Cast of Characters

Dec 2013 -- Julianna and Alex

Dec 2013 — Julianna and Alex

Julianna: J is smart, opinionated and kind. She thinks everything looks better embellished and is happy almost all of the time. She dislikes conflict and messy hair. Her middle name is Yuri.

Alex: A is J’s big brother by two years. He dreams of becoming an American Ninja Warrior. He learned to read by going through the entire canon of Calvin and Hobbes. He is my sweet and sensitive boy.

Steve: My husband, and simply the most decent human being I know. He sacrificed a career he loved to become J’s main caregiver. He is patient, calm and can fix just about anything. He is my rock star.

Fall 2011. Steve and J

Fall 2011. Steve and J

Me: wife, mother, neurologist and Cardinals fan. Recipient of many blessings.

Image by Aubrie LeGault, Capturing Grace Photography

June 2015. Image by Aubrie LeGault, Capturing Grace Photography

Homie: My mom. Alex started calling her this because he couldn’t pronounce the Korean word for grandmother, 할머니 (“halmoni”). She lives in the midwest but visits frequently. According to Alex, her hobby is “cooking and making people eat more and more food.”

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June 2013. Homie and J

Grandma and Grandpa: Steve’s parents. They moved into a house about five minutes away from us, and are one of the main reasons we have been able to survive as a family. They are salt of the earth and terrifically skilled.

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March 2014. Grandpa, J and Grandma.

George: our pup, disguised in a cat’s body. He just wants to be loved.

The disease: Julianna has Charcot-Marie-Tooth, a hereditary neuropathy.  She has an extremely severe form. Her disease looks more like SMA (spinal muscular atrophy), a motor neuron disease that can look like ALS (Lou Gehrig’s disease) – but in a child or even infant. Learn more about her diagnosis here.

88 thoughts on “Cast of Characters

  1. So sorry to hear about your daughter. I think you are really brave for going public with her story. She deserves dignity and to have her voice heard. I would make the same decision were I in your shoes. There is quality of life and quantity. It sounds like you are doing everything to give her the best quality of life you can in the limited amount of time she has left.

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  2. You and your family, your 💞💞DAUGHTER✨👑 are in my thoughts from this point on… Reading the story on Facebook I cried.. As a mother of 2 boys I could NEVER imagine the thought of ever asking that question to my kids… I couldn’t even talk to my grandmother about her dieing before it happened and telling her it was ok to go… J seems like a very BRAVE, MATURE little girl who is very very special not only to you, but now to many in this world… And yes she is correct she will never be alone in heaven… It takes a lot of courage to know your daughter wishes, it takes a lot of LOVE & RESPECT to full fill your 4/5 yr old child’s wishes… It may not mean much but you have my full support as well as many others in J’s wishes… I hope that this year continues on to the next and that when that time does come the Angels👼🏼 are by her side and take her on a white unicorn to be the princess👑👸 she truly is meant to be… Please keep us all updated. Would love to follow you on Facebook as well.. Don’t mind the haters, idiots out there under minding you.. If they was ever truly put in the position that you are then they would know.. As I said I have 2 healthy boys (8&5) so I don’t know what you are going thru, but being in the medical field all my life and I have a niece with spinibifida… I can relate to your heart.. Again always in my thoughts from this point on.. 💕💕✨👼🏼👑💞❤️😇

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  3. I am a palliative care physician and I read with disgust the comments of Dr. Arthur Caplan about your beautiful daughter and her decisions. He is way off the mark on this one even though he is considered and “expert”. I can tell you that she clearly understands what happens to her at the hospital and it is well within her right as a terminally ill patient (even at age 4) to say, “enough! I want to spend time at home with my family”. She has done just that and now you all can treasure every minute with her until God decides it is her time to join him. You all are a very brave, caring, and generous family for sharing your experience with the world. Blessings to you all and I will keep you in my prayers. Stay strong for your little daughter, you are doing everything you should be to make her last days the best for her. Bravo!

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    • It is refreshing to read this. My youngest daughter passed on Hospice in 2010. The least supportive was the Hospice Doctor who was over her care. He assured me he could make her better and get her back home. I stood my ground. After 20 plus years of fighting I could not believe that of all the people I had to fight, I was standing there sobbing in front a palliative care doctor. She passed 4 days later. He was wrong. I waited until she had been gone for a couple of months and I addressed some members of the board. I put everything in writing and made copies for those there. I read directly from it to be sure I didn’t leave anything out. It was my last fight for my daughter.

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  4. For a few days I saw this article with picture on CNN I didn’t want to read it because I thought how could you allow such a young child make a decision like that. My wife told me I had to read it, she had just finished and came into the kitchen crying. So I did and as I started reading I realized that as an adult I would have 67 years of feelings towards God and any doubts I might have on Heaven. Your little daughter only has in her short time on this earth her parents explanations on Heaven and God. That’s what changed my feelings on your decision. You gave your daughter a gift by allowing her to believe or maybe it’s better to say understand where her journey will take her, who is waiting for her and how she can be pain free and happy in heaven till she is with her parents again.

