“I Triple Madly Love You”

Short and sweet peri-Christmas happenings. 

J is still not tired.

Homie is trying to put Julianna to bed.

H: Julianna, I can see that your eyes are tired.

Julianna does this:

H: Julianna, what are you doing?

J: These are my eyes. They’re not tired!


Playing – always


While making gingerbread houses, J asks us to decorate her forehead with gumdrops.


Ponytails for everyone! J also has braids – it’s her homage to Anna (of Arendelle).


J asked for this outfit and then said that she was on a train. The train was going to St. Louis, and the entire trip took only 3 seconds.

Julianna has been talking about going to  Homie’s house (in St. Louis) more these days. We used to visit over Christmas. These are pictures from our last trip there in December 2013. (J was 3 and Alex was 5.)


A Nice Moment

For over one year, J has only been able to sit up with the help of her Tumbleform (the purple chair that is in so many of her current pictures). I cannot remember the last time she was able to sit in my lap.

Last week, Steve called me into J’s room just to see this:



I’m not sure how this happened, and it didn’t last very long – but it was so great to see her in her daddy’s arms.

“I Triple Madly Love You”

said J to Homie.


Capturing Grace Photography

Brother Sweet Baboo


Alex has been more affectionate lately. I think that J’s cold scared him as well. (But they still fight. It hasn’t gone all saccharine around here.) Last weekend, he gave her an unsolicited hug. Julianna was in heaven.

J: Sweet Baboo… (note: we’ve been watching a lot of Peanuts lately)

Alex wrinkles his nose

M: Julianna, he’s your brother.

J: But I want to say both. Brother Sweet Baboo!

A: (under his breath )That’s even worse…

And tonight, there was this:


J asked Homie to read Calvin and Hobbes before bed. Homie has a hard time reading this book because the letters are small, so Alex jumped in. He stayed next to her in bed and read for over 30 minutes. Tonight, missed bedtimes were perfectly acceptable. The look on J’s face is another thing I want to remember forever.

16 thoughts on ““I Triple Madly Love You”

  1. As always, thank you for the update. Loved
    hearing about Julianna’s quick trip to St. Louis as well as her abudance of energy and
    desire to stay up as late as possible each night. And those photos, they’re priceless! : )
    Sweet dreams and God Bless each of you,
    Tue, Dec 22, 2015


  2. I always look forward to reading updates on your blog. Pls tell little J that from her little bed she is encouraging someone across the oceans (in Manila, Philippines) to be brave, to live, to love. I am blessed by your posts…the fingerprints of God’s merciful hand are all over your lives.


  3. Hahaha wow, the video of the un-tired eyes! Well Julianna, everyone has to sleep at night, whether they are tired or not – because if they don’t sleep at night just because they are not tired, they Will Definitely be tired the next day. & then they can’t go to work or school, or play with toys because well, tired people are cranky people .

    But the video of your super awake eyes was very cute anyway (I wish I did this when I was five too. I probably just screamed in protest instead of proving it to my mom by allowing my eyes to dance around like that. Haha)

    I love your 3-minute train to St Louis 😉 May I join you in your special train? Over here the government is planning for a high speed train (to shorten a cross-border journey that usually takes abt 6 hours by car), that takes about 1.5hours when the train is completed. But wow, 3-minutes – super! 😉

    Merry Christmas J & family! Christmas blessings & God’s abundant love be with you all – praying with & for you this holiday season.

    Much love from Singapore xx


  4. To Julianna she is playing. As her parents and brother are making beautiful memories. I watched as a friend’s daughter was ravaged by this cruel and unusual disease.I am so glad that you created this blog to bring awareness to how awful CF is and I hope you consider continuing so people can see that her going home is a blessing and a curse. my daughter wants to send her a dress with BLING (as if she needs more) for new years day. what size is she wearing now? If time permits with shipping please let me know in a facebook message or personal email. May God lift you all up an surround you in this holiday season!


  5. J…thank you for inspiring me each day since I read about you…you have been given wonderful and amazing parents!
    Not everyone got a mom or dad in life.
    I find myself enjoying parts of your life that you share and even chuckle to myself when reading. May God extend your life beyond what w can hope and by his mercy you will be able to live with out machines. You rock J! Keep sharing. Bless you family.


  6. J and family, my Christmas wishes for all of you are: health, time and miracles…

    Thank you for being such an inspiration, you help us all to appreciate the things that are really important in life. Alex, your parents and you are giving us an example of love and what is the real meaning of family and the true meaning of Christmas, every day is a gift, every possible time together, every loving moment, but most of all, the faith in God that keeps you strong.

    May God fill your body with strength and the health to keep going and I hope that one day soon enough you could have a miracle and get better, because you are a wonderful family and I have all the best wishes for you.

    Hugs and greetings from Panama.



  7. Thank you for sharing this beautiful moment! It seems like you are all in sync emotionally and spiritually which is as it should be. Please know that my thoughts and prayers are with you all.


  8. How selfish of me….that every time I read your posts, Im so overwhelmed with love, compassion and pain and then I’m speechless. What do you say to this beautiful family? God bless her heart and soul. I am also half asian. She reminds me of me when I was her age. But she is a million times stronger then I have EVER been. What a wonderful big brother she has! I think of you and your family often. I want to gather you all in my arms and hold you all, take your pain from you. And although I can’t do this for you, the least I can do is wish you a Merry Christmas…… …….Prayers always………


  9. Julianna I love you so much. You eyes speak to us and say so much ….. You have a wonderful family and maybe you do not know but you have an extended family in different parts of the world. You see you power Julianna……. The world loves you for who you are …a brave heart.

    Lots of love and Merry christmas


  10. God Bless You All for sharing your precious moments. I so look forward to every tid-bit and treasure your beautiful memories in my heart. Your story has helped me more than you know, every smile and expression is priceless. Thank You, and Merry Merry Christmas! Lots or Love & Hugs!


  11. Merry Christmas Julianna, Michelle, Steve, and Alex, hope your Christmas is wonderful, and I hope Julianna and Alex get lots of nice gifts. I hope Julianna is feeling good. Sending you love and prayers from your friends in Toronto. Pedro, Sujin and Jessica.


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