Julianna

Dear friends,

Our sweet Julianna went to heaven today. I am stunned and heartbroken, but also thankful. I feel like the luckiest mom in the world, for God somehow entrusted me with this glorious child, and we got almost six years together. I wanted more time, of course, and that’s where the sadness comes in. But she is free now. 

I will have more to say later. For now, this is what is in my heart.

Today, I just want the world to know that there was a girl named Julianna.

She was a bright light. An old and delightful soul.

She loved love, and “everyone except for bad guys.”

She was an unabashed princess and she elevated everyone around her. We were all kings, queens, princes and princesses by association.

She urged us to play, to really focus on just playing. She encouraged us to be our most colorful and fabulous self. (One of her last words to me: “What’s that?” to my gray sweater…)

Her mind was “always going.” It took us to a beautiful world without limits.

Her words were startling. Sometimes I thought that people wouldn’t believe the conversations I recorded. How could a five year old know those things? But if you spent any time with her, you knew.

She fought hard to be here, harder than I’ve seen anyone fight, with a body that was too frail for this world. She was so brave — and I hated that she had to be so brave. This last fight was not to be won by her body. It was tired, and it needed to rest. And when it did, she was comfortable.

Today, she is free. Our sweet Julianna is finally free.

Please do not forget her. She lived, she was real, and she mattered.

I cannot believe that she’s gone. Already, I worry that some of her has faded, and I need to remember all of her. The way her warm little hands felt, the hugs she would give by asking you to drape her arm around your neck. The kisses she blew. They never ran out.

Please remember our precious girl: she was Julianna.

 

Julianna Yuri Snow

25 August 2010 – 14 June 2016

 

Feature photo and photo on right by Audrie LeGault.

301 thoughts on “Julianna

  1. Dear Snow Family,

    Your beautiful Angel is Home now, and Heaven is certainly a more glorious place with her presence. I look forward to meet her when it is my time. I would like to give her a big hug and tell her that she was a very brave girl while she graced us with her presence here on earth. I also would like to thank her for she inspired me greatly with her always positive attitude. Julianna shall not be forgotten.

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    • I grieve with you. You are the most wonderful parents who had an ordeal must people cannot fathom. May you recover enough to enjoy many sunsets with your husband and son.

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  2. I am so incredibly sorry to hear of your loss. Though I know this was the best outcome for Julianna’s frail body, there will always be a hole in your heart until you are reunited in heaven.
    Much love from Pennsylvania.

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  3. Dear mam and dad snow, read your sad story and burst into tears. This little lady has had the sense that not even THE majoriteit of adults have. She is in à better place now, even if this is the last you want To read.

    I wish you all the best and strength.

    Benny de Raad/netherlands

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  4. Deciding to forego pain and suffering and, instead, allow a child to pass on is a decision that, thankfully, very few of us have ever had to make. For those who feel compelled to comment or judge your decision, they do so without knowing what you’re going through.

    Selflessness as a parent, to me, is doing what is best for your child, regardless of our own needs and desires. Putting our own desire to spend more time with our child aside is the most selfless thing we can do.

    My thoughts are with your family.

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  5. Dear Mom & Dad of the angel you just lost!

    While no words can totally give you comfort for this loss but please know that your pain is being shared by thousands of people around the Globe. People, you don’t know. People, you have no connection, no relationship, no bond based on race, religion, color, language, ethnic background etc but one bond that is the strongest bond of all. And that is being part of a human race and with that being part of a human body and when one part hurts, other feel the pain as well. May Allah grant your angel the best place in the Paradise and give you courage and wisdom at this difficult time.. Amen.

    With Prayers and Love from NJ,
    AB

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  6. I’m very sorry for your loss. My daughter died of a similar disease in 2001, after being in hospice for 2 years. It’s been 15 years since my daughters death, and I wish I could say it gets easier, but it doesn’t. I wish I knew Julianna, she sounds awesome. Please reach out to me if you need someone to yell at
    Grady

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  7. Dear Snow Family,

    I am so sorry. My heart broke when I read the news. I have been following your family’s journey through your blog, and I know that Julianna loved and it was surrounded by love. Please know that we won’t forget her.

