Four Months

It’s harder now.

In the beginning, I was anesthetized by shock. I still can’t believe it, but I can feel and see change all around me. And she is still gone.

The weather has turned, and the stores tell me that it’s almost Halloween — and Christmas. I wonder what she would have been this year. Last year, I pointed to her closet full of princess dresses and asked why she needed a Halloween costume.

“Mom…”

When she said it like that, it meant “Do I really have to state the obvious?”

It was my cue to fall in line. Of course — who dresses up as themselves on Halloween? And that’s why she was a cowgirl last year.

 

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Julianna, of course, didn’t need a holiday to dress up. Here, she is “a mummy in a tutu”

 

 

How I miss her clarity, her way of distilling whatever life threw at her (and it was a lot) and championing just the important things.

It’s not that she had a simple mind. She said that her brain was “always going,” and I believe it. She was an effervescent deep thinker. I think that she gave us just the tip of the iceberg, the things she thought we could handle.

I wonder if I do the same thing. Writing has become my way of distilling all the stuff that is swirling around. Lately, it hasn’t been very palatable. It doesn’t seem to fit onto this blog, the pale pink space intended as a tribute my Julianna Yuri.

I want it to be lovely because she was lovely. What she went through, though, was hideous.

Here’s the iceberg, the part I can I can put into words, that is: My world has been rocked and nothing makes sense anymore.

I have shoes and t-shirts that have been with me longer than the time I got with my daughter. Many, actually. I threw some out when I realized this. Why is it so easy to hang onto meaningless things and lose what is precious? (Even in my mini-rage, I can hear her. Mom — don’t throw them away! What did they do to you? )

This is writer’s block with a side of grief: there will be no new stories, no new conversations.

I had a daughter. Everything about her physical presence on earth was a struggle: my pregnancy, six months of colic, the quest to walk, the fight to live, the realization that she wouldn’t, witnessing the deterioration of a five year old body.

The easy thing? Loving her. She was pure joy.

So it comes down to love. It always does, and it saves me. It’s the only thing stronger than the pain.

My sweet Julianna – I love you so much.

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I remember….

How proud Julianna was of being in kindergarten. This is her, reading to her class via FaceTime. (Somehow, I take great comfort in knowing that she learned to read…)

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Knowing that your child is loved and remembered is a salve to the rawest of wounds.

Earlier this month, I learned that this is up in Julianna’s school. The toys and program are from her tea party. The note inside reads:

Julianna attended Woodburn Elementary for preschool and kindergarten. Although she was unable to attend school as much as she would have liked, her presence was felt in her classroom. In kindergarten, Julianna FaceTimed with her class every day. Her time with us was much too short, but she will always be a Woodburn Wolf. She left a lasting impression on all who had the privilege to know her.

— Julianna Snow, 2010-2016, Class of 2028

 

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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.

 

 

 

Stand. to End CMT

 

J: Does CMT affect my heart?

M: No. Your heart is perfect. 

J: Hooray! Thumbs up for my heart!!!

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I miss that heart, so very much.

If there is anything good that come out of grief and anger, it is action — and a renewed sense of urgency. CMTA shares this with me, and they launched a new campaign today: Stand and Give 5.

 

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Age 2. With the help of physical therapy, orthotics, Daddy and pink socks — she stood.

 

 

Stand: because, though CMT robbed Julianna of the ability to stand physically, she never stopped standing — to fight CMT.

5: because she graced us with five magical years.

Please visit Julianna’s Stand and Give 5 page here:

If able, please give whatever you can. Increments of 5 are great – $5, $50, $500 — whatever you can. Then tag 5 people and ask them to do the same. And if you are a social mediate, post a picture that says why you stand.

 

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#EndCMT, #StandandGiveMe5

 

 

You have been so generous, and I still hate asking for money. But this disease needs a breakthrough. Please take a stand — for Julianna.