Happy, Bold, Confident, Commanding

In an e-mail to her friends, my mom had the perfect description for Julianna: she is “happy, bold, confident and commanding.”

HAPPY:

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May 2011. Happy, bald and beautiful.

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Winter 2014. She makes me so happy.

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June 2015. Alex has always been able to make her laugh. (Photo by Aubrie LeGault, Capturing Grace Photography)

BOLD:

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2014 – one of her hospitalizations. I swear, I don’t know where she learned to flirt.

Oct 2014: — To a male PICU nurse:

J: You are very handsome.

CONFIDENT:

7 June 2015 – (recorded in an e-mail to friends)

J learns that she is going to meet a new nurse soon.

J: Make sure you tell her about me

M: Ok – what’s the most important thing I should tell her?

J: I’m funny.

M: Uh huh.

J: Cute. Smart. Gorgeous

M: OK…

J: My eyes look like almonds. I’m honest. One day, I realized I like straight hair.

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Summer 2015. Almonds. (Photo by Aubrie LeGault, Capturing Grace Photography)

COMMANDING:

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Summer 2011.

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Summer 2015. Leg exercises.

Steve exercises J’s legs during body breaks. The TV is usually on. Whenever Steve pauses and looks at the TV, J says:

J: Dad, Dad, exercise!

And if he looks away again,

J: Dad, focus what you’re doing!

20 thoughts on “Happy, Bold, Confident, Commanding

  1. you are all in my thoughts an prayers. . . as a Native American woman I believe that prayer is powerful and offers comfort. . . children are a gift and you have an amazing gift in your daughter. . . you are truly blessed. . .strength, love and prayers to your family. . .

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  2. I believe in many circumstances that small children know more about death and dying than we care to know. They are much closer to ‘the veil’ being so young, and it is easier for them to grasp the concept. Particularly in your family’s case you have chosen to thoughtfully and gently insure that J is aware and I applaud you for that, I also send much love and light to you all. I am currently going through my own end of life prep but I am 63 and have lived a full life. Your daughter is a precious messenger who will, I hope, leave behind a legacy of how to properly treat a young child who knows what she wants from life and death. Thank you for sharing, and thank you for being such wonderful parents/human beings.

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  3. Just read your story on CNN and had to send prayers to your family. I cannot imagine going through what you all have gone through these past few years. I personally believe you are doing the right thing and I hope and pray that the time you have left with Julia is an amazing one.

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  4. She is a beautiful and amazing little girl and I ache for you all. She is really an inspiration, her bravery is incredible. I wish you all peace.

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  5. I just read your story on CNN and think the decision to let your child chose her path is amazing, selfless, and brave. I love that you gave her the choice to decide when she has fought enough. Not every child would have the cognitive ability to understand the choices and what it means to make that choice. When the time comes, you will make that final decision together and it will give you peace knowing it was the best choice. And a choice she had a say in.

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  6. The soul always knows what is best no matter what the age. Julianna’s wisdom and heart have spoken. Thank you for sharing your circumstance, and thank you for sharing the Love in your family with us all. We are better today because of your open hearts. In Divine Friendship and by His Grace, you are blessed.

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  7. What a beautiful little girl, and with my whole heart I believe she knows her exact wants and needs. As blessed as you are to have her, she’s lucky to have parents like you. Ones who not only listen, but know her deepest soul.

    And I suppose naysayers have a say. Everyone’s entitled to an opinion. I guess even of situations they’ve never slid their actual feet into. I don’t condone it, but understand. This is uncomfortable, hard to imagine, but still, that’s where trust comes. And that’s difficult for some. The truth is the truth though, and I’ll bet it’s in Julianna’s words. Her eyes. Her body language. I bet she’s all knowing.

    It’s her life; her right. And what’s right is right.

    My heart both swells and breaks for your family. I ache for the pain of… so much. Too much. But above all, soars in the beauty of honoring Julianna’s wishes.

    My love to you all,

    Jen

    http://www.avianareese.com/2013/10/the-story-of-us.html

    http://www.avianareese.com/2013/11/the-reason-why.html

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  8. I read your story on CNN.com and just wanted to let you know I believe you are absolutely doing the right thing. Only you know what’s best for your family, and I have no doubt that Julianna, despite her age, has deep insight about what she wants. I’m personally not religious, but regardless, accepting the inevitable and spending your remaining time together in the most loving and comfortable way certainly makes sense to me. I wish your family peace and strength.

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  9. Thank you for this beautiful, touchng story. I fully believe that Julianna had the right to make the decision about her treatment, especially since it was explained so well to her. As a nurse I am grateful that she is not being forced to ensure more painful treatments that would be of such limited or no benefit. I’m glad for her faith in heaven and her beautiful life and spirit that she has shared.

