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. There’s no doubt in my mind that your Julianna has had more of a positive impact on this world in her brief lifetime than virtually everyone who has lived well into retirement. It was so brave of you and your family to allow the public into your lives at such an emotionally difficult time, but by doing so you’ve given Julianna the ability to touch so many more lives. Your daughter’s time was too short here, but it’s clear that you gave her the gift of knowing that she is loved unconditionally, and that she matters. Her youthful innocence and sense of wonder will be with her forever.

    I only saw your family’s story for the first time yesterday evening, and I was moved to tears by it…repeatedly. It’s the first time that I’ve cried like that in years, but my daughter is only a few months younger than Julianna (in addition to looking a lot alike, and having very similar personalities as far as I can see) so when I see her I feel like I’m looking at my own child – and I just cannot imagine the emotions that your family must be going through right now.

    Your story has caused a reawakening for me as a parent (and as a human being) – there’s so much that I’ve taken for granted, and as days turn into months, and months turn into years, I’ve fallen into the trap of thinking that the meaningless things are important, and in-turn have taken what is really important for granted. I can promise you that Julianna won’t be forgotten, I’m ordering her book to read with my own daughter (she’ll LOVE it), and when the time is right I’ll make sure that she knows who Julianna is. And I will be back here often, to remind myself of what love and bravery are really all about.

    Jason

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    • Like Jason, I read the story on cnn this morning and was tearing up uncontrollably … in the office. And then, in the evening, I read the update that Julianna passed away. I have two kids and I’ve realized that every time I even dream of something happening to them, I shudder and cry and I’m not normally the emotional type. Shortly after reading this, I read an article about Bhutan and how the people there think about death everyday to make them more aware of the present and live every moment knowing that it might be the last. Your family has been living this way for a while and I’m sure it has helped you appreciate every waking moment with your daughter. Thank you for your blog and the conversations you’ve posted – Juliana is an amazing child. While I’m not sure what I would have done in your situation (no one can ever profess to know), I’m touched by your experiences.

      Hope you find the strength and inner peace to continue.

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    • My heart felt condolences to you and your family. Julianne is at peace now and she is in the arms of our sweet Jesus, praise the Lord! She will always be remembered. Thank you so much for sharing her life with us.

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  2. Dear Snow Family,
    thank you for letting us share in the beauty and wonder that was (and is! She lives in heaven today!) Julianna’s life here on earth. I am stunned and heartbroken, and tears are coming freely. Julianna, we love you so much – and I thank God that I got to know you a little bit. I will try to live up to your fabulous expectations of life and personhood. What a wonderful and amazing little human. love, love, love,
    Lily

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  3. Oh sweet Julianna is free! She can run now! She can run and feel the grass under her feet and take glorious breathes of fresh air! She can throw her hands up and run, and feel the wind blowing through her hair! She is smiling and running and as happy as she always was, only now she is looking down from above! I will never understand the way the world works sometimes, but I understand the lessons Julianna taught daily. Thank you for sharing her life and love. I pray that your heart will soon feel peace…

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  4. To The Snow family, My prayers go out to your family, especially your son who lost his little sister. Thank you for sharing Julianna with all of us. What a beautiful Angel from God, her story will touch so many people, what a courageous little girl. As a Pediatric Oncology Nurse, I understand why you allowed Julianna to choose her princess room to pass away over a cold hospital room, I salute you for allowing her to choose. My sister’s little boy passed at home in her arms 2 days before Christmas. I know God brought her and her family through that difficult time. He is Faithful, and He will do the same for your family. Now Stephen has a new friend to play with in Heaven! Julianna and Stephen are pain free, with no more feeding tubes, no more oxygen and Jesus is watching over them. Jesus Loves the Little Children! God Bless you

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  5. God bless your family, and hug you through your grief. Julianna’s story is a beautiful example of Mark 10:14 – “He said to them, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these.

    She accpeted God into her heart with the purest faith – that of a child. I love that God so visibly gave you, as her parents, what you needed when you needed it. You know what I’m talking about. That peace through suffering only God can do. That knowledge you receive right when you needed it. That comfort of knowing God is handling every moment, thought and word.

