Pain and Wonder

June 4, 2016 / Michelle Moon / 11 Comments

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

Sunrise

Sunset

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?

Photo by Charles Gullung.

A Thread

May 21, 2016 / Michelle Moon / 17 Comments

Life isn’t for the faint of heart around here.

Last Friday was awful. We truly did not know where things were going.

J’s overnight recovery was miraculous. She is back to being the vibrant, cheerful, outrageous ,five-going-on-sixteen-going-on-ninety year-old that we know and love. What a relief!

Earlier today, as I was thinking about all of this this, and about what a difference a week makes, it happened again. Another twist: her new feeding tube stopped flushing.

As I gathered up the supplies to help Steve troubleshoot, my mind raced and wailed: You’ve got to be kidding me. We can’t do this again. Why now?? It’s only been a week…

We tried flushing with soda, hoping it’d break up whatever was blocking the tube. Please let it work, please let it work…No luck. This is not good….

Julianna, displaying her usual and perfect situational awareness, tried to take charge:

J: Text K, (our hospice nurse) – tell her everything! Translation: This is not amateur hour, folks.

We told J to hold on while we did one more thing. I rolled her onto her side as we prepared to try a warm water flush, and SUCCESS! It flushed, and our few moments of terror were over.

It took a lot longer for my nerves to recover, and even as I write this, I’m still in partial fight or flight. We just never know what will happen around here.

Julianna’s life hangs by a thread. I like to imagine it a brilliant, sparkling, pink gossamer thread with a core of steel, but the reality is far less glamorous.

The ugly truth is that she is dependent on machines for vital functions. Things here hang not by threads, but by tubes made of rubber and plastic. And even with the best and most vigilant care, machines and tubes fail.

It’s like that for all of us, really. Those blessed with good health may never know what it’s like to need a machine to breathe, but we are all eventually confronted with the fragility of life. The difference can come down to an extra fraction of a second in the passing lane or a micro-deletion on a gene: we are all hanging by a thread.

Knowledge like this can fill us with fear and paralyze. It can also lead to more humility and more appreciation. Sometimes it does all of this – all in the same evening.

Hold on to the sweet and the good.

This week:

Julianna bloomed:

And played hide and seek:

And tried a new look — Princess Rock Star Bunny:

And, in case clarification is needed on my “five going on sixteen going on ninety” characterization:

J: When I’m 13, I will be a teenager?

M: Yes.

J: Will I be annoying?

M: I don’t know. Will you?

J: I think I’ll be a little annoying, but not as annoying as a regular teenager.

M: Why?

J: Because, you know, I’m, like, a princess.

Love is a Superpower

April 27, 2016 / Michelle Moon / 15 Comments

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.

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.

“Rockstar, BAM!”

April 24, 2016April 24, 2016 / Michelle Moon / 11 Comments

“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.

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.

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

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.

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

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.”

April 17, 2016April 17, 2016 / Michelle Moon / 11 Comments

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.

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

“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.

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.

J and her Lego zoo.

“Hot Dog!”

April 7, 2016 / Michelle Moon / 9 Comments

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.”

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?

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.

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

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….

“Does the CMT make it hard to talk?”

March 12, 2016 / Michelle Moon / 22 Comments

Before I dreamed of becoming a mother, wife or a doctor, I wanted to write.

I didn’t have anything to write until my heart was broken, and I didn’t have the courage to share until I latched onto hope. I am grateful to finally be writing. It is one of the most satisfying but difficult things I’ve attempted.

One of the things that I struggle with sometimes is deciding on the tone of my posts. Our story is painful; Julianna is a riot. I’m sad; I’m hopeful. We are not a normal family; we’re just like every other family.

June 2015, Capturing Grace Photography

For example, the other day, Julianna asked me if she will one day lose her ability to speak. She was lying in bed on one her “body breaks.” Her spoken thoughts are like little arrows sometimes, unexpected and piercing.

J: Will I not be able to talk?

M: I don’t think so, Julianna.

J: Does the CMT make it hard to talk?

M: It has in you, sweetie.

J: Why?

M: Because you need muscles to talk, and to breathe. And that affects your talking. Your voice is softer now, but that’s OK. I understand you perfectly, and I think I always will.

J: My voice sounds the same to me, but softer to everyone else.

M: Yes, that probably right. It sounds the same to you. Julianna – do you worry that you won’t be able to talk one day?

J: Yes.

M: I don’t think that will happen. God knows how important it is for you to talk. I think He’ll make it so that you can always talk. I just believe it.

J: It’s up to God.

