We Are All Awkward Unicorns

Earlier this year, CMTA asked for people to organize walks all around the country for CMT awareness. “It would be so great to get Julianna out for something like this,” I thought. I knew she’d love it, but it was the same old story: stupid CMT. It was hard to even leave her room.

After she died, I contacted CMTA. “We want to walk,” I told them. We didn’t have the energy to organize it, but if someone stepped up, we would be there. We’d bring Awkward Unicorn (a Julianna surrogate?) and walk – for her, and because of her.

And it happened. Yesterday, in a park with soaring trees, we gathered for Portland’s first ever CMTA walk.

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The weather  last week was quintessential gray and rainy Pacific Northwest — but yesterday we got a break.

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We had a poncho ready for AwkUni, but didn’t need it. 

I said a few things, and learned many more:

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It takes guts to wear a tutu! (Especially if you have one…) But compared to what Julianna had to face every single minute of every day, it was nothing. 

 

Believe it or not, this was the first time we came together — in person — with the CMT community. We’ve known for years that Julianna had CMT, but didn’t think to reach out. Yes, we were very busy keeping Julianna alive, but it was more than that.

Our CMT is like a freak of nature. In two generations, it went from almost nothing (Steve) to deadly (Julianna). What does that? (We will have an answer soon – I know it). So even though we had a diagnosis, I didn’t feel that we fit in with the CMT community.

Yesterday, I met and learned of others with CMT who also don’t feel like they fit in. There are over eighty different types of CMT, and there is a wide range of severity even within the same type. Many are the first in their family to be diagnosed. So…none of us “fit in.” We are all awkward unicorns.

CMT is a frustrating disease. It’s hard to explain, hard to predict, hard to diagnose — and I say this as a neurologist and a mother who has suffered the ultimate loss because of this awful disease.  I have wanted to throw my hands up in the air many, many times. Except that it killed our daughter — so I can’t. I won’t.

My plea (to the world, but especially to the CMT community) is this: We are each other’s best hope. If we come together, we can beat this thing. If we don’t act, who will?

Whatever you can do — walk, talk, write, give, get people to give, educate, be educated, dye your hair blue — do it. Even if it feels awkward.

 

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Heavy lifting is best done TOGETHER.

Huge thanks to Ori and Debbie (and family) for all the work you did to make this walk possible.

 

 

 

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.

 

“Mom, I’m OK.”

This clip is from February 2013. Julianna was two, and she had just gone through her first PICU admission for respiratory failure a few weeks prior. It was “only” eleven days (and the mildest of all her PICU admissions) but it was my introduction to hell on earth.

A few hours before this clip was taken, Julianna had woken up with a runny nose. It was nothing — but in our new world, it was terrifying. The trauma of the PICU was fresh, and I was afraid. Should I stay home from work so that I could watch her like a hawk and worry more thoroughly?

My mom was visiting at the time and told me to go – she’d watch Julianna, and it would be fine. She sent the “I’m OK” clip later that day to reassure me.

Julianna ended up getting sick again. I couldn’t believe it – again? Couldn’t we get a break? Why did a two-year-old have to go through something like this? It was not OK.

Fortunately, she wasn’t hospital sick this time. We went through some scary, sleepless nights, but she recovered. So it was OK — in the end.

And that’s the way it is: not OK, but ultimately…OK. Not OK that Julianna has suffered and lost (and she knows it). OK, because she acts like it doesn’t matter. Not OK that a child has to be stoic for her mother. OK (and such a blessing) that she has taught me to worry less and live more.

Take this as an example:

J: Can we visit Ellie?

M: She lives really far away, sweetie. I don’t think so.

J: But we can go on an airplane…

M: It’s a little hard for you to go on an airplane now, Julianna. I’m sorry, but I don’t think we can do it.

J: Because of my mask?

M: Yes.

J: I wish I didn’t have to have my mask.

M: I know.

J: So will you and Daddy and Alex go?

M: And leave you here? No way. Do you really think we would do that?

J: shakes her head

M: I’m sorry we can’t go on trips. I wish we could take you places…

J: I have problems, but I’m OK.

M: Oh Julianna…we all have problems. Do you feel bad about it?

J: No. I’m OK…whispers. Let me tell you something

M: I lean in. OK – what?

J: whispering: let’s trick the CMT and give it poison. And then it will go away.

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Dec 2013 — J’s last airplane trip.

 

 

I have problems, but I’m OK.

Tell me, how do I respond to this with anything other than abject humility and the promise to try, to never lose hope? I have to be OK too, for her and because of her.

Today, she tells me that she’s OK in the softest of voices (the softest it’s ever been.) It’s in her silent laugh, and in the way she insists on playing even though it’s getting harder to sit up (“Body break, schmody break,” she said yesterday.)

It’s OK, though, one day, it will be so very wrong.

Ultimately — in the end — it will be OK.

This is from April 2014. Julianna had just spent two weeks in the PICU and was finally home. Alex had decided to welcome her back by decorating the house with streamers and balloons, and this is J’s first look. Her voice (much stronger than it is today) was weak from the hospitalization, so it’s hard to understand:

The words don’t matter. The look on her face says it all:  pure joy, loud and clear. After another hard battle and heartbreak, things were OK again.

Pictures from the week:

J was determined not to be pinched.

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Enjoying the view with a few dozen friends.

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Selfie

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Get your copy of “Julianna’s Adventures” today and help J raise money for CMTA!!
Support independent publishing: Buy this book on Lulu.
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“Does the CMT make it hard to talk?”

 

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.

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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.

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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.

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Dec 2015, photo by Charles Gullung

 

“My Nerves Don’t Let Me Walk”

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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.

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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.”

 

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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.

 

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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.

 

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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.

 

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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).

 

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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.

 

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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