“Don’t Worry. God Will Take Care of Me”

June 2015. Forehead to forehead. One of my favorite nighttime rituals. (Image by Aubrie LeGault, Capturing Grace Photography.)

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March 2014, Woodland Tulip Festival. It’s hard to believe, but heaven will be even more beautiful.

Sleeping is not Julianna’s forte. Bedtime is 8 but she rarely falls asleep before 9:45. She has very little movement below the shoulders now, so someone sits at her bedside until she drifts off. Steve and I are supposed to take turns, but I volunteer for most of the nights. I know that my time on this earth with Julianna will be far shorter than I want, so these hours are a luxury.

She needs me to take care of all of her physical needs. I turn her, suction the saliva that she cannot swallow and I keep her clean. She also needs me to engage her mind. It is always active, and she needs to share.

Her physical body is profoundly weak, but, verbally, she is like an elite gymnast. Her words are rich and precise. She uses them to entertain, engage and to show her love. Above all, she wants to be understood. This is harder now. Her disease has also taken away volume and enunciation, but those who invest the time and effort are rewarded abundantly.

Her words about heaven  prompted me to submit a story to The Mighty, a site that features many touching stories about people living with disease and disability.  Before this, my only attempt at mass communication was the occasional group e-mail. Sharing this story was way out of my comfort zone, but I felt that I needed to share Julianna with the world.

The conversation posted on the Mighty occurred in May 2015, and it was not the first time we talked about heaven. The original heaven conversation took place several months earlier. I remember being overwhelmed by hearing my four-year-old daughter speak about her wish to go to heaven. I thought I was so stunned that I didn’t write it down. (This is how I documented it in my second story for the Mighty, “How Our Daughter Helps Us Face Our Greatest Fear” .)

Happily, this is not the case. As I went through my e-mails in preparation to start this blog, I found the conversation that started everything. It was all in an e-mail.

9 Feb 2015 – e-mail to my mom

Today was a little hard b/c J needed BiPAP so much. And she was upset for the first time in a while – it didn’t last that long, but it’s hard for me to see her upset at all. She said she was upset b/c George licked her foot (he has a rough tongue)… She was OK and playful after she got over everything.

Yesterday we read the heaven book. I’ve been wondering about our plan to take her to the hospital if she gets sick again – b/c it’s even harder now to imagine her suffering. So I decided to ask her. Her answers were fast and clear.

Me: Julianna, if you get sick again, do you want to go to the hospital again or stay home?

J: not the hospital

M: Even if that means that you will go to heaven if you stay home?

J: Yes

M: And you know that mommy and daddy won’t come with you right away? You’ll go by yourself first.

J: Don’t worry. God will take care of me.

M: And if you go to the hospital, it may help you get better and let you come home again and spend more time with us. I need to make sure that you understand that. Hospital may let you have more time with mommy and daddy.

J: I understand.

M: (crying) – I’m sorry, Julianna. I know you don’t like it when I cry. It’s just that I will miss you so much.

J: That’s OK. God will take care of me. He’s in my heart.

109 thoughts on ““Don’t Worry. God Will Take Care of Me”

  1. Michelle,
    I shared Julianna and your blog with my ladies Bible study at church tonight. Not a dry eye. One lady said, “Out of the mouth of a babe.” We are blessed by Julianna’s faith in God and the promise of eternal joy with him in heaven. The ladies will pray for Julianna and your family. Blessings, Teddi

    Liked by 1 person

    • Michelle,
      I am a friend of Teddi’s; and we are currently doing a bible study together. She shared Julianna’s touching and very inspirational story with all of us. What a blessing. Thank you for allowing us to be a small part of your daughter’s life. I look forward to reading more about her and your family.

      In His love,
      Deb

      Liked by 1 person

  2. Hi Michelle,
    I’m a friend of Teddi’s, and we are currently doing a bible study together. She has shared your daughter’s beautiful heart-warming story with all of us; I must say how much she has truly touched our hearts and lives. What a blessing and joy she is, and such an inspiration. Thank you for opening your life and heart with all of us. I look forward to reading more about Julianna and your family. Will be lifting her up in prayer.