M: Yes – it is.

An hour later, we had this conversation as I was getting Julianna ready for bed.

J: Here – I made lunch for you.

M: Thank you.

J: It’s a sandwich, an apple and a banana. And for a drink, I gave you milk. It’s in a brown paper bag.

M: Thanks – that’s so kind of you.

J: Eat your sandwich.

M: The sandwich says “Don’t eat me! Don’t eat me!”

J: Just eat it.

M: But it’s talking to me.

J: Mom, if you just eat it, it will stop talking.

M: But then I’ll feel guilty…

J: Don’t worry. Christmas is a long time away.

M: What? So I’m only supposed to be good for Christmas?

J: OK, ok. I’ll make you something else….mac and cheese.

M: OK.

J: And it doesn’t talk. It doesn’t have eyes or a nose or a mouth. It just sits there.

That’s the way it is here. We have a five-year-old child who has experienced too much, and she thinks about things that most of us cannot (and do not want to) fathom. She’s also a little girl with a delightful imagination and rapier wit. She breaks and fills my heart.

Age 2, after a “poke”

And this is the only way I can write it. It seems disjointed and contradictory, but it’s our life. Joy exists with sadness. Bittersweet is its own flavor. Right now, that is enough.

Dec 2015, photo by Charles Gullung

“My Nerves Don’t Let Me Walk”

March 7, 2016March 7, 2016 / Michelle Moon / 25 Comments

There was a time that I couldn’t look at pictures like this.

We were living in Arizona when this picture was taken. Julianna was two and Alex was four. Julianna is sitting up straight, and there is no adult hovering or lending a steadying hand.

Today, I can look at these pictures, and it’s a good thing. Every mother should be able to look back and see her babies when they were actually babies.

The most obvious manifestation of Julianna’s CMT is weakness. These photographs show how CMT has steadily and cruelly taken Julianna’s physical strength. It’s painful to see what once was, but I am comforted by the knowledge that CMT has not been able to touch Julianna’s spirit. The pictures prove it.

Ten months old — and in a regular, non-medical high chair.

Fifteen months, in her first pair of orthotics (left) and in a physical therapy session (right — even then, she liked the bling.) We still didn’t have a diagnosis, and hoped that she was simply a late walker. I spent a lot of time thinking/praying “Please let this be an orthopedic issue (i.e., fixable), not a neurological one.”

At around eighteen months, she took her first steps with a walker. We made her do “laps” up and down this hall and bribed her with gummy bears. It felt like a miracle, and I longed to see more gains.

She’s almost two in this picture, and was at the height of her physical strength. Here, she is able to stand easily with one-hand support. I kept waiting for the day that she could stand unassisted (and maybe even walk down the aisle by herself) but it never came. She made a beautiful flower girl anyway.

She is two in these pictures. She plateaued in her physical progress, but was able to get out and do “normal” kid things. One of her favorite memories of St. Louis (on a visit to Homie) is this merry-go-round. She always chose the elephant. The picture with Alex is during our first month in Washington state. She is almost three, and we were able to get her out in just an umbrella stroller.

Left: First day of school! Preschool for Julianna, kindergarten for Alex. J had just turned three, and was able to walk short distances (i.e., 20 feet or so) with her walker. She usually had a helmet (right) on while walking, because she wasn’t very steady. She went to school only a few months, and it was then that we started noticing a decline. It got harder and harder to coax her to walk, but we kept on her.

Julianna never made it back to school after the winter holidays that year. In January 2014, our world changed with a runny nose. She would be hospitalized three times that year for respiratory failure. The January admission was the worst one. She was in for four weeks and lost a lot of strength. She was never able to use her walker again after she got out. Here, she’s still in the hospital, but is on the mend and doing physical therapy. At that point, I was happy that she survived: that she was still able to stand was bonus.

Summer 2014 — almost four. Her walker went into the garage, and J’s physical therapist let us borrow one with torso support. She wasn’t able to cover much ground with it, but it was better than nothing. She was having difficulty standing with assistance at this point.

Also that summer, we got a stander. This let Julianna bear some weight while supported. She is using it to paint (right). When she needed a break, she could recline. She didn’t love it, but the large “desk” was a good surface for playing and projects.

This was also the summer that scoliosis came into the picture. We tried a few different braces, but she hated them. (We can’t find any pictures where she looks like her happy self in a brace — this is the best one.) Worse still, they pressed on her abdomen and made her throw up, which led to aspiration. This was probably the hardest time for us. She was losing the ability to even sit up (right).

