Truly Living Girl

About six months ago, I told Steve that I wanted to share Julianna with the world.

I had a hard time articulating my reasons and I didn’t have a plan. We are cautious parents and introverted by nature, so I questioned the wisdom of it all. To my surprise, Steve said “Why not?”

“Julianna is a bright light.” he said. “Maybe she has something to teach the world. “

A few weeks later, Julianna and I had a conversation about heaven. Its power gave me courage, and I wrote my first piece for the Mighty in May. We started planning a blog. I wanted to document more aspects of our story: the medical stuff, J’s fabulousness, her profound and funny words. I hoped that my friends and family, at least, would read it.

About six weeks later, I got a call from CNN — and this is probably why you are reading this post.

We had no idea it would get this big. Media outlets all over the world told our story – our long, complicated story – in a few paragraphs and asked people to weigh in on the “controversy.” Other groups started using Julianna (and her photos) as a symbol for things that have nothing to do with our story.

It was a bit overwhelming at first, and I felt like retreating. I shared my concerns with Steve, who was (as usual) calm and steady. Maybe our story went big for a reason. Maybe it will help other families who have loved ones with a terminal illness. Hopefully it will start thoughtful conversations about what is important and how we want to live out our final months – or decades. Perhaps there will be more awareness about Julianna’s devastating disease and we will get closer to a world without CMT.

So we are back to my original intent: let me introduce you to our Julianna.

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Oct 2015

The headlines call her the “Dying Girl.” We think she is the “Truly Living Girl.” If you want to know what it means to truly live, look into her eyes and read my stories. You will find no better teacher than this girl.

Last night, I had to tell her that she couldn’t go trick or treating. It was cold and rainy, and we just couldn’t risk it. I told her I was so sorry, and that she could still dress up and trick or treat in the house. For about five seconds, her beautiful eyes welled up with tears, and then it was done. She asked us to dress her up in her cowgirl costume, and we wheeled her around from room to room so that she could collect treats. She loved it.

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Halloween 2015. No bueno for our BiPAP dependent princess.

As I tucked her in, I told her I was sorry about not being able to go out for Halloween. I knew she was really disappointed. She dismissed, saying “It’s OK. I was just pretending.” And that was it.

A lot of people tell us that they don’t know how we do it. The only answer I can give is that we follow her lead. If J doesn’t feel sorry for herself for missing out on Halloween, how can I?

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Today. We got a break in the rain and J got to do some impromptu trick or treating. Thanks to our neighbors for the extended Halloween hours.

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Today. J and Homie and American Ninja Warrior Alex.

Our Julianna lives joyfully and loves generously. She is a bright light, a gift from God.

PS — We are overwhelmed and humbled by the hundreds of beautiful messages sent in by those who are touched by Julianna and our story. Your words, good wishes and prayers strengthen us. We cannot thank you enough.

41 thoughts on “Truly Living Girl

  1. Thank you for sharing your story. My thoughts and prayers are with you. Your story gave me hope, inspiration and strength. My ten-year old beagle underwent surgery for removal of a mass. He is like my third child and although he is fine, I was depressed for days. Your story helped during that time and now, I take it one day at a time..enjoying every minute.

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  2. I signed up to get a notification each time you post a new entry! This is my first. You call Julianna a gift, I call her a miracle, a blessing, and most importantly, an angel. Thank you, Michelle, Alex and Steve for sharing your precious Julianna with the world. God bless you so much.
    B. Omondi, Nairobi, Kenya

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  3. Dear Michelle,

    I have a five year old daughter who is the light and love of my life so reading about Julianna, I fully appreciate the joy and pain that every day brings to you. You are Julianna and the family are in my thoughts and prayers and i know that there is a reason for this, if only to show us all how beautiful, fragile and fleeting this life is. Julianna is already so known to me and I am overwhelmed at her wisdom and maturity. In Buddhism, we believe that young children who die young are past masters who return to this world to teach the rest of us valuable lessons. And Julianna is living proof of this, she truly is masterful beyond her years.

