do in sleepovers? You want to have some fun? Pillow fights? Marshmallows? Oh yeah, let’s do that! We’ll put glitter all over ourselves…YAY! Let’s do that. Huh? I have another call at the moment.

Hello? What? You’re a unicorn pony. You want to come to my house so I can adopt you? Sure! Let’s do that. I’m gonna adopt you unicorn. Uh. Bye. I’ve got another call right now. WHAT?

Wait a minute – you’re a bad horse! I should not adopt you.

(I wish I knew what made her realize the unicorn pony was a “bad horse.” )

Hello? Oh man, I can’t believe this. Elsa and Anna are talking to me on the phone. Ohmygosh, I can’t believe it. We should totally have a sleepover some time. Oh, you want to? Both of you?! Sure, you’re invited.

M: J, it’s time to go to bed.

J: Mom (exasperated). I have 100 phone calls tonight.

 

 

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J and her Lego zoo. 

 

 

 

 

“Hot Dog!”

Like most kids, Julianna loves surprises. She always closes her eyes and prepares for sheer joy. If the surprise is an old friend (in her case, this usually means an adult who works in the medical field) she does a happy dance (head movements only, but there’s no doubt she’s happy) and draws them into her latest story. It’s like no time has passed since their last visit. If it’s a new toy, her eyes light up and she says “I love it!”

Like many adults, I don’t like surprises. I plan so that I’m never caught off guard. Life is safer this way, less messy and more efficient. Besides, hopeful anticipation can backfire. Disappointment hurts – badly.

Control is an illusion, though, and even the most skillful planners get surprised sometimes.

When I came home on Friday and stepped into Julianna’s room, something was different. Julianna was saying something to me, but I couldn’t focus on her words. Something had changed, and it was throwing me off.

In an instant, it came to me. Her voice was loud — booming by her standards. And she was trying to tell me that she had a “different kind of chicken pox.”

 

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The chicken pox was acquired with a pink marker – J’s idea for April Fool’s. If you look closely at the picture, you can see why J’s voice was so loud: she’s wearing a microphone.

As you may know, J’s choice changed a few weeks ago. For no reason other than CMT from hell, it got soft and weak. It’s led to more quiet moments, and that feels strange

It’s also made me sad. J’s voice is truly her instrument. With it, we have access to her lovely mind and fantastic imagination. Every day, she says something that startles me: how can she know that? And she is so funny.

She communicates without words, of course, but I love her words — and she loves being understood perfectly.

The microphone was Grandma’s idea, and it has worked brilliantly. She can play longer, and with even more spirit. It’s led to more stories, more silliness, more happiness. Who knew that a $30 microphone would provide so much joy?

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The microphone also comes with a headset. It doesn’t work as well, but J thinks it “looks cool.” 

For the surprise-adverse, life can be scary. Sometimes you lower your expectations – drastically – and tell yourself that it will protect you from disappointment. It works to some extent, but anesthesia is not selective: if you numb yourself from pain, it’s hard to experience joy.

And so we go back our girl J. Life for her has not been predictable, kind or easy, and there have been plenty of nasty surprises and loss. She’s not bitter, though, and she’s not beaten. She takes delight – easily, and often. She is a surprise. If we view things through her eyes, everything looks a little brighter. Unpredictable, still…but not so scary.

 

P.S.

The last pages of Julianna’s Adventures depicts J’s love of surprises and lack of fear. It is difficult to keep up with her imagination sometimes, and, to be honest, I struggled with this story a bit. How could I write it so that people would understand? This is how we ended it:

In the last scene, a blue unicorn leads us…somewhere.

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Julianna is not afraid, of course: Just kidding…It’s just the next adventure!

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On the last page, J sits in the boat, ready and unafraid. We have a globe with a rainbow around it. Julianna asked Christine to draw it that way, but it wasn’t clear why. When I asked her, J said “Because it’s God’s promise to the world.”

PPS: Julianna talks to herself pretty frequently, and the microphone has let us into more of her inner dialogue. This is a pep talk, J-style:

J: Hot dog!

M: Hmmm?

J: I’m prepared for anything. I’ve got my BiPAP, my chair, my cart, my microphone, my pillows, my family….

An Offer

Happy April!

This week, I give you pictures, a conversation an offer and a correction.

Pictures: Spring has sprung…

 

Easter involved an in-house egg/Easter loot hunt.

 

Sometimes, Julianna reminds me of the tiniest, most fabulous 80-something.

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J: Mom, I’m tanning!

 

Crazy hair day with her (FaceTime) kindergarten class.

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A conversation

Every night, we end the day by reading Calvin and Hobbes. A few nights ago, we read a strip in which Calvin asks Hobbes discuss what they would choose if they could have just one wish.

Hobbes wants a sandwich. Calvin, ever the pragmatist, wants money.

M: Julianna, what would you want?

J: she’s quiet for a minute. I would want to not have CMT.

M: I know, Julianna. That would be my wish too.

J: What would it be like if I didn’t have CMT?

M: You would be able to walk and run. You wouldn’t need your mask.

J: But my mask would miss me.

M: I think I think your mask would be OK. It would mean that you could breathe on your own.

J: But I wouldn’t want it to feel left out.

M: Hmmm. Well maybe you could keep it in your room but not use it. I think your mask would be happy for you…

Julianna is quiet.

M: Julianna, do you feel sad about having CMT?

J: Yes. I don’t remember what it feels like to walk because I’ve had CMT for so long.

M: I know…I’m sorry. I don’t mean to bring you down. When I asked you the wish question, I thought you’d talk about toys.

J: quickly — Toys are important too!

 

The Offer:

We are delighted to share that, so far, Julianna’s book has raised $870 for CMTA!

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To everyone who has donated and/or purchased the book – THANK YOU.

For the month of April, we will send a signed  (by Alex) and thumb printed (by J)  copy of Julianna’s Adventures to one person who donates to CMTA (any amount) for Julianna.

After you donate, please send me an e-mail to enter the drawing:

julianna.yuri@gmail.com

 

We have now raised about $21,000 for CMTA. Amazing! But still quite a ways to go…

Help J fight CMT — donate to CMTA here:

Support independent publishing: Buy this book on Lulu.

The Correction:

In Julianna’s Adventures, the blue swimming unicorn in Chapter 3 was incorrectly identified as male.

J: Mom, she’s a girl! Girls can be blue…

The author is correct. The editor regrets the error.