    I know your family will be an inspiration for many to wonder, seek, and learn about God, Jesus and the Holy Spirit. Your faith shone when you presented Julianna’s options to her — faith in God, and faith in Julianna — knowing she understood Heaven and living with God, and you letting God have her.

    Love and prayers,
    Brenda

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  6. I will always remember your little girl and keep her story with me to share about CMT. Your courage and love is amazing. Thank you for sharing your precious girl to the world. We mourn with you.

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  7. I am so very sorry. I know there can be no greater pain than what you are going through right now.
    As a fellow physician mom with a child just one year younger than your sweet, wise Julianna, I want you to know that your courage, conviction, and openness is moving and inspiring. You and your family will be in my thoughts and prayers for many months to come. Love and big hugs from Arcadia, California,

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  8. Oh Michelle 😦
    I am so sorry.
    Thank you for sharing Julianna’s life with us. I don’t even remember how I came upon your blog now, but I have read every post since. I knew this day would probably come, but it was still a shock. I can’t imagine your pain.
    Love and prayers with you from Australia xox

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  9. Hello,

    ((((( I send you my heart. )))))

    When your little girl was a year old, my little girl was 8 (almost nine) … and she went to heaven, too. My baby girl had Batten’s Disease.

    I know of your love and laughter, and sheer daily dedication, and the normalcy you found in the daily rhythm of life with a kiddo with a terminal illness.

    Sometimes I would look up and realize that we were in our own world, our lives were different than the rest of the world, though in so many ways so very much the same. But different.

    I was so in tune with her!

    And then?

    I had the impression that she glanced back once and gave me a wave as she tore off for heaven, excited about her new adventure. She would be all right.

    And me?

    I’m okay. I love up my other wonderful kiddos, my husband and my cats, and I’ve fallen in love with preschoolers and will be teaching soon. I have a special love for kiddos with disabilities, especially kiddos like mine. I’m finding ways to throw myself into work that will advocate for kids and parents. I was glad to read that you will have some such work yourself. It’s healing.

    There are no rules about grieving, but I heartily recommend counseling. Just a little objective feedback to guide you as you move forward. Maybe it was because I was always so “strong” when she was alive and progressing in her illness. Maybe it was because I was caring for her 24/7. It was hard to adjust to her absence.

    So, I say all that not as a nosy busybody, only as one mom to another in this journey called life. I send you my heart for love of you as Julianna’s mom in totality then and now and in the days to come. Just my heart, just my love, one mom to another.

    Thank you for sharing Julianna with me in your writing.

    Lisa Barker

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    • I’m commenting on this just to second the bit abt seeking counselling of you need to.

      Much love Mish, I’m seeing various/many suggestions encouraging you to take care of your own well-being – I believe I speak for all/most that we are sharing based on our own experiences. Do what suits you & feel free to chuck the idea aside if it doesn’t. I believe I speak for most/all when I say that at the heart of these, lies the desire to see you/Steve coping well – that you both may help Alex cope too.

      Every time I comment I feel like my words are stale and old because I’m basically repeating the same thing .. which is this – huge hugs & if I could personally hug you, I really would! Meanwhile – please do take good care of yourselves (Mish+Steve), so you can care for Alex too. xxx

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  10. Julianna, I have been following your story for a while.
    Your devoted and loving mother shared your story with the world- your heart of gold will be remembered by so many people. Your sweet, beautiful spirit will not be forgotten.
    As you look down from heaven, know you’re an inspiration.
    You are warmth, love, and joy.
    You are courage and strength.
    You embody so much of what is positive in a world that can be so bleak.
    Your mark will not fade from this world, sweet Julianna.

    Rest in peace. ❤

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  11. I’m so so sorry her time with this earthly world is over. Thank you for sharing J with us. What a gift. She remains a precious gift to me and I won’t forget her amazing life, her astonishing soul. Prayers are with her family and all with broken hearts this day.