    Lots of love, always

    Jennifer, Diya and Dan Feinberg

    Johannesburg

    Liked by 1 person

  4. There’s a Julianna in our small community here in northern Maryland who just turned 13 and is fighting a rare childhood cancer for the 5th time these past 7 years. She has a “no whining” attitude also. Such strong children and families ♥

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  5. I just want to say that I am in awe of your daughters character and grace. What an incredible human being regardless of her age. My love and prayers to you and your family. What an example of an angel on earth.

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  6. Hi Michelle, you are correct that I stumbled upon this beautiful story b/c of CNN, and I am so glad I did! Julianna is a beautiful child whose eyes shine bright with life and courage. She is an example of the glory of God in a world that is sometimes difficult to navigate; a God who who has given your family the courage to give Julianna the richness of life that she deserves. I am humbled and in awe of this beautiful story. Thank you for sharing it with the world.

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  7. Thank you for sharing your journey. Yours and J’s wisdom is astounding. You are listening to her. That is the best parenting ever.

    Francesca

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  8. Hii Julianna!! I loved your pick for a Halloween outfit…cowgirls are def cool!:) I’m so happy you still got to go trick or treating despite a day late, you still did it!! I hope to talk with you and your mom someday soon. I Also have CMT and am on my life’s mission to raise awareness for our illness. You make me want to fight even harder…Thank you for being such a bright light and for the strength,..God bless. I hope you have a good day today!! Love your cmt sister, Bernadette
    http://WWW.Bernadettecmtmovie.com

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  9. Thank you for sharing your story! I read your article on cnn and was amazed by your courage and your little girls innocence and happiness despite what she is going through.
    I have family members that also have charcot-Marie tooth disease; although not as serious, this story still hit home. I am a mother of two young boys and can’t imagine what you and your family must be going through. It’s stories like this that teach the world to hope and to find beauty and strength in an otherwise tragic situation.
    Thank you for sharing
    Xo

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  10. Thank you so much for writing about your Julianna. It helps me see my own children with clearer sight, and savor the beautiful details and blessings of life that i so often miss. Really, Jesus spoke truth when he said we have to become like little children to enter the Kingdom. Thanks again.

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  11. As a pediatric nurse, I applaud you, as a parent of a medically fragile adult-child I applaud you even more. Your sensitivity to your child’s needs and wishes are admirable.

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  12. Hi Julianna, and Family,
    I was terminally ill with stage 4 liver disease in 2005. I had about eight months to live. Then my faith took over and I accepted my situation. In August, 2005, I was blessed by God and received a liver transplant. I guess God was not ready for me yet, and had more for me to accomplish for him.

    When I read about you, I remembered how peaceful I had felt for those 6 or seven months before my life was extended by the transplant. I sense that you too are at peace despite what you are going through. I am sure that, like me, many, many people are praying for you. I know that I am praying for you, as is my wife. God sends us that peacefulness to strengthen us as we struggle with the disease, its treatment, and the suffering that goes with it. That peacefulness is something that my wife could not understand, and that you Mom and Dad probably cannot understand either. As a five year old you may not know who God is but he knows you. He has sent a guardian angel to watch over you and bring you that peace from God. I will pray many rosaries for you asking our Blessed Mother to intercede for you with her son Jesus in Heaven. What ever happens little Julianna be at peace, be strong, and enjoy each day with your Mom, Dad, and Halmonie. By the way even though you may not see your angel you can talk to the angel, because he is your messenger with God. It also sounds like you are part Korean. The word for God in Korean is “Ha Nu Nim”.

    Dear Parents, I hope that my comments did not upset you in anyway. If they did then I apologize. In all of humanity children are the closest thing we have to God on earth. Seeing your daughter suffer hurts me almost as much as it does you. That is why God is so important in our lives.

    May God Bless all of you.

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  13. Thank you for sharing Julianna’s life with the world. I have been so moved by your beautiful and sometimes heart wrenching missives. My hope and prayer is that everyone who reads your words finds a little bit of Julianna within themselves…and live their lives with the same passion, joy and enthusiasm as she. God bless you and your family. You are all in my prayers.

