Not an Ordinary Girl

New Year’s has never been my thing. It carries too much expectation for change and improvement. That’s fine if the year stank (2014), but when it was great (2015), I’m not ready for things to change.

2015 was wonderful. Julianna was healthy for all but one week, and the one unhealthy weak was miraculously benign. Our pink, sparkly princess got a pink, sparkly room. We shared our story more publically than we could have dreamed, and this has given some meaning to our past pain. We laughed a lot and shed very few tears. It’s hard to imagine that things could get any better.

There are some troubling signs, though. Julianna is weaker — this is undeniable. She got over her cold largely unscathed, but she needs more respiratory support now. Her scoliosis is a lot worse. It’s also been almost one year since she was able to use her wheelchair. The ridiculously expensive and heavy power chair (in “pop star pink”) is taking up space, but it’s hard to give away. Doing this is an acknowledgement that her relentless and evil disease continues to rob Julianna – and us.


Summer 2013. Julianna loved her wheelchair, and she was a good driver. She liked to go FAST – I smile thinking about how she always “forgot” to change it to the (slower) indoor settings after being outside.

I’m not sure what to expect from 2016. To face it, I need to remember the hard-learned lessons of a past that I usually want to forget. (I wanted to elaborate more on these points — this was supposed to be a meatier post – but the words aren’t flowing today. )

1) Control is an illusion. God is real.

I can’t fix Julianna – my best isn’t good enough for that. I have to trust God.

2) I can’t see the full picture.

My mom/doctor instincts were correct, and J has an awful neuromuscular disease. But there has been beauty and grace in this life, and it has sustained us. I could not have imagined it because my vision is limited. I’m only human.

3) Enjoy the here and now. 

This is all we have, and it is good.


J gets a new doll.

J: She is ravishing!

M: Julianna, where did you learn that word? Do you know what it means?

J: It means super beautiful.

A triple ponytail (J’s idea)



Alex makes Julianna happier than anyone else, and he’s been doing a lot of it lately. In past winters, we didn’t allow this because he always seemed to have a cold. This winter, he’s been healthy and affectionate.

M: Alex, it’s so great that you’ve been snuggling with Julianna. She loves it.

A: Do you like seeing it?

M: Yes

A: (like he’s admitting a state secret) I like it too. She’s not an ordinary girl.

M: Why?

A: Because she has CMT — and she’s my SISTER!

10 thoughts on “Not an Ordinary Girl

  1. Hehe 🙂 well J, you look ravishing in your triple ponytail with flowers! I really like it ❤

    & oh, Alex. That's so cute & funny! But heartwarming. Cos well … I would figure that getting a 7ish year-old to admit he likes spending time with a girl (even if that's his sister) .. is indeed quite state-secret-like hahahaha so it's funny but ultra sweet that he would say that 😌 & yes Alex, she has CMT & she is YOUR SISTER! Both of you are so blessed to have each other ..

    Blessed 2016 all! x Keep me (us) updated on the book, I'm keen on it too!


  2. Happy New Year to you all , we really hope it’s a healthy, and fun year for Julianna . God bless Julianna and family. From Pedro, Sujin, and Jessica.


  3. Dear Michelle,

    You’ve managed to encapsulate the struggles of all humans in 1,2, and 3., and number one is something I battle with heavily when faced with something hurting my family. It sure does remind us of our limitations. I have been blessed/cursed with hard head, and just keep plowing through life trying to solve problems and bend will. No surprise it really doesn’t work that well. Thus your number 3.

    For not feeling that your writing was flowing, today hit the nail on the head.

    As always…wishing your family whatever it needs most every day!

    (Love the ponytails 🙂


  4. I’m a picu nurse and my 12 year old daughter has variants of unknown significance in the the genes that cause both CMT and Emery Dryfuss MD. Her lung function has declined and we use the same machines you do. It’s hard seeing the subtle and not so subtle changes. Keeping things “normal”, living life and pushing aside fears of the future is what we do. Your posts encourage me because I see someone else walking a similar path and being open about the joys mixed with the struggles. Thank you.


  5. Thanks once again for sharing with us the miraculous and amazing journey of Julianna as well as
    yours, Steve’s and Alex’s in providing her with love, happiness & comfort. You have all done the very
    best and you have all done it with beauty and grace.
    As you said, it is indeed in God’s hands and we will continue to hope and prayer that Julianna continues to stay healthy, happy and with you always!
    Wishing you a Happy New Year.
    God Bless You All,
    Sunday, January 3, 2016


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s