“Remember Me Always”

Remember me always.

Who says this? Certainly not a child.

Julianna said this – a lot. It started when she was four. I don’t remember when I first heard those words, but it was some time after our first heaven conversation.

She said it when she presented me with a flower from the yard (really, a weed). Those words accompanied just about every card and drawing and gift that she gave.

Put it in your room, and remember me always.



So much to remember in this picture: this was her favorite outfit (“my colorful shirt and my colorful skirt”). She loved shaking her head and making those plastic earrings clink. And if you look close, you can see her Korean doll, Young-Hee. She was never without at least one of her friends. Photo by Aubrie LeGault.


When she had a gift for you, it became the most important thing. She needed to share it right away, and had to experience your delight – immediately.

 Don’t forget your kisses! Remember Julianna always.

When her nurses left for the day, she sent them out with kisses. She blew kisses, and told them to put them in their purse. It was never just one kiss. It was three or four or twenty. They could take them out when they needed, but they had to zip up their purse so that they wouldn’t run out. And if they did? No problem: the kisses never run out.

Every time she asked you to “remember me always,” it startled. The plea to remember her would make my heart swell and but it would also cut. What made her say this? She was so light, carefree and vibrant. You could feel it as soon as you walked into her room and got swept into her fantastic world.


Just another day in Julianna’s room. Not really, but you get the idea. Photo by Charles Gullung.


Julianna played harder than anyone I’ve ever known, but there was more. She was a deep thinker, an old soul. She talked about death, dying and heaven. And she told us what to do afterwards: remember me always.

And I do. In some ways, I feel like she is with me now more than ever before. I think about her all the time. I talk to her, and I feel her encouragement to give a little more, dress a little brighter and to just go for it (C’mon mom!). I see her in sunrises and sunsets, in pink flowers that grow wild. I see her in other children, and I know that she is finally able to run (or fly?) around and play – with children. Stupid CMT didn’t allow it here, but now she is free.


These just grow — all on their own. God takes care of them.

I miss her – so much.

She told me to remember her always. I do, and I will. Always, until I can see her again.


This week, we received this beautiful  note from our friend. This is how he remembers Julianna:

She ruled her kingdom with love and kindness (and a very strong will that her human subjects were pleased to accommodate.)

She learned from history’s greatest princesses, overcame all of their flaws and created a realm that put Camelot and Wonderland to shame. There was no challenge, or evil in her kingdom of love that could not be overcome, and all creatures, great and small had equal opportunity to manifest Julianna’s own character, through them.

Princess Julianna’s imagination was endless. C.S. Lewis and Tolkien would have been exhausted keeping up with her plots. And, as any great princess, she ruled over many realms. Each time I visited, it was a different one, with a vibrant backdrop, and multitudes of characters. With each character so well defined, that if a mere human tried to change the character, they would get “The Look” from the writer.

Julianna’s life is an epic story, within a story. A princess trapped in a tower by an evil dragon, now released by our Prince on a white horse, and placed in a wondrous castle.


And then there’s this: Julianna in the hospital, after the worst was over. She had been through hell, and decided that it was time to dance. I remember, and I learn from this amazing girl.



And remember this: you have ONE WEEK to get this Julianna-inspired t-shirt. All proceeds go to CMTA. The store closes on Friday 8/12/16.

Order here:


18 thoughts on ““Remember Me Always”

  1. I want to share that Julianna was in my thoughts all day today…she is not forgotten. The love and joy she gave those around her is such a beautiful gift. Thinking of the joy and love that Julianna spread to those around her, yesterday when you posted the link to the foot cream I ordered it for my little one thinking of how happy it will make her when she gets a surprise package in the mail. Then I ordered another for my sister. Just thinking of the smiles they will have when they receive their surprise packages makes me smile because I know that Julianna’s love and joy has been spread to them.

    Liked by 1 person

  2. Heaven’s precious little darling experiencing her complete freedom in eternity with her loving heavenly Father. Julianna is blessed, and so is her loving family that’s still in the earth. Michelle, Steve, and Alex may the great God of Heaven’s amazing grace sustain you daily.