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  14. So much Halloween fabulousness! Also love Alex, the ninja warrior, in the background! What a precious family moment.
    PS- As a Texan, I wholeheartedly approve of Julianna’s version of a cow girl. Bigger is better!

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  15. Hi, I read your story on your daughter, I was so sad, my prayers go out to your family and I know how it is I too have gone through something similar, may God bless all of you!

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  16. My heart tears to hear about Julianna living such a difficult life, but after reading some of your posts I truly think she couldn’t have had a more understanding, strong and loving family!
    And it makes me so happy that she knows what a wonderful place heaven is. God bless your family Michelle!!

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  17. I just saw your story on CNN and my heart goes out to all of you. I am so glad you asked Julianna what her wishes were; it’s clear she is a very wise and loving little girl, and I think all of you have made the right choice. It’s also clear that you are wonderful parents — I loved seeing her little painted toenails and fingernails, and all her princess outfits. But it’s more than giving her things; you have clearly given Julianna all the love in the world. Your story is so inspirational; thank you for sharing it.

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  18. Hi Michelle

    I normally don’t post comments on websites (and I couldn’t find an “email me” link on your blog), but I saw your story on the news just now (and also read an article from CNN) and was deeply touched.

    (I’m actually somewhat at a loss as to what to say next – I’ve been sitting here staring at the computer screen for about 10-15 minutes! But I feel it on my heart to drop you a note, so here goes.)

    By way of introduction, my wife and I are parents of two special-needs children, so we understand the constant hospital visits and how “normal” for us is so very different to “normal” for others. Sometimes other people look at our lives and tell us how inspiring and brave we are, and how they wouldn’t be able to do what we do – but to be completely honest, at least for myself, there are days when I wish that I could trade all that “inspiration” and “bravery” for their “normal” instead.

    But then I’m starting to learn that God cares more about my character than my comfort.

    At the risk of sounding trite, I just want to encourage you and your family, and tell you that both you and your husband are indeed an inspiration. Not because of the journey that you’re going through. Not because of the things that you do that “no other parent thinks they can do”. But because you’ve instilled a hope – an earnest expectation – in your little Julianna, of something better that is yet to come. Of having an expected end. Of a place of endless joy with the one who makes all things beautiful in His time.

    When my wife and I first started going on our journey, we heard a song called “Blessings” by Laura Story – the words to the chorus are:

    What if your blessings come through rain drops
    What if Your healing comes through tears
    What if a thousand sleepless nights are what it takes to know You’re near
    What if trials of this life are Your mercies in disguise

    There are still days when I wish for a different “normal”. But looking back, I can see that I’m not the same man as I used to be. I am a softer. More compassionate. Less quick to judge. (And quicker to tears!) Somehow, I can’t help but wonder whether this is God’s way of making me more like Him. Of graciously working on my faults and imperfections. Of helping me to understanding the true meaning of “joy” and “thanksgiving” instead of complaining and murmuring about what my life isn’t.

    The moments you have left with Julianna are precious – and I’m so glad that you’re doing every bit to cherish them. It reminds me of a scene in a movie called “Courageous”, where the father (who had lost his daughter in a car accident) finally reaches a place where he is no longer angry for the times which he didn’t have with this daughter – but grateful, for the times which he did have with her.

    I know there’s some controversy in the media lately about the whole “heaven” or “hospital” choice – and I’m not writing to comment on that. But I do want to say that if only more people (children and adults alike) had the same understanding of “choosing” and “wanting” to go to heaven and to be “present with the Lord” – I think this world would be a very different place.

    So all that to say – you and your husband have done a great job with Julianna. I pray that the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.

    Enjoy the precious moments you have with your “truly living girl” – when the time comes, when I also am made truly alive and incorruptible in Him, I look forward to meeting you and your precious Julianna on those streets of gold.

    Yours in Christ,

    Bernard Luk
    Sydney, Australia

    (P.S. In case you’re interested in our journey also, my wife use to keep a blog at http://madeline-hope.blogspot.com.au/, although I think she’s migrated it to Facebook now.)