    Wishing your family Love and many days together.
    Hope we can meet your daughter one day here or there.

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  5. Dear Julianna,

    Words cannot express how beautiful you are. I will be 50 (yes, I’m an old man to you) in a few weeks – half century old. It is amazing, even after living a half century, how much I can learn from you. You have incredible parents, who love you beyond explanation. I know you feel that, which is great. As someone who struggles to be manly myself, I am in awe of your daddy. He is not only just your daddy but has also proven himself to be the man God wants us to become.

    It is now November 1, 2015 – a Sunday. I will go forward today with you in my thoughts and prayers the entire day. Thank you for all that you’ve shared with me, a complete stranger.

    God bless you my sweet child. Now go get on your magic carpet, and play hard with your dolls.

    With Love,
    Scott Stephens

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  6. Julianna..
    I read your story on CNN. You are an inspiration to me. Your positive outlook on life is truly amazing. You are a strong, smart, and loving person. You also are beautiful in your princess dresses that you were.
    You have amazing parents and a brother who love you more than life itself. I fully support all of y our decisions and your memory will last longer than anything else. Just take life 1 day at a time. never take life to serious. Always smile, laugh, and enjoy every second with your family..
    As for the parents.. I fully 100% support your decision. Give your daughter the best life she can live, and that is eexactly what you are doing. I loved your story. This was so touching. And yes.. I teared up a little bit.. And yes I am 6’1 220 lbs and a former correctional offcer who doesn’t always show a lot of emotion. But i fully admire your outlook on life and your decisions you make with Julianna.

    I wish you all the best and hope to read more and follow your journey. Thanks for sharing.
    Matthew

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  7. I just read your story and you are so brave, strong, courageous. I could never begin to imagine the position that you are in and I commend you for following her wishes. I don’t know if I would be strong enough to even ask my children this questions. For all of your critics, they are just hurtful and insensitive. You are there with her every day and know whether she is able to make this decision. You see first hand the pain she is going through. I commend you and wish only the best for Julianna and your family in the next (hopefully) coming years. My thoughts and prayers are with you and look forward to watching the precious time you have left with your beautiful daughter!!

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  8. I read your story on CNN and it made me cry. I have two young daughters and I can’t even imagine what it must feel like. I can’t stop thinking of you Julianna. I pray for you every day. I have read every article I could find and as a father I can’t even imagine how difficult the decessions that will have to be made. I love how strong, courageous and beautiful of a little princess you are. I am inspired and will continue to support Julianna and her parents.

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  9. Dear Julianna,
    I just read the CNN article about you and your mom’s blog. They make me feel like we are friends, even if we’ve never met. I just want to say hi! to you and wish you all the best. You’re lucky to have such a loving family, and they’re lucky to have you too! May God keep all of you in His love, always!

    Mai

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  10. Julianna’s “homie” (I love this, my kids call my mom ha-ma-mee) is a friend of my mother’s and she directed me to this site. What an amazing kid, what an amazing family. I am bowled over by her grace, wit, and tremendous heart!! Prayers and love from Brooklyn, NY.

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  11. Thank you for posting your story. I have a daughter who is 2 and we are waiting on the genetics test to see what kind of CMT she has (the nerve conduction test all but confirmed she has it). Many of J’s symptoms sound very similar to my daughter’s – she can pull up/walk with walker or hand. I also worry about her breathing and swallowing. This is a very hard situation. You all are an inspiration. We will keep you in our prayers.

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  12. Dear Julianna,

    I became aware of your story today while watching CNN during my lunch break. You are such an inspiration to me with the incredible courage, bravery and faith that you exude every single day. If anyone should be called a Princess, it is you and you alone.

    I will pray for you and your family and I hope with all my heart that God grants a miracle and cures you. God bless you Princess Julianna.

    Prayers and Love from London, Ontario, Canada.

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  13. Hi Julianna,

    I’ve been following your story and praying for you. I’m in awe of your spirit and strength. Someday, when I grow up, I want to be just like you! 😉

    Sending lots of love from Elk Grove, CA,

    Arlene

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  14. Hello Juliana & her family! I just started to read your blog and I´m praying for Juliana 🙂 I know that we have God who can heal every sickness & condition, if we just believe! Even what is impossible for medicine, is possible to Him! Because He is our Creator and everything is in His hands. I say this with certainty, because I´ve seen so many people getting healed from different, serious conditions (including myself) by Gods mercy 🙂 I send you this collection of Bible verses about healing, maybe you could read them together with Juliana daily 🙂 Our God is powerful and He will bless your wonderful family ❤
    "And my God will meet all your needs according to his glorious riches in Christ Jesus." (Phil.4:19).
    Bible verses about healing: http://www.biblestudytools.com/topical-verses/healing-bible-verses/

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  15. … all grandmothers must be all of the same breed – how else does Alex know MY grandmother’s hobbies? Even as she is past 80 now (& as I am a young adult now), her hobby -also- seems to be “cooking and making people eat more and more food.” 😌😋 Especially during Lunar New Year’s eve, when we have reunion dinner!