    In His love,
    Deb

    Liked by 1 person

  3. Michelle, Thank you for sharing your daughter’s understanding of “going home” so well. God has a plan for healing, whether it’s on earth or in heaven, and he lets us know what track that will take. I pray that your family’s testimony reaches many people.

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  4. Thank you so much for sharing your family’s story and journey. While I can’t even imagine the difficult times that you face, I very much appreciate how you have taught us that God loves us all and is mindful of our individual lives. May the Spirit of the Lord continue to be in all your hearts to comfort in this great time of need.

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  5. I think that you are doing the best thing for Julianna. Even though she is a young child, the things she has had to experience during her treatments gives her enough understanding of what she wants to do and the end result of what will happen to her. For people to judge you for the decision all of you have made is cruel when they have no idea what it is like to be in your position. I lost my daughter to Pancreatic Cancer when Amy was twenty-one. Amy died at home in her own bed with all of us there with her. Watching your child just fade away is something I tell everyone that they should not have to do. I think of Amy every day, as you think of Julianna. Having her home and being with you is far better than her being in the hospital at the end of her life. You are doing the right thing.

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  6. I read your story today about Julianna on CNN. I cried like a baby.. I am so sorry for her and you all that she is suffering so but at the same time so overwhelmed with her beautiful soul.. She is a beautiful child, so smart and mature. She may not be with you long, but treasure every moment and feel blessed to have had such a wonderful daughter. Please honor her wishes and ignore the naysayers. The only person that you have do right by is her. I wish there was something I could do to help her.. Please know that you all are in my prayers. God promises a day when no one will be sick, or die. Keep turning to God and he will comfort you in the dark days to come, but hold on to his promise. Rev: 21:3,4 ” 3 With that I heard a loud voice from the throne say: “Look! The tent of God is with mankind, and he will reside with them, and they will be his people. And God himself will be with them. 4 And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.”

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  7. As a mother of two boys who aren’t much older than your kids, I can only imagine how difficult this decision has been for your family to make. My heart aches for you and your family, and I am blinking back tears as I write. I pray that you will have much more time with Julianna before she leaves this Earth, and I pray that God will continue to grant you peace and assurance during this time.

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  8. Michelle,

    I wish the best for you and your family. This can’t be easy on any of you. You have one brave little girl and I think it’s wonderful that you and your husband are respecting her decision. God is smiling down on you guys and will take care of all of you. I hope the best for your family and especially your daughter. She is beautiful and so is her view on Heaven. Best wishes

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  9. Michelle,
    I read your story on CNN. My coworkers and I cried. Please know that we are sending
    prayers your way. I know that our sweet Jesus will guide her and welcome her into Heaven.
    I have 2 boys of my own and I don’t know what I would do if I was in your situation. We
    lift your family in prayer. May God bless you always. Thank you for sharing your story. I will read it
    my 5 year old who knows all about Heaven.

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  10. Dear Michelle and Steve,
    Thank you for sharing your personal story. It was very inspirational.
    I just want to let you know that You and especially Julianna will be in my prayers. I believe in the power of prayer. When nowadays technology and advanced medical treatment and even people gave up on things, God won’t give up. With Him and with His Grace, nothing is impossible. I’ll pray the Rosary in honor of our Blessed Virgin Mary to pray for Julianna now. May God’s will be done.
    In Christ,

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  11. This story popped up on my news feed. I naturally felt horrible for you because I knew people would act crazy at your decision, all the while never understanding that they did not have to live each day in a situation where it would only get worse. If someone says that a 4 year old cannot understand death because a doctor so and so said, then how can a 4 year old be a genius? Because not every child is the same. If you ask my 4 year old son what death is, he wouldn’t even look you in the eye. He has Autism which means he is not like most kids. Just because Julianna has lived a life that most 80 year olds have never even lived doesn’t mean she can’t understand death. I hate that she has to find about death because she is sick, but she is highly intelligent for her age and I think she is fully capable of making that decision. I have had friends that couldn’t take their pains and they chose a different way. This girl is more brave than most adults. Prayers and love sent to her, her parents, and Alex. God Bless.