    Liked by 1 person

  19. I have been deeply touched by your story. I am a mom and have great respect for you and your family. You are one strong parents and your girl is precious.I hope God moves everything in positive direction for you. Juliana my dear you are and will be in my prayers always.
    I was so happy to see your post today. I was worried that hope you havent stopped writing because of all the media coverage. Your daughter has inspired so many of us. To me she has taught so many things. I am sending lots of hugs for Julianna and you.

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  20. Thank you for opening up your hearts and sharing your daughter.Julianna’s physical weakness brings out a princess warrior.
    You story reveals a scripture written in the bible.LIFE IS LIKE THE MORNING FOG,HERE FOR A MOMENT THAN VANISHES. This place on earth is temporary and Julianna is touching hearts of men and woman with her courage.Thank you!Praying for you and the family from Jersey♡

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  21. Love and prayers to Julianna and all of you who love her! Be strong. God bless always and may He grant you all much peace and joy all your days together on earth. And, love, forever.

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  22. A beautiful story and a beautiful little girl. I admire your courage to go with your daughters wishes and against all those who have not walked a mile in your shoes. Our children are gifted with more knowledge then we ever give them credit for, I saw it in my own son during the 7 months he battled with terminal brain cancer (GBM) He was 2 1/2, he had endured 4 surgeries, rounds of chemo and when he was done, we knew. Complications from his last brain surgery sent us into the er after 2 glorious days at home…the complications could only be temporarily fixed by another surgery by inserting a drain tube into his brain running through his body, another surgery without its own set of complications. The doctors sat us down and said: you can either 1) put him through another surgery, delaying the inevitable for a month or 2) let him go peacefully. We chose to let him go peacefully rather then suffer anymore. The doctors then gave us peace by saying the following words: As physicians, knowing what lays ahead for your son, this is the best for him. As parents, we cannot imagine what you are going through and having to make such a decision.

    No one, NO ONE has the right to say anything unless they have been in your shoes. It was and is the most heartbreaking decision ever to let my son go – my first son, my baby. My heart breaks everyday without him here but I know and am comforted that he is happy and healthy now. He told us he was ready to go the days before with little things he did and said, we knew it in our heart, we felt it. As parents in circumatances as ours, we are faced with things no one knows about unless they have been through it but we are always thinking about our children first. We know how fragile life is, we dont take a moment for granted, our entire thought process changes and our priorities change. We sacrifice everything for our childs happiness and comfort.

    Many prayers being sent your way and much love. Thank you for sharing your story and your beautiful little girl!

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  23. Your strength and courage amazes me. Julianna is a blessing to your family and to the world through your sharing her story. I pray that she stays well for many years so you and your family can continue to enjoy her beautiful spirit. She is wise beyond her years! Thank you for sharing Juliana’s story (and your’s). You are a very brave mother!

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  24. I read about your beautiful child and her heartbreaking decision after hearing about her on The Talk. I will never again complain about anything life tosses my way (Life’s simply too short for that).Your daughter has given me the courage to live when no-one else has been able to. Your sweet Julianna truly is a gift from God to the world. She will teach the world to have courage in the face of many difficulties. Your story has made other parents with ill children realize that they’re not alone in their struggles. I commend your courage where Julianna is concerned. I will strive to be as courageous as your little angel. Thank you for the strength, sweet Julianna.

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  25. Dear Juliana,

    Let me introduce myself first. I am a small animal vet. I have a family of 4. Me, my better half, my 2 year old son and a very lazy cat.
    I got to know about you when I was reading CNN news. Thanks to CNN.
    I have only one message to convey to you and your brave parents:
    Have faith in GOD. The cure of any disease in this world comes through healing mind even before medicine. Every night before you sleep, close your eyes and imagine for 15 minutes that you are happy, healthy and do whatever you wish in your imagination and thank GOD.
    I will pray for you every day. God bless you and your family.