A bright spot amidst all the decline was her power wheelchair. It gave her freedom, and she liked to go FAST! (She would always “forget” to switch back to the slower indoor speed when coming from outside…) This is from January 2015. She drove into her princess room for the first time during her Make-A-Wish party. I am so grateful that she was able to do this on her own. Soon after this picture, her worsening scoliosis and arm strength made it impossible for her to use her power wheelchair. It sat in our dining room for over a year. It was a painful reminder, but we didn’t want to give it away. I also didn’t know how Julianna would feel. Last month, we asked, and her answer was simple: “Yes. Give it away.” No hesitation, no self-pity — it’s her way.

capturing grace photography

And now, we rely on the ubiquitous TumbleForm chair. It’s the only thing that is able to keep Julianna upright. She needs her BiPAP and suction with her at all times, which makes movement (even from room to room) difficult. She gets around on a custom made cart from Grandpa.

And speaking of that cart:

M: Did you know that if I could snap my fingers and take your CMT for you, I’d do it? Then I would have CMT and you wouldn’t. That would be so great.

J: But then you wouldn’t be able to walk.

M: I know. But it’d be worth it.

J: Mom, I don’t think that’s a good idea.

M: Why not?

J: Because you’d break the chair cart. You’re really heavy.

M: I wouldn’t have to use that, silly. I’d have something else.

J: Like a wheelchair?

M: Yes.

J – Oh! Laughs silently

“I’m Just An Orphan From the Sea”

February 17, 2016February 17, 2016 / Michelle Moon / 15 Comments

A few days ago, Julianna received a wonderful gift…

…and the mermaid tail begat a mermaid tale.

Julianna, sitting in her pink cart, declared “ Hello! I’m Julianna. I’m a mermaid. “

Like all good stories, the tale of how Julianna the mermaid came to land was revealed layer by layer. My thoughts in italics.

J: I was blown in from a storm. I was at the surface, and then the wind took me and BLEW me right onto your deck! And I said “Oh, what’s this? Where am I?” And then I opened the door and I was shocked – there were humans! I’ve never seen a mom and dad to live with before…

M: Really?

J: I’m just an orphan from the sea. (Seriously, where does she get this stuff? So dramatic!)

She continued

J: And their last name was Snow, and my last name is Snow. It’s like I was meant for this family. (Notice how she’s talking about us – to us.)

We adopted her, of course — even though the details of her orphan status were somewhat murky.

M: And what happened to your parents?

J: Her voice is grave and quiet — Mom, mermaids die sometimes.

M: Oh, so your parents died?

J: nods

M: And you were all alone?

J: Yes.

M: You poor thing. How long have you been alone?

J: thinks for a few seconds — 22 days.

As bedtime approached, the conversation shifted.

J: Do you have any rooms?

M: Yes, we have several rooms.

J: Do you have any soft, pretty rooms?

M: Most of our rooms are plain, but we do have one pink, sparkly princess room. But you’re a mermaid, not a princess – would that bother you?

J: I’m a princess mermaid! I like pink!

We wheeled our princess mermaid into her new room.

J: Ooh, I’ve never seen pink sparkly walls like this before!

We put her in bed:

J: Ooh, this bed is so soft. My shell bed in the sea was hard.

What’s that black thing? (looks at the TV)

M: A TV.

J: A TV? What’s that?

And it went on and on:

J: What is that thing? It’s Hello Kitty, you say? Why does she not have a mouth? (It’s true – HK doesn’t’ have a mouth)…Have you heard of something called a book? I tried to make one out of seaweed in the ocean, but it did NOT go well. I’ve never had anyone read a book to me before…Is this a ponytail in my hair? I’ve never had a ponytail before! I couldn’t do this at sea… Can you turn on the black thing? So this is what TV is!

When it was finally bedtime (turning on “the black thing” pushed things back a while – clever mermaid trick), J tried to convince us to let her keep her tail on all night.

J: But mom, I’m a mermaid!!

M: Sorry – you can’t wear this all night.

After a few of these exchanges,

J: OK – Let me tell you something. I have a secret

M: What?

J: whispers — I can turn into a human

M: How?

J: shrugs her shoulders – I just do.

M: OK, so you can be a human for the night, and you can switch back to being a mermaid in the morning?

J: Yes!

The tail came off. I tucked J in and settled into the chair next to her bed. After about 10 minutes,

J: Mom, come here.

M: What?

J: I have to tell you something.

M: OK. I walk over to her.

J: I’m still a mermaid even though I have legs.

Bonus Features

Mummy in a tutu.

Can you guess what this is?