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  12. My hearts hurts for you all. I am a mother of two children as well and I could not even start to understand the decisions you have to face. You have an angel watching over you all and little Julianna is so brave. I do hope and pray that her wishes are fulfilled and that she will join God and all of the angels in her own way and on her terms. You two are wonderful parents and I agree with all of the choices you have made no matter how hard they had to be. You have love and support in Oklahoma and I want to thank you for sharing your story. Your little angle will fill your hearts forever and she has touched my heart forever as well. Try to stay strong and just cherish every moment with Julianna.

    With love and a heavy heart in Oklahoma,
    Brandye

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  13. When our son was in final stages of brain cancer we discussed death. I asked if he was afraid. He said no cause everybody has to die sometime, and I’m right with Jesus so don’t worry and don’t be sad.

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  14. May God bless her and gave the family courage to bear all this pain. She is a angel

    O Lord please save her and she get 100 % recovered,amen

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  15. Hi I am from the Philippines and through CNN I was able to read about Julianna. After reading your story and through her, I was convicted by the Lord. Here is a beautiful child whose faith is greater than mine. She has a strong heart and a faith like Ive never seen before. Thank you for sharing your story. Me and my family will always pray for Julianna and your family. May God sustain and bless you. In Matthew 19:14 but Jesus said, “Let the little children come to me and do not hinder them, for to such belongs the kingdom of heaven.” Rest assured that God will always be there for her and your family. God bless.

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  16. I also read your story today on CNN and it touched me so much. My greatest fear is having a child die young. I had two sisters die of SIDS as infants and I saw first hand how difficult it was for my mom. But I saw the immense strength she found in her faith in God and our Savior Jesus Christ. And I find in Him the same wellspring of grace. What a wonderful mother you are to such a special daughter to help her learn and internalize such faith at such a young age. I think we frequently do not give kids enough credit for their understanding of the the most important things in life, and Julianna clearly understands that this mortal existence is not the end of her life, but merely a small part of it. I pray your family finds all the strength and grace you seek for as you honor your daughter and her beautiful life.

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  17. I just wanted to say that ONLY you as the mother can tell if your child is suffering. Don’t you worry about anyone speaking negative about your decision. Your daughter is beautiful and listen to what she’s asking. I for a fact know my son is RIP and I also know he was suffering and the quality of life he was having wasn’t a good one. We love you and your daughter and respect your decision! Lots of love sending your way!

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  18. Hello,
    Like others, I saw your story on CNN and was touched. You obviously don’t know me, but I wanted to send you a note of encouragement. I can’t even begin to fathom what you are going through. My wife and I are Christian parents to a biological son and two adopted daughters. I hope we would be able to have your faith and courage if we were in your shoes. I know that others question your decisions, but apart from God, you know your daughter better than anyone else. (And is sure appears that she knows God!) Trust yourselves as her parents, and trust God for the wisdom to make the right decisions. He clearly has and will continue to use Julianna to touch lives and bring people to Him. What a lasting and eternal testimony! You will be in my prayers. May God continue to bless you and your family.

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  19. I read your story on CNN. Very moving.
    I’m not a typically “faithful” person but do believe/know that we simply go somewhere else when we die. I’m absolutely sure your daughter understands this innately. Listen to her – it is her decision.
    Don’t let people pull you down, or let you lose faith in what is right, natural and Julianna’s decision.
    You are great parents – all the greater for letting Julianna decide how she wants to leave this life.
    God bless.

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  20. Hello,
    The article on your daughter was shared to me by a friend. It brought me to tears as I read about the amazing amount of strength your daughter has as well as the understanding that God in Jeaven loves her and will take care of her. You as well as your husband and son are strong as well, and that is a tough thing. I live in Portland Oregon as well. I am an owner of a princess party company and would love to be able to come visit your daughter to help brighten her day or do anything else we can to bring some magic and happiness to her. If we can’t do this in person, i would love to FaceTime or Skype with her. Anything my team and I could do to bring a smile to her face as well as the entire family. Please let me know. Your all in my thoughts and prayers. Please know and remember that God knows and loves us all!