    Liked by 1 person

  3. My favorite picture is that one with that colorful dress. Thank you for sharing. I think of Julianna a lot, mostly as I ride home on the bus and see the sunset. I never met her but I feel a very strong connection, once I saw her on TV I took an immediate attraction. I have seen a lot of children on TV , sickness, death etc but it’s something about Julianna that was special.

    I love the video clip of her dancing. Julianna was truly a happy child! Did not feel sorry for herself and wanted to spread happiness and love to everyone around her. Julianna was a special child. We should ALL learn from her, we might become a better world ………❤️❤️

    Liked by 1 person

  4. Dear Michelle,

    Thanks for how you continue to share the legacy of Julianna’s life. I think she had a God-given intuition about life that came through her suffering and her childlike wisdom. There is a reason Jesus told us we had to become like children to enter the Kingdom of Heaven. Julianna certainly shows us the way!

    All my love,

    Liked by 1 person

  5. We remember J and read her book often. The dancing video is just precious. As you said, those who are not long for this world are special and most likely perceive the world more as God had intended. She instinctively knew what really matters and thus was always closer to God then most of us. Those kind of lessons that she thought us are not forgotten and thus she is not going to be forgotten. Love and prayers.

    Liked by 1 person

  6. Remember me always!
    That comes very easy and very natural considering we are speaking about Princess J.
    I don’t think there is a day or night that Julianna’s smile and words don’t cross my mind
    and usually put a smile on my face or bring tears to my eyes. What a truly amazing, in-
    spiring and beautiful soul with wisdom well beyond her years.
    I loved hearing from you as well as having you share the note from a friend about Julianna.
    She captured her essence, her charm and her love and we will remember her always!
    God bless,
    Friday, 05 August 2016
    11:35 pm

    Liked by 1 person

  7. I look forward each day now, to getting up and looking to see if you have posted another blog. I just need to know how your family is doing, and that you are okay. I get to know that you are doing okay through your blogs, and this blog today gives me incredible joy! I can tell by reading your blog that you are beginning to more and more each day, spiritually heal inside from all the hurt and pain, and lack of full understanding associated with Julianna going to heaven. It was so good to read your blog today, on the things you remember about Julianna. How she was so concerned that you would always remember her, and almost equally as important—she did not want you to be sad! It is heartbreaking for such a little girl to have to bear the burden of those type of matters.
    Julianna’s dancing eyes video was spectacular! The “Note from Your Friend”, in my opinion (seriously) should be put in a beautiful “Princessy” Plaque and hung on the wall. It was phenomenal! I’m grateful to have been able to purchase the T-shirt, “Love is a super power”. When I wear it, it will just remind me of Julianna; and her inspiration/influence on my life. So I’ll wear it proudly, and often. A very sincere and heartfelt thank you, for reminding us (through today’s blog) just how wonderful she is, I’m looking forward (just as you are) to actually meeting her. For now, I will ALWAYS REMEMBER her! Julianna is not in my Past; she is now in my future.

    with much love,
    Lorna Redd


  8. After I posted, I just went back and got the opportunity to read all the comments before my post. Wow, Princess Julianna was truly loved and appreciated as “the Gift” (true treasure) she is.


  9. So grateful to read your thoughts about Julianna – thank you for continuing to share her with us. I keep Julianna’s book on my coffee table and remember her every single day. I ordered a tee to give to my adult middle daughter, who has developed into an amazing women full of beauty and appreciation for all her blessings. I know J. will be hiking along side Katie in Torrey Pines State Park when Katie is wearing Julianna’s inspiring message.

    God bless you and your family.



  10. I have so many favorite pictures of her I saved, the one in her pink dress with the young lady beside her with the blue dress, the one with the snow white book in her lap, any of them without her mask on, but one of my favorite pics is the one where her Mom and Dad are beside her, Julianna’s Mom is holding her arm pressing her head next to her and her Dad is giving her a kiss on the forehead and her eyes are locked on him with pure love, I’m sure in real time her eyes were back and forth on both, it looks like it was heaven before heaven for her.


