“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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28 thoughts on ““Mom, I’m OK.”

  1. Julianna and Family,
    My family and I read your blog faithfully and really look forward to hearing how all of you are doing each week. My 12 year old son, Elijah, attends WCMA and participated in the board break-a-thon. Elijah took home one of the CMT bracelets and I kid you not, he hasn’t taken it off since the fundraiser. You are all very close to his (and our) hearts and you’re all in our daily thoughts and prayers. I wish you all a happy and wonderful week ahead. xo

    P.S. Elijah wanted to post a picture of himself wearing the bracelet but we haven’t figured out how to. We will look into it further in hopes of success!

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  2. Dearest Julianna,

    I read your conversation & felt all happy & sad at the same time – I love travelling too, & it makes me sad when I can’t visit people I want, too. But in your case – I found myself amazed at how you were able to put aside your own inability to take a plane, & ask the family to go for you – Ellie is blessed to know someone as selfless as you 🙂 but silly, they wouldn’t. Mom & Dad would want to be able to take care of you, & Alex wouldn’t like to go places far away without his little sister – so no they would never go off without you!

    Like how you’re unable to visit Ellie – I can’t visit you, much as I’d love to (it’s too far away, which means it will also take too long & cost too much! I don’t have that much money, & a penny isn’t enough for the trip. Haha.) .. but I’ve been thinking of you – first from the Christmas present (did you like it? I hope so!) & then the book (I *expect* your autograph, Julianna!) & now, this post.

    Yet with the little that I have .. I suppose I could still come & say hi, just .. not really in person 😉 Check your mailbox .. sometime! (Sorry, I don’t know how long it takes lol.)

    (Mommy Mish: I’m not gonna do anything weird, just maybe send a handwritten letter to Julianna haha. I could afford the 5 dollars of postage! Also – well, she could get to know me through my Mighty posts/you telling her abt me, but I suppose .. in the name of human connection, handwritten letters & snail mail, :p plus I don’t usually get the chance to write letters to 5-year-old full time mermaid princess, part time published authors very often!)

    love you dearie & have a lovely Monday J!

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      • Aw. Yay! I think so too. 🙂

        I should be able to mail something within the week, but – because it’s meant for Julianna .. while I have your address already, I shall be addressing the mail to Miss Julianna Yuri Snow instead, if that’s okay!

        (Because I like snail mail a lot too – I figure that’s my motive of online shopping .. to receive snail mail from me, to me. Haha. So I think it would make J’s day to receive mail addressed to her! Heehee.)

        My copy of the book’s shipped too! Can’t wait to read it 🙂

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  3. Michelle, I think some of my favorite words are, “Let me tell you something…” because I know I’m going to learn something very important! I can’t imagine how tough it is to go through the emotions that you have to experience moment to moment! You have no choice but to be brave for Julianna, and Alex, and you and Steve for each other. Each post is, appropriately, an emotional roller coaster because that is your reality! You open your heart to us and sometimes hearts break when they share the deepest parts with others and to a degree, our hearts break a little with you. We know that in the human body when a bone breaks it often heals stronger in that spot than it was before. One has to break down muscles to build them up when we exercise…with the part of us that feels our deepest, sometimes we must let that part break to to build up. Thank you for breaking my heart when you have. It has been a gift. When a post makes me cry, I treasure what I take away from it because it makes me a better person. You are all gifts to us! Julianna has been a teacher to so many adults! I’m sure that will make her happy to know! I’ll always love the words, “Let me tell you something…” from the moment I first heard them strung together by you and of course, originally by Julianna in the posts! They start something beautiful and teach everyone to love, live and learn in the moment! All my love to you, Steve, our special little mermaid princess Julianna and Alex, our junior pirate in training!
    Blessings always!

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  4. A – P.S. Please post on Souls Of The Sea! I’d love to introduce more of our mers to Julianna and her story! Let every one know her book is available! (place big smile here!) I have a birthday coming up and sharing the news that Julianna’s book is out would make me very happy! Thanks Michelle!

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  5. Prayers, so many prayers. For Julianna, for your family, for a treatment in time, for a cure, and that I discover what lessons I am to learn witnessing Julianna’s indomitable spirit. I look forward to receiving Julianna’s book which I also have a copy going to my daughter-in-law, the mother of my beautiful 3 year old granddaughter with early onset CMT1b. Thank you for allowing us a glimpse into Julianna’s world, her strength inspires me and I am a better person for it.

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  6. I did…and can’t wait to read it for myself and Julianna’s distant cousins….our grandchildren! I’ll have an intro to Julianna day with them! Right now they are busy watching “Jake the Pirate”. It’s break for two weeks so we have Sydney (2), Willow (4) both sister’s…..Wyatt (3) and Addie (5) ……..I would normally not have Addie (Addison) but will these two weeks a few days in there! So fun!!!!

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  7. Thank you for sharing your heart. Julianna continues to amaze me as you and your family do. I can never imagine this for my family. Julianna’s positive outlook and spirit really makes me smile.. and tear up. She is so special and I am Blessed to know and love her through you.

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  8. Hi J! I got an email today that said YOUR BOOK will be delivered to me soon!!!! I bought a copy just as soon as your mom said they were available!! So excited to read more about your adventures! You tell a GREAT story. 🙂 In fact, your book is inspiring me to write one too! Something I’ve thought about doing for a long time…it will be a children’s book based on the life and adventures of a very special kitty…the title is “Lily and Her Babies.” Thank you for being MY inspiration!!

    Lots of love to you J!

    Janice

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  9. I received an email, as well. Lulu should have the book to me in the next few days or so. I plan on reading it with my 6-year old daughter, Bree, and 3-year old son, Noah. I’ve got two older girls, as well, and I’ve described Julianna and her circumstances to them, so they may be interested, too. We’ll see, but regardless, I’ll post our reactions. And, if possible, maybe I can include a review on Lulu.

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  10. My daughter just gave me the January article from People magazine. So sorry about this journey you are on. But just want to say I back you 100%. My husband passed away a few months ago after a three-year cancer journey. We had those hard conversations. I placed the care of his body totally in his hands. When he said no to more chemo and to dialysis I was right there holding his hand. He died at home in his own bedroom. He had typed up the plan for his graduation party. He died in peace. I pray the same for Julianna.

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  11. I have a few chronic illnesses (nothing like CMT, though) and whenever I start to get down about it I can always count on Julianna to make me appreciate all I am still able to do. As well as reminding me that it’s all about perspective and a positive attitude. Julianna, and you, are so inspiring. This blog is doing so much more for people than you can ever imagine. Thank you for sharing it all.

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  12. Got the very cute book….Wilwlow and Syd were here when it came so while they played with playdough…..a new batch…….I read the whole book and showed them several of your bloggs….Willow was quite interested and Syd (2) watched a little while talking loudly along with me…sometimes singing…hehe…..but they really enjoyed the book…Willow is 4 and a little more attentive ….we alljust watch Peter Pan 2…….Their Mom and Dad (Dan and RaeLena) are at the movies watching Badman vs

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  13. The computer is going crazy all over the place ….erased some and so I’m signing off…..sorry for the mistakes above…love to you all…thanks for making the cute book!!!!

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  14. We just got our Julianna’s Adventures Book! We’re so excited to have it and just LOVE IT!!! Our family will always treasure it ♡ God Bless You!

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