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  21. I was so moved by your family’s story and struggle. I hope that you have great support from family and friends. Your daughter is incredibly brave to choose death with dignity. Plain and simple. She may only be five years old, yet all day and everyday she is painfully reminded how close she is to her end. To some, choosing death may seem premature and unethical. For others, choosing death is the most peaceful and respectful path. Even if your daughter did not completely understand death, it does not matter. She knows what her life is like in her body and she is fully aware that she cannot live without intensive and invasive medical support. I doubt that there are many adults who would try as hard as your daughter to stay alive as long as she has. It really looks like your family has done all that they could and your daughter has done the same. Your daughter is ready to let go and die with peace and love in her heart. I pray that she goes peacefully and that your family continues to cherish and remember her.

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  22. This is a good message from God to all of us , How child & parents cope up this coureges sitiuation. trust in God all thing happen God wish, Leave to God & grow you faith in every second. Dont worry God blessing will pouring for you. God Bless you & your family- from sri lanka

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  23. I read the story about your amazing daughter and your beautiful family on CNN. Thank you for sharing something so personal and painful with the world. In today’s society many are uncomfortable about death and they do not want to hear about it or think about it, especially when it involves a child. We fear what we do not know. By sharing your story you have helped me (and maybe others) to think about my own mortality and that of my loved ones. It helps me to think about what is really important in life and that death does not have to be feared. When I look up to the stars at night I will think of your daughter, when I see a beautiful flower I will think of her, when I see a eagle in flight I will think of her and her spirit. My thoughts are with you and I will carry your daughter in my heart.

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  24. May the Grace of the Lord bless all of you. I have a little daughter like yours and through my window view to the world as parents, I share all your feelings for your daughter. God bless you. As I write

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  25. As a non-believer, this story has touched me in a somewhat “spiritual” sense. She is a a beautiful being, a true gift of life. I hope you have found inner peace within you coming to terms with such a difficult decision. Do know this: it is not you making the decision, it’s just you embracing it. May love, happiness and joy rain down upon you all . . . and may she be carried away in a beautiful , serene and glorious moment.

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  26. Michelle, thank you for sharing your story. You and Steve are blessed with such a beautiful family! You all are touching countless hearts. Bryan and I are praying constantly that God will keep His arms wrapped tightly around you and your precious ones. Love to you all.

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  27. You and your family, especially your sweet daughter, are so brave. Anyone who criticizes you is ridiculous. Your faith is amazing. She will be in Heaven waiting for you. Prayers to all of you.

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  28. i am a nurse and commend you for your decision of allowing her to choose. Get heaven is for real the children’s version. It’s awesome….and written where she can understand. Prayers for you all… Make the most out of each moment… And make as many memories as you can . I know you will be together again one day. And that baby will be pain free and no more suffering….

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  29. Julianna family,

    May God bless you with strength and peace. I can only imagine what your family is going through. When God decided to send your family Julianna 5 years ago, he knew this day would come and she would be strong in her faith with God and strong for all you guys.

    Stand faithful and God’s got her back and yours!

    In His Name,

    Melissa

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  30. What A Terribly Brave daughter you have! What! Terribly Brave Parents you are!
    My heart is with you and your family. The Good Shepherd will surely hold HIS little Girl in HIS ARMS as HE takes her home when HE sees all is ready.

    Thank you for your HUGE and LOVING Hearts.

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  31. What a courageous little girl; I pray that God continues to bless your family. I know that you are grateful for every second that you have with your angel in your mist. The bible says “to be absent from the body, is to be present with the Lord”. Thank you for unselfishly sharing you journey. God bless you

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  32. I read your story on CNN and I can’t tell you how moved I am. My husband and I are facing some tough times ahead, but your story has really put things into perspective for me. Your family, and especially Julianna, will be in our prayers. God is with you, even though I am sure sometimes you wonder about it. The Father is in Julianna’s heart and she knows it. I pray that He gives all of you strength and guidance. I pray, too, that my faith becomes as great as Julianna’s. What a wonderful, beautiful and loving child she is! God be with you.

