I am Truly Living

If Julianna or our story has inspired you to do something, tell us about it! Leave a comment and help inspire others. Make Julianna proud.

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Aug 2015

94 thoughts on “I am Truly Living

  1. Here in the Netherlands I have read also about Julianna. I thought it was special when you aksed what she would want if she should go to the hospital again. He choice sound special to me as well. Today I read that Julianna went home. I am sad that you had to let her go. I wish you strengt, love and al you need to go on.

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  2. Sleep in peace and comfort, beautiful Princess. You have given, and will always give, your family and this world so much love and strength. All my thoughts go your way.

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  3. There are no words for the pain i feel right now. I only just found out about this 20 minutes ago and i am crying in agonizing tears. I never met her, I didn’t know her but my God has she touched me deeply. So strong and brave and now shes gone. I am so beyond words emotions anything, so sorry for your loss. You’ll see her in heaven one day and she will have rooms full of flowers she has picked for you until you get there. I will never forget her. Hopefully, in heaven, ill get to meet her too one day,

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  4. I never write comments but the beautiful stories of sweet, sassy Julianna compelled me to. How special and utterly hilarious Julianna was! How clearly so well-loved she is by her family. Your words describing life with Julianna so vividly illustrate that she was far, far bigger and bolder than any stupid disease. I never had the pleasure of meeting her, but I am thinking of you and her tonight and know I will never forget her story. Peace to her and to you. ❤

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  5. You have gone, I burst into tears. What a lovely, beautiful, clever girl…… There is no doubt, you are now in the paradise with happy life, waiting for your mom, that would be a long and happy waiting, no pain, you can freely running,smile, and make many good friends… Beautiful princess, wish you happiness from now on……

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  6. I stumbled across your Instagram tonight-
    I saw the news you posted, then read every single blog entry. I am a mother and I know the love we have for our babies- it’s deep. I promise to always remember little Juliana. She mattered -and was so blessed to be truly loved- every photo showed your love in action. Thank you for sharing your story We are complete strangers and yet, I will always remember her, I promise XO

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  7. I am so sorry for your loss. I loved reading about Princess Juliana and her silly stories . Every time I was in tears. Knowing she would never get better . Ya’ll made her life full of many adventures and excitement. I’m sad to hear she missed her tea party with her school friends. But I know she had the ultimate tea party ever with her Heavenly Father. She’s running ,playing, picking flowers, being the Princess in charge. One day my husband and I will meet her. She will know how many prayers we said for her and how many tears . If I had ever had a daughter, I would want her to be like Juliana. That precious little face , smile. How lucky you were that God gave you Juliana. Even if for such a short time, she had a awesome life. Our prayers for you and your family . Prayers from Virginia.

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  8. this is truly amazing this blog has made me appreciate all the things I have in life, it made me understand the reality of living with a disease because before I never really knew what it was like. RIP Juliana

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  9. I offer my deepest sympathy for your loss. Praying that our God in heaven sends you comfort and peace in knowing that He now holds our precious little Julianna in His presence! He is Jehovah Jireh who provides and also our Jehovah Nissi which is our banner that goes before us in all things–He is there with you now, with you and your family, ready to meet your needs, right where you are. Julianna’s story has touched me more than I can express to you, I will never forget her, I will use her inspiration to continue to serve others around me with utmost dedication and loving-kindness (I am a registered nurse but had recently been touched by a serious illness myself that left me in a slump). I know that someday in heaven I will be honored to meet this sweet, precious, intelligent little girl that has lived more life in her 5 years than some of us live in a lifetime. May God bless you always! In love!

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  10. Julianna has imprinted her smile on our hearts forever. The love and energy she exuded was contagious. Her positive spirit and tenacious appetite to fight and live will always be a role model in our family. We were so blessed to meet Julianna and allow her to imprint these traits on our lives. She is a role model, and her impact will live on through all she touched in person and across the digital world. Blessings to your family and Julianna.

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  11. julianna u moved me baby girl…..you will stay in my heart forever fighter….loads of love to u from this unknown buddy…my eyes are filled with tears writing this….

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  12. Mom and Dad your family is an amazing example and inspiring of beliving in a Lord that love us more then we can understand, the princess is now in a beautiful place, where there is no pain, I pray for you to recieve the peace from God for not having the company of Julian for now but she is waiting for you in the heaven

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  13. There are beautiful, courageous souls who touch lives in ways that make the world a better place. Julianna was one of those souls. The strength and courage you and your family have shown is also a testament to how beautiful, wonderful, and inspirational your family is.