  11. I just can’t imagine how much you must miss her – she was such a beautiful child, it’s clear that she was so full of life and optimism. My daughter started Kindergarten yesterday, & watching her beaming with excitement made me so happy, but in the back of my mind was sadness for Julianna & particularly you & the rest of your family, for not being able to have the same experience (though I know from your blog that J was able to start Kindergarten, and I’m glad for all of you that she was able to experience it in some way). Of course your heartbreak is experienced thousands of times over by other families forced to confront disease in their children as well. These children teach the rest of us how to value the moments that we have with our own children – I just wish that you didn’t have to take on that burden. But like you have said, Julianna is free now to do so much more than what her body would allow. Whatever time she lost to CMT in this life will be nothing but a brief flash in comparison to eternity.


  12. I ordered a shirt for myself, and I plan on wearing it as motivation to “make a moment” with my kids as often as I can. That’s Julianna’s legacy from my perspective. Love *is* a superpower, and it’s clear that J was a superhero in her own right, because she wielded that power more capably than just about anyone. Truth be told, I think she got that from you guys, because your love in nurturing her through such a difficult, short time on Earth showed through in every moment you made together. And that love still lingers in all the memories you’ve shared about her. I have no doubt it will sustain you until you rejoin her in Heaven. And that will be an amazing, joyful, *epic* reunion…with pink sparkles all around. God bless you and your family.


  13. My shirt is on it’s way here! I will wear it to an outdoor Passion drama about the last days of Christ in which I sing the part of Jesus mother at the cross. I just do the singing but some one else does the acting to the song. I can’t imagine a more fitting pace to wear a shirt that proclaims the power of love any more than this. I imagine that heaven is so much more warm and loving now that a little “Snow” has flown!
    A new princess arrived and no doubt she has a castle with a pink (probably several) sparkly room
    in it! So many wondrous things she must be doing and catching up on that CMT denied her here! She was truly one of the chosen emissaries of love and was an Ambassador along with her many other jobs (super hero, princess, mermaid, etc…) and she did all of them so well! This is a beautiful young, but “old soul” lady whose light will never burn out! They say you can always see farther at night because of the multitude of stars one can’t observe in the day. Julianna was one of the few stars that burned so brightly day and night, that her radiance has yet to diminish and personally, I believe it never will! She has people yet to reach in places she has yet to travel in ways we still haven’t imagined yet. Michele, some of those ways will come your way soon. Julianna would say, “Go for it Mom! We can beat CMT this way! I know we can!” That part was from one of the several dreams Ive had about this little wonder! I’ll share them with you as soon as I can! In at least two she told you to “Go for it Mom! We can beat CMT! We can kill it!” I can imagine her saying that! In one dream she said, “so everyone will know about it and no more kids will have to get sick and have NT’s again! People will understand!” When these ways present themselves, Michelle, pray and don’t be afraid to take your daughter’s advice to “GO FOR IT, MOM!” even if they’re out of your comfort zone. No need to sugar coat, no need to hide feelings. Just put it all out there in the stark nakedness in which such an awful and traumatic disease deserves to be seen! That is a way to remember her always and we will. Just listen and when you hear, “GO FOR IT, MOM!” then, go for it and help everyone to meet, know, fall in love with and always remember the beautiful spirit that was, is and will forever be, Julianna!
    As always,
    Prayers are always with you and your family. Much love to you!!!


  14. I wanted to let you know that I think of Julianna each and every day. She brings endless smiles to me as well as tears. My heart still hurts for you.. I’m so happy that you continue to share her pics and videos with us. A truly genuine and beautiful angel.. Blessed are you to be her family. Blessed are we to have gotten to know her through you. She will always be remembered.


  15. I wanted to let you know that I think of Julianna each and every day. She brings me endless smiles as well as tears. Thank you for continuing to share her pics and videos. My heart hurts for you. Julianna is truly a beautiful angel. Blessed are you to have her part of your family. Blessed are we to get to know Julianna through you.


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