Animal stickers on green foam? Yes, but the J-inspired version is better:

The green foam is J’s “Handy-Pack” (which is her version of an iPad). She asked us to put the animal pictures on her Handy-Pack and told us that she was FaceTiming with the animal shelter.

CMTA fundraising update:

Thanks to your generosity, we have raised over $2000 in just a few days. Our total is now just shy of $17,000!! This is amazing. Thank you, thank you.

The number should go higher soon. A few weeks ago, World Class Martial Arts in Camas, WA held a fundraiser for CMTA in Julianna’s honor. This is Alex participating in the “Board Break-A-Thon.” (video editing by Steve). WCMA raised over $3000 for CMTA.

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Help our Julianna make a world without CMT — please donate to CMTA.

All Mixed Up

February 1, 2016February 1, 2016 / Michelle Moon / 20 Comments

Except for ten scary minutes, Julianna had a great weekend.

The good: J is getting good sleep, and her heart rate is normalizing. It was too fast before, a sign that she was uncomfortable and working hard to fight her latest battle. We were able to restart her feeds, albeit at a lower rate. She played and played.

The bad: A few hours into her full rate of feeding on Saturday, J threw up. Her feeds go into her small intestine, so there’s not much in her stomach to come up. A little bit can be devastating, though,so we were alarmed. On Sunday, we kept her feed rate down, and things were fine.

Julianna got her g-tube (feeding tube to the stomach) placed in June 2014. It was supposed to make feeding easier and safer, but for some still unknown reason, it didn’t work. J couldn’t tolerate g-tube feeds and we lived with the constant fear of her throwing up. We tried everything – different formulas, rates, body positions, medications. Nothing worked: she still threw up every single day. It was a difficult time. We knew that she was at high risk of aspiration but were helpless to stop it.

After four months, it happened and J ended up in the PICU again with aspiration pneumonia. The feeding issue was addressed with a G-J tube (a tube that lets us feed her through her small intestine, or jejunum). It’s not a permanent fix, and we were warned that it may not work at all — but it was really the only option. Fortunately, it has worked beautifully. Her G-J tube has been in for fifteen months now (I think that’s some sort of record), and until a few days ago, we had no problems with feeding.

I’ll admit, the thought of going through more feeding problems makes me nervous. It is scary when a vital act (feeding your child) is dangerous. We have to watch her even more carefully now, because these events occur suddenly and silently.

I learned a while ago that control is an illusion. Julianna’s care is highly regulated. We talk about BiPAP settings, heart rate, liters of oxygen, millimeters of water, how much saline to put in her nebulizer. We aim for perfection, but nothing in this world is perfect. We will never be enough – but we have to keep trying.

There’s a temptation when writing sometimes to shove things into a nice package and put a bow on it — Here. The stuff inside isn’t so pretty, but I wrapped it up for you. Does that make it OK?

Our reality is more complicated. The ugly and the beautiful are all mixed up. She fills my heart, but also breaks it. The status quo is tenuous, and I’m scared of change. On most days, the beautiful and the delightful are stronger than the ugly and the fear – and that has to be enough.

For the last few days, she has talked a lot about food – she wants to eat pretzels, biscuits, ice cream, salt, crunch: “Does anyone have some food here?? I LOVE pretzels.” She hasn’t gotten her usual volume of tube feeds recently, so I thought this explained all of the food talk. She told me in her matter-of-fact-without-any-self-pity way that she is always hungry. This is the strength that breaks my heart.

As always (thank GOD!), she wants to play. This is not really a pretty bow. It’s her world, and it has constant hunger mixed up with courage and magic. If I let her draw me in, it is enough.

On Friday, Julianna was an Asian princess with PJ’s from Singapore (Thank you, W!) and a silk fan blanket.

On Saturday, Julianna decided that her toys needed a spa day. Her unicorn and giraffe got pedicures. She insisted that they take naps afterwards, because she knows that spas are supposed to be relaxing. Afterwards, she defended them valiantly against the unicorn/giraffe “friends” who disapproved pink and blue hooves.

Julianna Yuri

Uncategorized

Pain and Wonder

This week,

A Thread

This week:

Love is a Superpower

“Rockstar, BAM!”

This week….

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

“Hot Dog!”

“Does the CMT make it hard to talk?”

“My Nerves Don’t Let Me Walk”

“I’m Just An Orphan From the Sea”

…and the mermaid tail begat a mermaid tale.

Bonus Features

CMTA fundraising update:

Help our Julianna make a world without CMT — please donate to CMTA.

All Mixed Up