    I am so grateful you have shared Julianna’s life; so many touching moments and so many painful moments. I can’t thank you and Julianna enough for making me realize that the only superpower that matters is Love, every single step is a moment to be grateful for, and to hold on tight to the sweet and good. Everyday is a gift I’m thankful for the opportunity to unwrap.

    You are in my thoughts, and I raise a cup of tea in celebration of the life of the truly inspiring and incredible Juilanna. Julianna’s body was fragile, but her spirit lives on with strength, courage and love. Thank you for sharing Juilanna with us all– we are forever changed for the better.

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  14. What a magnificent and admirable girl with these intense and communicative eyes… A destiny that touched my heart, made me speechless and showed me what´s really the biggest gift the world has ever received.
    You have ever been and remain an outstanding family fighting for the right to love and give CMT-patients a face and voice. I rediscovered a lot due to your blog – another raised cup for Julianna and you.
    I´m looking forward to meet you and her one day together, maybe having a cup of tea and learning all of you to know at another place.

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  15. im an atheist(not that it matters here) and i just wanted to say that, theres nothing more that could have been done to significantly improve her life, letting her die at home was the right thing

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  16. Hi Michelle

    I just learned of the passing of your angel thru CNN tonight. I am known for not crying but I could not help but feeling tears coming down my cheeks . I am happy that Julianna doesn’t have to feel pain any more. I myself have medical conditions I have been battling for years. We lost our dog to an acute cancer early this year. He doesn’t feel pain any longer and we are grateful for it. Your story and Julianna inspired so many. Thank you and rest in peace Julianna

    Sent from my iPhone

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  17. No words to say.. but I can feel it. As we believe, Juliana went to heaven and with her heavenly father. She is free now.. no pain..no restless..no tired.. no breathless.. bcoz our father in heaven holding her. she is in His lap.. she is happy she is very joyfull she is relax after all her fighting over the years… Glory to God for sent to you this wonderful Angel… Love you Julianna… May God bless and strengthen you all to overcome this difficult time…

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  18. I am writing from Massachusetts with a full heart for your family. Blessings to Juliana’s courageous family who have taken tragic pain and pumped it full of love, faith, integrity and honor. You are God in human form.

    You have asked about a story of inspiration. I have been at the beginning stages of committing to volunteer as a visiting mom to new mothers overwhelmed by the experience. There’s no room for dabblers or do-gooders: it is about showing up, week in and week out, committing for at least a year, and forging a bond with a person in her vulnerability as she realizes first hand what parenting involves. Parents know how much fear grows in us once we become responsible for a child.

    Juliana has inspired me to make sure that this commitment happens. I offer my supportive shoulder and understanding heart to a new mom as she enters her first year as a parent.

    Great Love.

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  19. No words can describe how sad I feel for your loss. I am sure Julianna is proud to have parents like you and likewise you proud to have a daughter like her. Julianna has indeed inspired myself to appreciate the most simplest things in life and appreciate that “love is a superpower” indeed. Rest in peace Julianna

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  20. I stumbled upon your blog this week and couldn’t stop reading it. I’m so sorry for your family’s loss. It’s hard to articulate a hug via a stranger over the web, but that’s what I want to give you after reading J’s journey. It’s clear that you have been a wonderful Mom to J. I don’t think we, as moms, don’t hear that enough or let it resonate. But you should be proud of the loving home your family created for her and enabling her to choose her own path. I can’t imagine the pain you’re going through right now. I hope it brings some small comfort to know strangers across the world are praying for you and your family.

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  21. I had started following your blog in January of this year and it always warmed my heart to see the lessons that a five year old could teach me. Julianna taught us to enjoy life, to see the adventures and wonder even in our own room and I am truly sad to read that she is gone. I am happy to know that she is free of pain and is in a better place. Julianna was lucky to have a wonderful family and though the pain much be great I really hope you know how many lives she has touched.

    Many nights I would read your blog and smile with tears as my wanted to burst with love for this fantastic girl.

    God obviously had bigger plans for this wonderful girl in heaven and I am sure she is being sent on grand adventures.

    Your have my prayers, sympathies and love and I wish to send you nothing but strength to you and your family.

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  22. If there was one thing that I have seen so far in my life that proves the existence of God, it is your daughter, Julianna. Thank you for sharing her story and her life with us.