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  10. I just read your story on CNN, and I am sitting here in my college dorm room, crying. You have a very special daughter, and you have a very special family. I would give you a very big hug if I could. I am thinking and praying for you.
    I would like you to know that I was friends with Rebecca Townsend. Perhaps you’ve heard of her; her story went viral because she saved my friend Ben’s life. They were crossing the street on July 2nd, just ahead of watching the fireworks, and she pushed him out of the way of an oncoming car. It hit them both, killing her but only injuring him. She saved his life. All of our friends would give anything to have her back with us, but she’s made us a family, and I am so, so, SO blessed to have known her.
    Rebecca was a very, very kind person, the kind you’d love to be around. She was sassy and silly, very bubbly–effervescent. She was also very attached to the children in her family, and children in general. I am positive that she is in heaven, and I have asked her to take very special care of your beautiful daughter. Please know that she has an angel who will be there to greet her, someone whom I love very much that will be there for your daughter.
    You are in my prayers, and I weep with you. God loves you. God bless you and your beautiful family.

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  11. Just read both parts of your story on CNN. So truly heartbreaking what your daughter, and family, are going through. I so admire your strength and courage, and applaud you for letting Julianna make her own end of life decision.
    Remember, those who criticize have not stood in your shoes. Many may mean well, but they do not understand.
    Because of your (CNN) story and blog, Julianna also now lives in the hearts of all who have read about her. I wish & pray for strength, comfort and peace for all of you.

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  12. What a beautiful and wise girl Julianna is. I am very sorry for what is happening to her and to your family Michelle. I pray that she will have a decent amount of quality of life left. Thank you so much for sharing your heartfelt stories of life with us.

    I fully support Julianna and your wishes.

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  13. Good afternoon

    I recently read your article on CNN and as a father of a son and a daughter I am still fighting back the tears. I am deeply moved by the love and strength you and your family possess. More importantly, I am in full support and admire the courage your daughter Juliana has. No princess like your daughter should have to suffer or be subjected to hospital visits and her course of treatment, and even at her young age she is capable of making sound judgements which truly define what you as parents have instilled into her. I sincerely wish your family peace through this difficult journey.
    Regards, Todd

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  14. I just finished reading your article in CNN. My thoughts and prayers go out to you and your entire family. I have had the honor and privilege of caring for many children at end of life throughout my years as a nurse. The thoughtful, loving manner in which you honoring your daughter’s wishes should be a lesson for us all.

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  15. Julianna is so fortunate to have such wise, caring, and selfless parents in her life. She may not fully understand death, probably not, but she understands her condition and that she will only progressively get worse. No hope for recovery. This is true parenting. Doing what is best for the child and not yourself. This is courage and love on the parents’ part. Breaks my heart that your family is going through this but I support you completely in this very difficult time. May God help your family as you go through such a difficult time.

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  16. Juliana has a peace about going to Heaven because God has given it to her, it does not matter what the “experts” say. Jesus was clear and gave us many verses about the special type of faith God gives to the little Children. Keep hoping Julianna, your hope and faith is not in vain.

    Mar 10:15 Truly, I say to you, whoever does not receive the kingdom of God like a child shall not enter it.” Luk 18:16 But Jesus called them to him, saying, “Let the children come to me, and do not hinder them, for to such belongs the kingdom of God.

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  17. Hi there. My family is also from Oregon and was very touched by your family’s story and your journey through your daughter’s illness. She emanates so much beauty, wisdom and spirituality that most adults only ever can aspire to. My mother was brought to tears reading about your sweetheart and called me saying she wished she could do something to help out. I personally had to fight back the tears reading Julianna’s dialogue with you about heaven. As someone finishing up law school, I believe you and your daughter have made the best decision for her and God truly is looking after her by giving her such strong conviction and faith in these trying times.

    Anyway, it may be a long shot as I know you are probably overwhelmed as it is but if there is anything we can do to help out, please message me on Facebook. I have a younger 7 year old sister who just went to Disneyland and she is inspired by your daughter and also shares an affinity for Disney princesses. If there is any mailing address or PO Box you can share with me personally, my younger sister would *love* to send Julianna a friendly package in the mail (a letter, a photo, some kind words, perhaps toys). Thank you. Sending lots of love and prayers your way.

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  18. Thank you so much for sharing your journey. My heart aches for you and your family and I cannot believe that people have the nerve to question or second guess the difficult decisions that you are being forced to make. May God bless you as you navigate these difficult waters.

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  19. Don’t let anyone make you doubt the decisions you are making with your little girl. Not everyone would have the strength to make such an unselfish and loving choice.

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