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  8. Sending you lots of light & love.

    She lived the life she was born to live and she couldnt stay with us for too long.
    She was a star that burned so bright

    Deepest condolences

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  9. Reblogged this on This is [blank] life. and commented:
    Since Julianna came into the spotlight last year, I’ve been following the life of this amazing and vibrant girl through her mother’s words and eyes. I didn’t know her personally, but her life has been an inspiration to what strength and joie de vivre are truly made of. If you can, sit down and read through this blog – read about the life of an almost 6 year old girl who knew how to lead her life better than most of us do and take inspiration. Rest in peace, little one.

    Liked by 1 person

  10. I hope that knowing you treated her like a person capable of letting you know when she was suffering, and deciding to allow her suffering to end, brings you comfort. You are wonderful parents.

    Liked by 1 person

  11. I am so sorry for your loss. I first read about your beautiful daughter, Julianna, last year. I as in awe that a girl her age could be so wise beyond her years. Your family has handled an incredibly difficult situation with such besuty and love. Don’t worry, your daughter will not be forgotten. She will always be an inspiration to many.

    Liked by 1 person

  12. Thinking of you and your family. I did not know Julianna, but am sure to remember her. She sounds like she was such a wonderful young lady with a brilliant mind. You are a strong family to be able to let go and set her free.

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  13. I just read your story for the first time hearing of your daughter’s passing. All I can say is you are a beautiful family and your daughter is a beautiful soul. You will see her again and she is with you even while “God takes care of her”. Stay strong and keep making a difference.

    Liked by 1 person

  14. I am so sorry, words can’t express what an inspiration Julianna was to me and to so many people, and so was your love and devotion as a family to her. She will not be forgotten, your faith (and the knowledge of her own faith, even as a wise but young child) will be your anchor and always remember you will see her again for all eternity with Jesus. I am praying for you and your family as your heart breaks today.

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  15. Julianna,

    We are all blessed to know you and this is not a goodbye but rather I will meet you in heaven someday. I will be honored if Angel Julianna will play with me and share some tea.

    Peace & Love-
    The Albrights

    Liked by 1 person

  16. I am so very, very sorry… I know their are no words to take away the pain. I am proud of your for letting her decide what she wanted. You didn’t make it about your selves or what you wanted. How very, very brave. I am crying for your loss. She was an angel sent here on earth and you shared her with all of us. I can tell she has given you so many gifts. Please know she is still right beside you and will be until you meet again. Thank you for being the parents that she deserved. God will continue to bless you! In Jesus name. Amen!

    Liked by 1 person

  17. I have just this minute learned of your story. I admire your strength and your faith, allowing Julianna to fly as an angel where she will not be limited by her human body. I will pray for you – that your memories will carry you through the days ahead, confident that you did the best you could for your beautiful daughter. Peace.

    Liked by 1 person

  18. Dear Dr. And Mr. Snow: Please accept my deepest condolences. Like many, I first became acquainted with Julianna’s story through CNN. I was struck by her maturity, wisdom, and her charming quirky-ness. And I was profoundly moved by her matter-of-fact acceptance of her situation. I respect deeply the fact that you allowed her to make her own choices, and I am glad you had so much time together; honestly it was more than i anticipated. I truly hope that time was a treasure for your whole family.

    As a retired critical care nurse, I know exactly how intrusive, and painful, advanced life ‘saving’ measures can be. As a nurse, I always supported my patients, and their families, in deciding to forgo such measures. However, I nursed adults. I cannot imagine the strength it must have taken to do make such a choice for your own child, and I admire you both for respecting your daughter’s wishes. CNN reported she passed in your arms, in her Princess room, and you blogged that she was comfortable. I truly hope she was in no pain, and at peace, and that the memories that your family will share will give your hearts peace too. I will never forget this wise, sweet little girl. I think a great many people will remember that Julianna came our way. I think she made an important difference for many children. She was a beautiful light.