    Ashish

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  26. As a father of two children, one of whom is a princess loving three year old girl, I cannot imagine what this journey has been like for Julianna and your family. I am quite literally reduced to tears even contemplating it. I commend all of you for your bravery, wisdom, and the gift of your story. Thank you for taking the risk of sharing; light like Julianna’s helps illuminate a world which seems ever darker. Light shine upon you all and may the Creator bless and keep you.

    Ryan

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  27. A not for Julianna:

    Hi Julianna (and family):

    I want to tell you how amazing you are! I don’t know you at all but I saw your story on CNN. You have such a beautiful smile and a cute sense of humor. Your mother and father love your very much and you can tell that so many people care about you from all the loving posts on this site.

    I know you already know this but you are protected by god. He/She is always with you (and me too) and god is at your side wherever you go. I will keep you in my thoughts and prayers. I hope you are smiling and I wish i could meet you in person. I know my dog Zoey would love to meet you. She loves kids and she would really love such a wonderful person like you are.

    Keep smiling and give you Mommy and Daddy a big smile for me to thank them for all they do to love and cherish you.

    Thinking of you,

    Mark

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  28. I am sending love and supportive thoughts to all of you. Your love for each other shines in your photos and writing nearly as brightly as Juliana does. I was diagnosed with CMT at just about her age, and I am considered to have a severe case but I am thankful to still be working and enjoying life at almost 50. I am also the mother of a daughter (adopted) with special needs who shares your sweet girl’s uplifting attitude. It is such a blessing, and I’m sure you will understand when I say that she humbles me every day by being a better and more mature person than I will ever be.

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  29. Mrs. Moon,
    I live in Victorville, California. I ran across this story on the internet. Heaven over hospital: Parents honor dying child’s request. I passed the story up several times for fear of the content of the story. Even after several hours; I kept getting drawn back to the title. As I sat at my computer I was compelled to click onto the story. As a Christian this is one of the greatest stories of PURE FAITH I have ever heard. But very few people could write a blog and tell their testimony like you are doing. Michelle, the way you write your blog, the pictures, the things you say and how you express them are awe inspiring. You speak genuinely from the heart about a “little treasure” in the form of a beautiful little girl. I don’t think Juliana will ever know how many lives have been changed just from reading your blogs. How through reading your blogs; how many people rededicate their lives to Christ. How many people will make decisions to know Christ; because of the UNSKAKEABLE FAITH of one little girl who believes in and loves God. The tangible reality of her faith is made known to them through these blogs. No, you will probably never know why you are writing these blogs. (in the mist of what you are going through); but there is something in every single blog, somebody “clicking on” needs to see or hear. After reading, will change their lives and their priorities in life forever. Thank you, from the bottom of my heart for sharing your life changing story with the world.
    Mrs. Lorna E. Redd

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  30. Dear Family,
    Thank you for sharing your story with us. Your decision to talk to your daughter about what she wants despite her young age was very courageous and the right thing to do. I strongly believe Julianna fully understand what is happening and I wish more parents in your situation would realize that and give a voice to their ill children and respect their choice as heartbreaking as it can be. Allowing Julianna to be at home with the one who love her is the best gift you can give her and your family. As a neonatal nurse, I believe that the ultimate gift of love is to allow a peaceful death surrounded by the ones who love you. Thank you for respecting Julianna’ s choice. My heart and prayers are with your family.
    Dominique

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  31. Dear Michelle
    i just have finished read all the post since i knew about your story in a local newspaper.
    I really think that Julianna is so special and lovely she is full of love and in her eyes you can see that the is not pain in fact she really want to teach us how we should encourage life!! send all my love and hugs to your family in special to Julianna (hope that someday we can play and dance together as i do with my little niece) my prays with you! god bless you!
    Kind regards from Lima-Peru!

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  32. Thank you for sharing your story. Julianna has touched me and I know others with her beautiful eyes and angel face. You and your husband are strong, I admire you.. I feel your happiness and sadness. I pray God continues to give you strength and support. I pray Julianna stays with you – with us, much longer. She is a Blessing and has shown the world what life really means. Sending her my love and sending the family my prayers.

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