An Offer

Happy April!

This week, I give you pictures, a conversation an offer and a correction.

Pictures: Spring has sprung…


Easter involved an in-house egg/Easter loot hunt.


Sometimes, Julianna reminds me of the tiniest, most fabulous 80-something.


J: Mom, I’m tanning!


Crazy hair day with her (FaceTime) kindergarten class.


A conversation

Every night, we end the day by reading Calvin and Hobbes. A few nights ago, we read a strip in which Calvin asks Hobbes discuss what they would choose if they could have just one wish.

Hobbes wants a sandwich. Calvin, ever the pragmatist, wants money.

M: Julianna, what would you want?

J: she’s quiet for a minute. I would want to not have CMT.

M: I know, Julianna. That would be my wish too.

J: What would it be like if I didn’t have CMT?

M: You would be able to walk and run. You wouldn’t need your mask.

J: But my mask would miss me.

M: I think I think your mask would be OK. It would mean that you could breathe on your own.

J: But I wouldn’t want it to feel left out.

M: Hmmm. Well maybe you could keep it in your room but not use it. I think your mask would be happy for you…

Julianna is quiet.

M: Julianna, do you feel sad about having CMT?

J: Yes. I don’t remember what it feels like to walk because I’ve had CMT for so long.

M: I know…I’m sorry. I don’t mean to bring you down. When I asked you the wish question, I thought you’d talk about toys.

J: quickly — Toys are important too!


The Offer:

We are delighted to share that, so far, Julianna’s book has raised $870 for CMTA!


To everyone who has donated and/or purchased the book – THANK YOU.

For the month of April, we will send a signed  (by Alex) and thumb printed (by J)  copy of Julianna’s Adventures to one person who donates to CMTA (any amount) for Julianna.

After you donate, please send me an e-mail to enter the drawing:


We have now raised about $21,000 for CMTA. Amazing! But still quite a ways to go…

Help J fight CMT — donate to CMTA here:

Support independent publishing: Buy this book on Lulu.

The Correction:

In Julianna’s Adventures, the blue swimming unicorn in Chapter 3 was incorrectly identified as male.

J: Mom, she’s a girl! Girls can be blue…

The author is correct. The editor regrets the error.

5 thoughts on “An Offer

  1. The book was a big hit with Sydney (2), Wyatt (3), Willow (4), and Addison (Addie…5)…..BIG HUGS from them and thank
    you for telling such fun adventures for us to read! Jullianna… are so creative and awesome!!! Love to you all


  2. The book is on my birthday wish list! If I don’t get it, I’ll buy it myself! Julianna has started something special with Grandmer Orchid and I! We’re looking into setting up a site specifically designed as a resource for finding characters, including mers and pirates of course, for groups in need or children and medically fragile individuals. We shall see how things progress and who knows, it may be a resource that goes international one day…you never know until you try! All our love Michelle, Steve, Alex and Julianna! You have inspired something special that may just bring joy to many, many more children. Prayers please that this comes to fruition! Blessings to you all and I’ll recommend the book on our FB pg!


  3. Aw I love it when you take Julianna’s lead & let her mother you over stuff – the last sentence made me giggle! But yes. The author is always right ..

    But also – a little bit sad (not the “boohoo” kind of sad, but the “aww man – darn you, spoilt surprise” kind of sad – the kind when EVERYONE’s talking abt the latest movie that you feel like you’re the only person who hasn’t watched it .. like me & Zootopia for now haha) that everyone else has got their book & even before I get mine – I already know there’s a girly blue unicorn in chapter 3. Boo, little bit sad because spoilers 😦

    That being said, it also makes me super excited to receive mine! & I blame international mail – 7 to 21 working days is a crazily long time … I hope I’ll receive it by the end of the upcoming week though, usually it never takes the full 21 (working) days & I think we’re into at least 7 already (can you tell I am secretly trying to will the mail to hurry up .. heheheh)

    How precious that J would consider the feelings of her BiPAP mask (does it have a name? Considering how you’ve described yr convo abt it, seems like .. like she would treat it like it had humanly attributes ie including a Name), cos I’m more like .. well when I got off crutches I didn’t really miss them. Like goodbye kids, nice knowing you but BYE! Hahahaha.

    Lastly in relation to The Offer (as discussed separately over email) – I’m so, so sorry I didn’t keep Alex in mind when I was making the autograph requests .. if the second copy hasn’t been mailed, could I request for Alex’s autograph on that, please?

    Have a good weekend everyone! Hoping the doctor (errr mother, sigh J this is complicated) managed to prescribe a good treatment plan for pink marker chicken pox! 😉


  4. This is so incredibly sweet. I have been scrolling through your posts for some time now and I sat down to write about some things in my life that have been troubling me when I clicked on this post and read every detail and pored over every photograph of sweet Julianna.

    She is incredibly brave. She is incredibly strong.
    You, mama, are an encouragement and inspiration!

    I have a 5 year old niece who would LOVE this – I’m excited to read it with her! Thank you !!! Go Julianna!


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