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  23. I am so touched by this story. Read your whole blog all the way here in Hawaii. Julianna was truly an amazing, beautiful child. I have been through a roller coaster of emotions/feelings by reading this: laughter (she had some pretty awesome, witty responses in conversations!), love, sadness, happiness, all of the above! You both are wonderful parents, and I cannot imagine the pain your are going through. Please know that Hawaii is with you!

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  24. To: Our Julianna- (The One the World Got to Know)
    From: A follower of Michelle Moons’ blogs
    Date: 6/24/16

    Princess Julianna
    A True Princess in Every Sense of the Word by Her Character, Words, Actions and Deeds

    To “The Cast of Characters” as Michelle so lovingly preferred to them Michelle, Steve, Alex, Homie, Grandpa and Grandma and all of your extended Families. I offer you my sincere condolences.

    I have fought the good fight, I have finished the race, and I have remained faithful.
    (2 Timothy 4:7) NLT

    Precious Princess Julianna,
    I’ve gotten up every morning for the last 8 months and 14 days with you the first and last thing on my mind before I’d go to sleep. I’ve looked into your beautiful eyes every day; and through your Mother caught an intimate glimpse into your daily life.

    (The WHY)
    Why she told your story to the world, I completely understand. Because you are and forever will be an “Extraordinary Person” One of A Kind, with No Equal”. You are what I told my own children, I hoped that they would meet one day in their journey through life. If God gave them the Honor and Privilege of having the opportunity to run into “such Individuals” during their lifetimes. When these individual are here with us they don’t even recognize their value or their importance. They are just naturally being themselves; but their Character, Actions, Words and Deeds are so phenomenal that they leave such an impact on your life; and an imprint in the deepest recesses of your heart. Such an impact and imprint that can never be erased, nor forgotten. My memory of Julianna will NEVER FADE.

    (The HOW)
    How your Mother was able to keep writing the blog entries through all your family was going through with her “eyes of love” with her viewpoint, her perspective and such crystal clear transparency, I will never know this side of Heaven. BUT, I shun to think about, if she had never picked up a pen and began writing; and I missed the opportunity to have known you.

    The natural man does not accept the things that come from the Spirit of God. For they are foolishness to him, and he cannot understand them, because they are spiritually discerned. (1 Cor. 2:14)

    (The WHAT)
    For ALL of us that believe in Jesus Christ, Heaven is a very real place and ALL of us have the highest hope of arriving there one day. It is the essential essence and backbone of our faith. For people who do not KNOW Jesus Christ the things of God sound absolutely crazy. I’m praying earnestly (even still) that Your Mother, Steve and Alex are surrounding by those who dearly love them during this initial time of your Home going. I’m praying that they can tangibly sense our presence, surrounding them and uplifting them with the greatest admiration, gratitude and utmost LOVE during this time. I will be eternally grateful to your family ALWAYS for sharing YOU with us. I’m so thankful to God to have been given the opportunity “to walk along with your family” prior to your transition to Heaven, PRECIOUS SNOW FAMILY, YOU WERE NOT ALONE!

    Then, when our dying bodies have been transformed into bodies that will never die, this Scripture will be fulfilled: “Death is swallowed up in victory. 1 Corinthians 15:54 NLT (The Fear of Dying and Death Has No Sting.)

    (Lastly)
    If ever there was someone who fought the good fight and kept the faith, (until her very last minute on earth) it was our Princess Julianna. I know now, Michelle, Steve and Family, you are just going through the motions and trying to process the events of the last few days; and right now, seems extremely surreal. But one day (it may be a month or years from now), you will, look back through ALL your blogs from the very 1st blog you wrote to your last, and all the followers’ comments. I’m praying that is when, it will finally “sink in”, and you will come to know the “Full Impact” that Julianna had upon the World. I’m praying that every ounce of sadness will be replaced in your spirit with “overwhelming gratitude” that God allowed you to be faithful enough to entrust you with, you stated it, quite eloquently, “a glorious”, child such as Julianna. Truly one of the brightest lights I have ever known has transitioned to heaven; put still here are 1,000’s of new bright lights that were impacted by Julianna’s Life.