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  33. I cannot fathom or comprehend what you are going through. I have not read any of the other comments or negative remarks people have left. Sweet baby girl going through this my heart goes out to you. You are such a strong, brave beautiful Soul. Many people will go through their lives not knowing anything about life. Doesn’t matter how long you’ve lived, or what you’ve done on earth that makes you a better person, people live many years and go through life and are heartless and cruel leaving negative comments. I support you. When you are close to leaving this Earth people don’t understand that your Soul is ready no matter what age. I do believe that a child can make that decision for they have seen death lurking at their door just waiting, waiting… When you are close like this sweet child to leaving this Earth your mind is different, you think differently. You don’t think like a child because your body has gone through so much hell your brain waves are different, you think differently, you’ve seen things because you have been very close to several times leaving this Earth. Only your body will die sweetheart, none of our bodies are permanent its just a shell. Your soul will live on forever as its done even before you were even born, just like our Ancestors. God has a destiny for you, Heaven is a place where our souls go when our body dies, souls hang out there and wait for their loved ones when their time has come. Your Family is a strong one. You are very blessed dear child. You will meet them again someday. It is not the end only the beginning of something so much more magical!! God Bless you and and your Family. Lots of love sent your way.

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  34. Thank you so much for sharing your story. Children are not stupid, particularly children with chronic illnesses, they know much more about their condition than adults wold like to believe. I know because besides being a mother to a child who suffered a life threatening episode and a teacher, I have a complex set of cardiac defects that could kill me tomorrow. I remember being younger than Julianna and realizing I was not being told everything about my condition. That’s why we learn to read our medical charts, often without the knowledge of ANY adult. I have no doubt Julianna is fully aware of her condition and what it means for her. To allow her to have control over her fate is the greatest gift of all. You are exceptional parents and do not ever let anyone tell you otherwise.

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  35. So touched by your eloquent and honest writing. Julianna is an incredible brave sweet girl. If reading this breaks our hearts, brings tears to our eyes and rolling down our face, I cannot imagine the pain you feel as her parent. We are all there holding your hand and surrounding Julianna with love. Trust that you are giving your daughter and your family the greatest gift in doing what is right for Julianna. No one should judge another parent. They cannot know the agony of this situation unless they have lived it. Thank you for sharing your story.

    Sending you peace

    Jessica

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  36. Hi Michelle

    My heart goes out to your family and at the same time I salute you. Juliana sounds like a lovely little girl. One with a big giving heart, courage, amazing intelligence and strength of character. As parents you have helped develop these wonderful characteristics in her 🙂 after reading your story I wish more parents (myself included) could be more like you. In many ways you are giving her the greatest gift you can despite the pain it will bring you. I also admire the way you are helping your son deal with it, you haven’t left him out either. God bless. Sending love and light your way.

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  37. I just wanted to write and tell you how touching this story was. I like many others I’m sure cried reading this. I understand and think you are really good people for standing by your daughter about her decision. She may be four/ five but having an illness like she has matures you quickly I think. I will pray for Julianna and your family and I pray for the period between illnesses is long.

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  38. Dear Michelle and family, my name is Bernadette Scarduzio and I have Charcot Marie Tooth disorder! Reading your blog, and hearing Julianna’s story has touched me profoundly! Words cannot express the emotions that I feel when I read about your struggles and hard decisions! I would love to meet Julianna…. She is my hero child and an angel on earth. I want her to know how much she has inspired me to keep up the fight for awareness of this debilitating and terrible disorder that we both live with. I live in Philadelphia PA, maybe we can Skype because I know how sick she is and germs is a big factor. Thank you for sharing your story with the world as did I a few years ago. There is a documentary out about my life living with Charcot Marie Tooth called “Bernadette” http://www.Bernadettecmtmovie.com
    You are not alone in this fight! Please find me…..
    ❤️

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  39. Michelle, I just read your story on Slate. I usually don’t respond to articles I read, but this one just grabbed me. I want to first say how sorry I am you are going through this. Of course it’s hard to lose a child, but to be faced with this decision must be unbelievably hard. Secondly, and more importantly, please know that I support whatever your decision is.

    Some critics apparently say that it’s wrong to let a 4-year-old make such a choice. What I don’t think they realize is that you haven’t simply left the choice to your daughter, but her desire is certainly something you have (and should) consider. Indeed, all of us do that with our kids – see what they want, but ultimately we as parents make the choice. Most of us just haven’t done so in your situation.