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  12. Julianna is a true proof of God’s love and light. We can’t see angels, but Julianna was definetely one of them sent to us by God. Ive been following her story since October, thank you, Michelle, for sharing it with us and let us knew what an amazing person this little girl was, so brave, so wise, so bright and funny. Im very grateful for knowing her. It touched me very deeply and my words are not enough to express my condolences to your family and its a very difficult to say this final Good Bye to Julianna. She is a shiny star and she will never be forgotten. There are not enough words to express my feelings now. My heart and prayers are with you. God bless your family, please be strong, curious Julianna is watching you from Heaven. She is and she’ll always be a True Princess.

    With love from Russia.

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  13. I am heartbroken for your loss. I prayed many times that God would heal Julianna and strengthen her limbs so that she could walk again; however that was not His will. She is now home with her heavenly Father. The faith of this small child is a lesson to us all. She accomplished more in the last two years or so than most will accomplish in a lifetime. Wisdom and understanding, love and patient, who could deny her giftedness in these areas? By her example, I am reminded to praise God in joy and in sorrow, that He would allow us the privilege of seeing His beauty, if but for a short time, in the life of sweet Julianna. An angel on earth for nearly 6 years and now for all eternity. God bless you and your family, you are greatly loved! — Clay

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  14. First of all, my deep and sincere condolences to you and your family. I got to your blog through a Dutch news report this morning and started reading. The love shining through in all the posts really is beautiful, like your little angel.

    Second, I’d like to share a poem I’ve seen quoted a couple of times, but I’m not sure I’ve ever seen it when I got the feeling it ‘fit’ so well. Maybe you already know it, maybe you never even read this message.

    God looked around his garden
    And found an empty place.
    He then looked down upon the earth,
    And saw your tired face.

    He put His arms around you
    And lifted you to rest.
    God’s garden must be beautiful,
    He always takes the best.

    He knew that you were suffering,
    He knew that you were in pain.
    He knew that you would never
    Get well on earth again.

    He saw the road was getting rough
    And the hills were hard to climb.
    So He closed your weary eyelids
    And whispered “Peace be thine.”

    It broke our hearts to lose you
    But you did not go alone…
    For part of us went with you
    The day God called you home.

    Lastly, and least importantly, I’ve read the posts in which you mentioned getting negative comments on ‘allowing’ your daughter to choose to not go through additional hospital visits. The news site that I came from is known to have one of the most vile and judgemental commenting bases of the country, and I have not read a single post that didn’t commend you for respecting and honoring your daughters wishes.

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  15. To the snow family, Thanks for sharing this touching, beautiful and inspiring story. I will always remember little princess Juliana. She lived in the purest spirit and touched so many souls. Now she is free. I hope God will help your family through this pain. Sending love and prayers from Seattle.

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  16. Dearest loved ones of Julianna’s,
    I am so saddened at this news. It’s like a magical soul fairy has left our realm. She was indeed magical and I thank you for sharing her with us through this site.

    I hope you can hold on to all the joy and wonder and giggles and love she brought into this world.
    I will not forget her — or your family. You are all amazing.
    With love from Oakland.

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  17. rest in peace for a little while darling…in between running and laughing and playing all those games you were not well enough to play in this world. Everything is now possible for you …no rain..just sunshine bathing this beautiful princess in its glow.

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  18. I am a “going on” 65 year old adult and I don’t fully understand the concept of death and an afterlife. Those who say your daughter was too young to understand did not know her. She had to face these issues before most of us do. I totally believe that it was her decision and that she made it herself. I am so sorry for your loss. Much sympathy to your family.

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  19. I’m so sorry for your loss. I am a father of two and while I cannot claim to know the heartbreak you went through, I know that you were faced with impossible options. God bless you and your family and may Julianna rest in peace.

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  20. We’ve never spoken, but I followed your family’s story closely. Julianna touched me. The world is sorry for her passing, but she is with God now and she knew she was loved.

    Your family will be in my prayers.