    Keep going Steve & Michelle, have been really blessed each time I read about J’s quotable quirks 🙂 ❤ xx

    Love from Singapore,
    Eudora (jiejie)

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  16. Your life’s story has truly touched my life, I am so impressed by the courage of all of your family and the understanding you have with your daughter’s decision . I don’t know if I would be as brave as you have been. Keep up your faith and may God bless each and everyone of you and all that are there for your pressous daughter.

    GOD BLESS AND GOD LOVES ALL OF YOU. TIMOTHY

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  17. My heart and prayers go out to you and applaud the strength you have. As the parent of a little girl the same age, I can’t imagine my house without her running, jumping or being silly; nor can I imagine any life without her. To be brutally honest, I don’t know how or what I would choose but I do know I am grateful I don’t have to. I hope you all meet for a dance party in heaven, filled with chocolate, bouncy houses and all the dreams of childhood.

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  18. God bless you and your family, but he already has , blessed you with Juliana. Don’t pay any mind to any haters and what they say. You are brave and strong.

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  19. Your story truly touched me, especially as a first time pregnant mom. Please stay strong. I wish nothing but the best for your family. Katie in Denver

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  20. Pingback: Julianna's Adventures - Help 5 Yr.-Old Julianna Raise Funds for CMT Research -

  21. Thank you for blessing us with your words and letting us be on this incredible journey watching Julianna’s life. May love surround you and your family, your daughter has brought light, smiles and the imagination of simple joys to us. How blessed you are to have a child such as Julianna with such a beautiful soul. We send our love and comfort in prayer 💗 Kendall in Roseville, CA

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  22. Thank you so much for sharing your beautiful Julianna! She will be sadly missed by so many. Many of us only know her through your sharing her life and story and I believe we are all blessed because of this. Please know that blessings and prayers are sent in abundance. You were blessed by a beautiful soul and you blessed us (the public) by sharing her. Thank you so much!

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  23. Oh No! I thought when I read the headline. I so remember the story last year of your beautiful Julianna! Saying I was “touched” and “moved” would be an understatement!! I found your blog, and would return often to see how this glorious princess was doing. Learning of her passing, I had to come to your blog again. I wanted to express my sincere condolences and thank you for sharing such an amazing soul with all of us. Julianna was wise and brave MUCH beyond her tender years. I wanted this story of Julianna to continue for many years! God had other plans. Take comfort that as she so blessed your life, you in turn have blessed so many others in sharing this precious jewel. You and your family are in hearts and prayers.

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  24. Thank you for allowing us to know Juliana through your words and pictures. She is truly an inspiration and a beautiful young girl. Our Lord is happy to have her in heaven and we should celebrate her life and be happy that she is watching over us with her big smile and contagious sense of humor. Blessings to you from one Korean mom to another.

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    • ~O-H!
      WOW! You babie girl Julianna! You have earned your Princess Angel wings! I adore you! I have followed your story since the inception. May you rest in peace! You are an inspiration! I’ll just pass the tissue box….I have a few dogs up there who will give you kisses and want to play! Oh and a couple of birds, gerbil’s, hamsters and guinea pigs that will love you! Rest well Julianna! I love the choice you made at a very young age! Your parents are wonderful! May your Princess wings sparkle on everyone. I am sure they will!

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  25. God has blessed you with your daughter Juliana. You have blessed us with your story. Life is a gift. Love is the giver of the gift and has us all in its care. God bless your family for making this Earth a better place.
    Mark

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  26. Dear Steve & Michelle,

    I was deeply touched by Juliana’s story. Thank you so much for sharing it. And now that she has gone to heaven, please know my thoughts and prayers are with you as you grieve her loss and celebrate her very special life. She will always be part of you; no one can ever take that away. And the witness of her short life will touch many lives.

    I experienced something very similar with my sister who had Down Syndrome and also chose “heaven over hospital.” She died at age 28. Here is a blog article I wrote about her: http://www.bruderhof.com/en/voices-blog/2016/may/broken-but-blessed-an-unlikely-guide

    I would love to be in contact with you.

    Wishing you God’s peace and comfort,
    Rebekah

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  27. God bless your beautiful family. I was so touched by your story and Juliana will be always remembered as a beautiful light in this world.

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  28. I am so touched by your story. I am praying for you and for your family, that God comforts you as you go through the loss and mourning of your little girl. I know that Juliana’s life served a purpose here, if only for the rest of us to renew our faith and lean on Christ. Thank you for being a blessing to us by sharing your story. What a precious and remarkable little girl!

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