    I will pray for G_d to comfort you and bring peace to your hearts. Take care.

    Loren Montespino

    Liked by 2 people

  19. It is people like you, who actually give me hope in humanity. You deserved that darling angel. I’m glad you all had each other. Sending peace and love to you and your entire family. -Sandy

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  20. Oh my goodness…it is amazing to me that I was brought to tears by this news. I don’t know you and you don’t know me. But over the past few months I have been reading your blog and feel like I have formed a connection with you all. I delighted in the stories about Julianna and particularly in her commentary. She had a quick wit and wisdom far beyond her years. I cannot imagine your pain at losing her. But I always like to imagine those that have passed on, with Jesus in their heart, in heaven where everything is perfect. Julianna can now truly be free to do all the things her body wouldn’t allow here on earth. And she gets to do it in the presence of the living God. I’d call her blessed and admit to being a bit jealous of her. My prayers are with you as you grieve your sweet little Julianna. You will never get over this, but with God’s help, you will get through it. May God bless you as you do that.

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  21. I am so sorry. I also blogged on my sons fight at http://www.cjengo.blogspot.com. Like you we chose to bring him home on hospice versus a life in the hospital. On 4/9 at 7 years, 7 months, and 7 days old he drew his last breath. It’s the hardest thing imaginable but I know our children are no longer in pain. There is a Facebook forum called TCF – Loss of a child, which has helped me. I am sorry you have to endure this.

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  22. I have two kids, and like mom, I understand how hard and difficult is your lost, you are really brave to respect your daughter desition, I’m really sorry for your lost, my prayers for your family, and your sweet angel.

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  23. Dear Snow Family,
    We will not forget your beautiful Juliana or her amazing strength, spirit and sense of humor. We won’t forget how she lived or how she loved, fully, without reservation and with a heart wide open. We will not forget her wisdom that was beyond her years. We will not forget her love of her brother, her family or her princess room- of all things magical. We will not forget her quick wit, her huge imagination or her powerful conversations. Because you shared her story with every single one of us, we will not forget. Your love as parents , your unconditional support, tireless fight, advocacy, costume changes, endless hours playing… all of it- it will not be forgotten. Both of you are amazing role models. I wish all parents could see the unique beauty each child holds the way you saw it, honored it, and cultivated it in Juliana. She is a bright light and we are so, so sorry for your loss. Thank you for sharing Juliana with us. Though you, we knew her, loved her, celebrated with her, and prayed when things turned rough. Our prayers are now for comfort for breaking hearts and peace in knowing you did amazing work to raise money and awareness. Thank you for sharing, for your bravery and courage. Our hearts are with you at this sad time. We will not forget your sweet, smart daughter, Juliana.

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  24. I’m so sorry for how your hearts are hurting. I can’t even begin to imagine. As a parent myself, I weep for you and all parents who lose their little ones too soon. Your little angel has touched the hearts of millions of people, and she will always be remembered. You are amazing parents for giving her the choice of how she wanted to depart for heaven. Your Princess is free now, running and playing. Sending so much love from Alberta, Canada.

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  25. I hope you feel the love, light, prayers and warmth we are sending your way. God is carrying you through this difficult time, and we are all thinking of you. Your selfless and wise acts as parents gave her control of her own life. Sweet angel Julianna will always be an inspiration and has touched so many. She will never be forgotten.

    “So believe that she mattered, and believe that she always will. She will always be with you; she’ll be part of the days you’ve yet to fill. She will live in your bounty. She will live as you carry on your life. So carry on, full of hope. She’ll be there.”

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  26. Dr. Moon,

    I am so sorry for your loss. I can’t come close to understanding what you and your family are going through. I can tell you that Julianna’s story touched me profoundly. What a bright and sweet little girl. The conversations I read that you had with her, I cannot imagine. There’s no doubt in my mind that your Julianna is in a place now where a peaceful and kind soul like hers will have the life it deserves. This world was undoubtedly unfair and I hope you take some comfort in the fact that Heaven will be kinder, and that you will one day join her.