    Your daughter is a beautiful girl, and you all are obviously a close family. I’m praying for you and wish you all the support and strength possible. Stay strong.

    Warren

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  40. First of all, I want you to know that I’ve lost a child — an adult child — but a child nonetheless. Not to mention that she was very sick for the last 14 years of her life. So I know what it’s like to lose a child. Secondly, as for those who say that a 5-year-old is not capable of making that decision — she is. Does she FULLY know what she is deciding? Probably not. But, if nothing else — and I bet there is a lot else — she is saying that she is through with being ill. And that should be good enough for anyone. I myself truly remember when I was four and realized that the world extended beyond my neighborhood and the main street of my small town. I also vividly remember, riding in the car with my parents — it was my 5th birthday — and they asked me how it felt to be 5 years old. I told them that it wasn’t any different than being four. 🙂 And I am now 67 — so 5 was a long, long time ago. What I’m saying is: small children have a level of understanding, awareness, comprehension that we don’t tend to give them credit for. As difficult as I know it will be to be without your daughter, I fully support your decision to support her decision. And do know that, as time goes by, it will become less and less painful. You will never, ever forget her, of course, but the pain will become less and less acute as the years go by. You both are young. Your lives are far from over yet. There is so many more good things that the future will bring. You’re all in my thoughts and prayers.

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  41. Dear Michelle (and Steve)

    I just read about Julianna in CNN and am still in tears. I believe Julianna knows and understands well her situation and has chosen the ultimate Kingdom for her to be a Princess forever. And as heartrending as it is, your heroic decision to let her go is love itself. May God bless you and be with you.

    Have you heard of Antonietta Meo? I prayed for you all but now I will pray specifically to “Nennolina”, her nickname, to welcome Julianna in Heaven and be her guide. “She was diagnosed with osteosarcoma, an aggressive form of bone cancer, at the age of five after she fell and injured her knee and the injury didn’t heal. When her leg had to be amputated, she bore the ordeal “cheerfully.” She was fitted with a heavy, artificial leg so she could keep playing with other youngsters. Catholic theologians have called her a “mystic” because the six-year-old wrote “extraordinary” letters to Jesus Christ in the last months of her life that displayed understanding and actions beyond the normal for a child of her age. “Dear baby Jesus, you are holy, you are good,” she wrote in one of the letters. “Help me, grant me your grace and give me back my leg. If you don’t want to, then may your will be done.”[2]https://en.wikipedia.org/wiki/Antonietta_Meo

    Thank you for being a sign of love and hope, in sharing your inmost heart and soul. You have our love and prayers.

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  42. Julianna – just looking into your eyes makes me smile. You have touched so many and at such a young age you have taught us to understand and accept. We will never ever forget you and your family. We love you so very much! Continue to be in our prayers Julianna.

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  43. “What eye has not seen, and ear has not heard, and what has not entered the human heart, what God has prepared for those who love him” 1 Corinthians 2:9

    Julianna will soon be all better.

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  44. Michelle, I want to share with you this poem, and pray that in some way it helps.

    I’ll lend you for a little time, a child of mine, He said. For you to love while he lives, and mourn when he is dead. It may be six or seven years or twenty-two or three. But will you, till I call him back, take care of him horrible me? He’ll bring his charms to gladden you, and should his stay be brief. You’ll have his lovely memories as solace for your grief. I cannot promise he will stay, since all from Earth return, but there are lessons taught down there I want this child to learn. I’ve looked the wide world over in my search for teachers true, And from the throngs that crowd life’s lanes, I have selected you. Now will you give him all your love, nor think the labor vain, Nor hate me when I come to call, to take him back again? I fancied that I heard them say, Dear Lord, Thy will be done. For all the joy Thy child shall bring, the risk of grief we’ll run. We’ll shelter him with tenderness, we’ll love him while we may. And for the happiness we’ve known, will ever grateful stay. But shall the angels call for him much sooner than we planned. We’ll brave the bitter grief that comes, and try to understand.

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