    Eternally yours and FOREVER grateful to Princess Julianna and the Snow Family,
    Lorna Redd/California

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  25. ♥I’m so sorry for your loss:(. I wish that Julianna was alive. I’m sure she will be In heaven, she was a sweet and amazing girl♥Princess Julianna will be forever missed and forever loved♥My eyes are full of tears as I’m writing this♥Love and support to you and all of your family♥

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  26. Well…i got one for you. My entire life changed. I was sad about J so I was crying, and my work thought I was nuts and fired me, no joke. In retrospect, I am glad for the change of work anyway, I think it will be something positive. I started a website, Julianna.cc – and now I will have more time to work on it! I am sure I can get unemployment insurance benefits, due to being fired without good cause. Also, Julianna inspired me to want to help, during my time not working I am going to give time and energy to make-a-wish

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      • Yes, it is okay. I followed the story for a long time, and it really broke my heart, made me angry at the universe. It was very warm out, and I was dehydrated. Sadness hit me like a ton of bricks. That is unusual, because I saw so much loss with my own eyes. From the jet accident in Kunsan where the jet on the ground was on the runway and an incoming dumped jet (pilot bailed) scraped the wingtip so the jet on the ground caught on fire… It was awfu i was in the first vehicle that came to the jet..the pilot was burned and in the praying mantis position. Or the many other events where loss was seen first hand. So i usually have a very thick skin about loss…but your Julianna just really got to me. The job- to heck with them. No worries at all, please realize I didn’t post that for sympathy, I posted it as an interesting and humor story. I am currently in a 25 hour bus trip to go home, and after the bus trip is over I will be happy lol. But yeah, I have an anger about J having to go through that… And I am angry that if there is no afterlife then all the lost ones are gone. No worries , but thank you so much for the response. Julianna.cc is going to be a healing place, a learning place. At least I know that you know about it 🙂 Well sending the utmost respect and love to your family. Your family is not alone! ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

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      • I believe that Julianna is happy and running free and mischievous. Truly, in a better place. She believed in heaven too. She would have said “what the heck??” at your firing story. I hope heaven becomes real to you, just as Julianna was real to you. Be kind to yourself. Love.

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  27. When I heard about Julianna’s passing, I was so full of inexplicable grief. After all, I don’t know any of you personally and yet having read your blog and gotten to know Julianna that way, it really hit me hard to hear that she’s gone.

    Thank you for sharing her with the world. Reading about her has made me even more grateful for the life I have and even more willing to try to overcome obstacles and follow my dreams. I wish Julianna could have seen Tokyo. Every day when I’m out, grateful to be here in this wonderful city, I think about her and I hope she’s having just as many wonderful adventures wherever she is. I don’t think she’s someone I could ever forget, and there are going to be many people around the world who are going to remember her always.

    My everyday wardrobe is all black and I’ve been accused of being a bit of a goth, but in honor of Juilanna I’ll add some color or some sparkle at times. After all, I don’t want her to disapprove of my fashion choices!

    Thank you again for sharing her life with us. Honestly, as you say, sharing grief is a gift, because I’d rather know about your special daughter and cry, rather than never have known about her. All my best wishes to you and your family. And I know I’m a stranger and you have plenty of people to talk to, but if there’s any way that talking to a stranger can help with the grief, I’m here to listen. I know when I lost someone extremely special to me two years ago, sometimes you just need to talk, and everyone around you is exhausted, but keeping silent just adds to the pain.

    Again, all my best wishes!

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  28. I am from Bhopal India. I read Julianna’s story. I am very much moved by the pain undergone by the little girl. She is sweet & brave. She has gone o the place from where she came-Heaven to rest in peace. She came to us to delight us sometime and gone back and to that extent we are lucky to have her in the middle of us. May God give you enough strength in this hour of grief. And I am sure the beautiful memories of Julianna will keep us smile rest of our life

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  29. Monumental. Julianna’s life has inspired me to be a better mom, to make a moment, and spend more time with my children. I read her book to my 3 year old daughter. She loves talking about your Julianna and searching for her videos on youtube. Presley (my 3 year old) doesn’t quite comprehend that Julianna is in Heaven, just yet. So she will sometimes ask to go visit Julianna’s house so that she can meet her. We pray each night for Julianna and hope to meet her one day, in God’s time.

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  30. I stumbled upon your blog today and have been reading the posts. I’m humbled by your strength, courage and joy. Julianna, you’ve brought a beautiful part of the Kingdom to me today and reminded me of the eternal hope of restoration and redemption. I can only pray I am able to raise up my children with as much grace and perspective as your own mother has raised you. Thank you.

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