    God bless you and your family, and thank you for sharing this story with the world. I myself am a better person for having known Julianna.

    Nick

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  27. Dear Snow Family,
    My heart is heavy and eyes are wet. I cant stop thinking about her. When I will go home tonight, I will conduct a special prayer for her with my family. Please accept my sincere condolences.

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  28. I won’t forget her… I remember the article I read in CNN last year about your previous little girl. My thought was….”My goodness she is so brave and courageous, and how she doesn’t deserve these tests that life three ar her. You are all so lucky to have had her your life. God bless her and your whole family….

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  29. WOW I sat here an read your blog. Heaven gained a Beautiful angel. My 6 year old has a mild form on CMT. Your words inspire me, thank you for sharing your princes and your love and pain with us.

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  30. I am so saddened by this news. I have been reading your blog for the past few months and have delighted in your stories about Julianna and her sweet and spunky spirit.

    I want you to know that I will not forget Julianna. I will keep Julianna’s Adventures on my bookshelf, and every time I look at it I will think about your brave, upbeat, imaginative, loving, and HILARIOUS daughter. I will try to live my life with the joy and light Julianna lived hers. I will try to bring more color (especially pink!) into this world.

    I also will not forget you, your husband, your son, Julianna’s grandparents, her nurses, her classmates–all the people you wrote about who loved Julianna and were loved by her. I can’t imagine how you are feeling. I am so deeply sorry for your loss.

    I know you plan to write more, but I wanted to thank you for your beautiful, reflective, and heartfelt posts. I have learned from, laughed because, cried because, and been inspired by the things you have shared with us.

    Finally, thank you for sharing Julianna with us. I wish you all the peace, comfort, and love in the world.

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  31. My heart breaks for you and your husband. I am so very sad. Thank you for sharing just that little bit of Juliana with us. I will continue to pray for your family.

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  32. I know that it is a very hard decision to make. You want your child to survive but as the quality of their life deminishes it hurts to see their pain and suffering. Sometimes you have to let go because you can’t stand their pain. It takes a lot of courage as a parent to make that decision. So proud of these parents to let her go…end her suffering. You won’t get to hold her but know that she is in a much better place.

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  33. I offer my sincere sympathy. I am truly so, so sorry for your loss and for the deep pain that loss brings. She is alive with Jesus. She is with Christ. When you are close to Christ, you are closest to her. You will never stop loving her, and the pain of missing her will remain in this life. But, one day. Oh, One Glorious Day, it will be made well. Because of Christ’s saving work, the separation will end one day. You will be reunited, and your heart will be healed.

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  34. Bless Julianna and your whole, wonderful family. You all have shown unbelievable courage and mindfulness in the face of impossible adversity, and you have been kind enough to share it with others. If I have to face something that difficult, I will feel proud if I can handle it even half as well as you.

    I am not a religious person and have often struggled to understand faith, but your story has genuinely helped me appreciate its function and value.

    Thank you, and I wish you comfort and love as you grieve.

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  35. My heart is breaking for your family, and for us too. Julianna will be a bright light in heaven, whole and free again. We will never forget Julianna or your family. I hope you’ll be able to stay in touch with us and let us know that you are alright. Our love and thoughts to your precious family.

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  36. I only met your beautiful little girl once but I will forever remember her. She was beautiful inside and out. I am so very sorry for your loss and pray that you find comfort in her memory and in the love of those around you during this difficult time.

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  37. I sobbed when I read your latest post. My heart aches for your family. Heaven received a spunky and brave princess angel. Thank you for sharing your beautiful Julianna with us. Your blog is so special and I have loved reading along–I adore her witty comments and anecdotes. Sending thoughts and prayers from Colorado.