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  21. R.I.P our little Angel, now you are in a better place little princess Julianna, for sure you will be miss, special your family, accept my deep sympathy 😭

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  22. Dear Snow family,

    Thank you for sharing your beautiful girl and the lovely tribute video with the rest of us. I first heard of Julianna’s remarkable decision to live her last days by your side late last year. While curiosity brought me here, your thoughtful portrayal of her joy and wisdom made me return. I am extremely sorry for your loss, and mourn with you all. She deserved every bit of the love and attention she received, as she gave the world more than it could ever repay. I hope grief treats you gently and that Julianna’s new peace embraces your home.

    Blowing kisses from Providence, RI

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  23. I have just the last 1.5 hours reading your posts for the first time, with tears streaming down my cheeks. Your stories are so beautifully and sensitively told.
    I cannot imagine the pain you and your family are feeling but I am crying for you. What an absolutely beautiful gift you had in your little girl, and how lucky she was to have you. May Julianna dance around in heaven and play, and run so fast to meet you up there, one day. All my love and prayers, Debbie xxx

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  24. I have enjoyed reading your blog and was sadden when I read about Julianna’s passing. I can’t image how your and your family are coping with such a great loss. All of us reading your blog have been blessed being able to be part of your family. My thoughts and prayers with all of your family.

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  25. i’m from Indonesia, you are little princess, like the angel…. i’m proud of you
    you have a good family
    still in your life
    always together
    always in beside you
    Although your family have much love for you,
    but God is loving you so much
    Rest In Piece…

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  26. i’m from Indonesia, you are little princess, like the angel…. i’m proud of you
    you have a good family
    still in your life
    always together
    always in beside you
    Although your family have much love for you,
    but God is loving you so much
    Rest In Piece…

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  27. You poor brave soul. I cannot imagine what you have gone through and are going through but my heart breaks for you. I cannot offer you any comforting words in these harsh times but am holding you and your precious darling in my heart, up to the light ❤

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  28. Dear Princess Julianna, I cried so hard this week when I learned that you have left us. Thanks for all the wonderful lessons you have taught us – to love life, to love love, to trust in God’s goodness and faithfulness even in midst of suffering, and many more. I will miss you dearly and you will always be in my heart!

    Dear Michelle, Steve, and Alex, thanks for sharing your precious princess with us. I am heartbroken for you all and may God comfort and lift you up.

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  29. You are the most wonderful mom and how lucky you both were to have each other.
    My son Jason is in heaven. I know he will be invited to Julianna’s first tea party. My heart is broken for both of us, Michelle. I lost Jason in 2000. It seems like yesterday. How we go on I do not understand but we do. For ourselves and our family. I, like you, am thankful for the years I had him. 19 to be exact. All we can do is keep them in our hearts and souls until we see them again. It is just not our time yet.

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  30. My heart is hugging all of yours. Julianna is free. Thank you for blessing my life with your sharing and you blessed your daughter every day.

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  31. Sweat litle Brave Princess Julianna, rest in peace, and I will never forget you, dear brave family, my condoleances..

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  32. I just can’t understand how these things can happen, and often feel so angry and upset about all this. So unfair and makes us feel so powerless. I wish you much peace, and that somehow we can better understand all these strange ways in which we move.

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  33. She’s free! The princess, angel, beautiful little girl is free now! she can run, she can move, she can be happy once again! she can make wishes that will immediately come true now that she’s in heaven, she can feel wind blowing through her hair and can laugh and be free, Little Juilianna is free, and like you said you wanted her to be comfortable, she is now. I’m so very sorry about your loss, although I’m 14 I truly understand your pain from losing a brother and a father. But you know what? We’re strong, just as strong as our loved ones who are in heaven, You protected your princess, you cared for her, loved her, gave her everything she wanted and that’s what you should be proud of. Heaven is a beautiful place to be, like she said, god will take care of her. Good care of her for sure. You guys were so so blessed to have a beautiful angel, be happy that she is free. The princess is looking down on you, make her proud and happy. You guys can do it, and much much love to your son. Send my love to him.

    Much love from Massachusetts ❤

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  34. I just saw this. I am so so very sorry. She is and was a beautiful child. I always enjoyed reading your posts. She is truly special and such a gift. My condolences are with you. I know that isn’t much especially since it’s been a couple of months. Please know you have opened my eyes to the disease and also to so many smiles. Y’all are an amazing family.

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