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  38. In the news learned about Julianna today and have spent the last couple of hours reading through the blog about your family. I am very moved by your sharing her life and your family’s story. Thank you. I will take some of Julianna’s wisdom with me. I’m truly sorry for your struggle that life has dealt your family. I marvel at Julianna’s grace and your strength. Going to look for the children’s book and maybe can give as a present in future. My respect to you. I never was able to have children and can only imagine a mother’s heart from knowing my own mother’s love for me. Wishing you peace and continued love, which I know surrounds you. Again, thank you for sharing your story and helping to spread the knowledge about this disease.

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  39. I know there are no words I can place here that have probably not already been said. I know there are no words I can say that offer comfort enough or could express the grief I have over hearing this! I never met your little “old” baby girl, but I loved her with all my heart! In such a short time you helped her give so much to this world and as I’ve said she has managed to offer more in such a short time than many adults ever do! She has taught me well and I will never forget the lessons I learned from Mermaid Princess Super Heroine Julianna! She will remain dear to so many for a very long time and will now be all the things she ever wanted to be and couldn’t truly be here on this limited planet, in this imperfect world in an imperfect body that once trapped a glorious soul! She has always been a princess, that was a given (after all her Father in heaven is a king) and now, she can fly like a super hero, she can swim like a mermaid, and anything else her sweet soul desires, including tea parties! She is home now and I look forward to meeting her one day when I get there and going for a mermaid swim together!
    With a broken heart and sadness I cannot describe, I ask that you remain in our pod and on my FB page. Once family, always family! If I can bring more attention to CMT here in GA let me know how. I can offer that at least. Thank you for letting us share in bringing a hint of happiness to her through our mer family! We are far richer for having had that chance! You are dear and loved and held by so many through your grief as you struggle to find your new normal, because one never gets over a parting, however temporary, and even though we know we’ll be with her longer than we were without her one day, it leaves little comfort for the here and now!
    You will all continue to be in my prayers! Especially now, I’ll pray for strength, peace and grace to envelope all of you and that you feel God’s comforting arms through those of us who will continue loving you all and forever love Julianna. Love never dies! May you hear Julianna laughing in your dreams with out needing her CPAP and may your minds be filled with images of her running and singing without difficulty! May your hearts always know that she has changed so many lives for the better and forever!
    Al my love to you all, Michelle, Steve and Alex!
    All my love to you, Julianna! thank you for being!
    With great sadness and heartfelt tears my sincerest condolences are not enough to express what I feel hearing the news!
    In my heart forever,
    Your Mermaid Lyric –
    Christine. M.V. Klimshuk

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  40. My thoughts and prayers are with you all. There is a special place in Heaven for your beautiful Julianna.

    Peace be with you.

    Your Neighbor Maurine in Washougal

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  41. Dear Snow Family,

    My sincere condolences on the passing of Julianna. She however is not dead, she is alive with Jesus in heaven now. Our faith assures us that we will live forever with Him if we believe in Him. You will surely miss her now, but have the awesome hope that this goodbye is not forever but just a little time until you are reunited once again. God Bless you and the strength of Julianna and of yourselves is truly admirable.

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  42. I’m not really sure what to say but I feel compelled to show my support to you and what you have been through. I’m so sorry and I wish nothing more than peace to you all.

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  43. She was the bravest little girl I have ever known and wise beyond her years. You raised a wonderful girl and now heaven has another beautiful angel.

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  44. I’m father of a 4-year old girl. She’s my princess. Can’t imagine the pain you and your husban is suffering. Can’t help crying while watching your story. My condolence is with you. Little Julianna wants you to live happily and bravely just as she did.

    Michal from China.

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  45. What we see and feel here on this earth is temporal. Ours is the kingdom of God that is eternal. I could already picture Julianna perfectly beautiful and healthy with not a single blemish. And she running free, laughing and full of joy in heaven.

    My condolences to you and your family. May the Lord keep you and send angels to comfort you in these times. God loves you just as he loves your baby girl.

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