“Put it on the Blog”

This afternoon, I was summoned to Julianna’s room. She wanted to show me her latest hair creation. I snapped a picture and told her it was adorable.

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J: Put it on the blog

M: Oh my goodness, what have I created? What? Do you even know what that means? What’s a blog?

J: It’s where you post things.

M: And what does “posting” mean?

J: casually – I dunno…

M: Well, I haven’t posted in a while because I don’t know what to write. You can’t just put pictures up.

J: Write “These are Julianna’s sparkle roses.”

Writing is easier for me when life is eventful, when stuff is happening. But Julianna , as usual, is right. Things – and life – don’t always have to be complicated.

So, as per Miss J’s instructions, here are some pictures and some posts. Whatever that means…

FaceTiming her kindergarten class with the obligatory (for that morning) pink koala.

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On the deck with her “nature box.” And obligatory pink ponies.

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J says “This is the prettiest I’ve been.”

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The biggest smile I’ve seen in a while.

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We made it to the neighborhood park! Even though J never left the stroller, she loved being by the slides and the swing.

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Blooming.

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And, because this is a blog about Julianna, we finish with an outrageous and fabulous conversation. It’s obligatory.

J: I wish that there were more princess rooms in the world.

M: Oh?

J: So that every girl could have a princess room.

M: Not everyone would like that. People have different taste…

J: You mean, like bad taste?

20 thoughts on ““Put it on the Blog”

  1. Hi Michelle:

    What a fun post! While you might not want to encourage Julianna by telling her this, I think she’s got the perfect solution to your occasional writer’s block! 🙂 I’m thanking the Lord for the peace and joy that is so evident in these pictures.

    Liked by 1 person

  2. Love the fun post ❤ so nice to hear that Julianna’s days are full of sparkling flowers, time in the park and a spirit that makes all of us smile😀

    Liked by 1 person

  3. As always…Princess J has it going on. I check for new posts frequently – and am glad J has the solution! Pictures that basically “say it all” when you need a bit of a writer’s break.

    Love and prayers to you all!!!

    Janice

    Liked by 1 person

  4. I cannot begin to understand the grief you must have for your wonderful daughter. Thank you for your generosity of sharing her with the world. I pray that her huge presence will stay with you and comfort you always, and that you will see her in roses always.

    Liked by 1 person

  5. What a precious child you have… I say have because she is still your child. I’m so very sorry for your loss. I just read some posts and see what a special girl Julianna is. I’m sure she’s running around up in heaven entertaining everyone. I’m sorry she suffered so very much here on earth. Like you, I believe God made her and knows what He is doing. God doesn’t make mistakes. May it bring you comfort to know she is happy and healthy and that you will see your brave delightful beautiful fun girl again and when you do, there will be no more tears, and it will be forever. Sending love and prayers. Gabrielle

    Liked by 1 person

  6. I’ve never posted anything on a blog. You don’t know me & this feels odd, but I am compelled to say something. You are amazing parents and your daughter was an amazing soul too. May she rest in peace and may love and peace follow you everywhere you go. How I wish adults were as mature as she….

    Liked by 1 person

  7. My heart goes out to your family. I know this decision was difficult and I think you were right to include her in the decision. Your conversation with her was a great one. You are blessed having had her in your life and know she will never be forgotten. What a brave little girl with brave parents. Disregard the nay Sayers as no one knows what’s is best decision except the parents, after all she is your child. We both know she is now in a place with no pain and legs that can walk and play.
    Find comfort in knowing you made the right decision..

    Liked by 1 person

  8. Dear Alex, Michelle, Steve and extended family,
    My heart aches for all of you. I know you are the best family Juliana could ever have. No one could have loved and cared for her better than you. As a retired neurologist who had one son die of a congenital disease and another (3 year old) son who grieved losing his brother, I have a some idea of the anguish foisted upon you by other people’s, including “experts”, biases. My hope for you is that you will be able to express appreciation and support for one another so that the irrational self-doubt, guilt and despair that can poison and prolong grief never takes root.

    You have my unwavering admiration and support.
    Sara Langer
    MInneapolis, MN

    Liked by 1 person

  9. I first read your story when I was in Switzerland last year and now I got this very sad news when I am back home in the US. You had a brave daughter and you, are a brave mom. I know Juliana wanted to see you smile and your true happiness can truly make her free. Really sorry for your loss. I feel she was also part of my life.

    Liked by 1 person

  10. Michelle and Steve – you are “phenomenal” parents. My heart goes out to both of you, your family and your son. My condolences and sympathies on your deep, wounding loss. My respect on making the life of your daughter on this earth … a most wondrous time while she was here. Your faith is extremely admirable and the fact you were able to imbibe that into your daughter shows so much more. We all try as parents to love, care, play, work, provide and give to our children. But you have done so…with such love and respect I just wanted to express my admiration on that aspect. I can only hope to step up to such a level as a parent. I can only pray that my daughters will not be stricken by such a debilitating disease. Again, my deepest condolences and sympathies on your great loss. Heaven is a greater place and wiser place – earth much less so. Thank you for sharing.

    Liked by 1 person

  11. Steve and Michelle, I have never posted on a blog, but felt compelled to after reading all 3 CNN articles yesterday and your blog today. I am so sorry that your family will no longer have Julianna’s presence in this life – she was a beautiful, special girl. From her and your statements, it is clear that the Lord has watched over her, and guided her and you. Moreover, the Lord is sovereign and our Good Shepherd, so he surely guided the decision-making process – so I hope you never have doubts. The Lord has finally brought her to Him, and she will be waiting for you all – so no matter what trials you go through for the rest of your life, you can know Julianna (and of course the Lord), will be waiting for you when you leave this side! Finally, thank you for sharing, for in Julianna’s story, we can see the great love of God, – it seems clear that He was with her until her last breath, and now forever more.

    Liked by 1 person

    • Dear Michelle
      What a heartbraking, but inspiring life to read about. I can not even begin to think what you and your family went through with Julliana. I know that Julliana’s going Home must have left you devistated, but what I have read has proven that you are awesome parents who trusts in the Lord and unselfishly decided not to prolong her suffering. Knowing that she is safe at the feet of Jesus must give you a peace that only people who has a relationship with God, can understand.
      People who are judging you, can not know what it is like to live with pain everyday. Have not experienced what it is like to see a loved one in pain, not being able to help. Going through what you have gone through and trusting in God, believing He knows better than any person on earth is an awesome testimony. Keep your faith and your eyes focused on Jesus. When it is your time to go Home Julliana will be waiting at the side of Jesus for you. I am praying for you, Julliana’s dad and brother. If she still has grandparents I am praying for them as well, because being a grandparent is one of the most amazing gifts God can give a person. Thank you for sharing your most difficult journey on earth. When it is my time to go Home I will be sure to ask Jesus to show me where Julliana is playing, because I want to meet one of the bravest little girl’s who changed people’s lives without ever meeting them.

      Liked by 1 person

  12. Dear Michelle
    What a heartbraking, but inspiring life to read about. I can not even begin to think what you and your family went through with Julliana. I know that Julliana’s going Home must have left you devistated, but what I have read has proven that you are awesome parents who trusts in the Lord and unselfishly decided not to prolong her suffering. Knowing that she is safe at the feet of Jesus must give you a peace that only people who has a relationship with God, can understand.
    People who are judging you, can not know what it is like to live with pain everyday. Have not experienced what it is like to see a loved one in pain, not being able to help. Going through what you have gone through and trusting in God, believing He knows better than any person on earth is an awesome testimony. Keep your faith and your eyes focused on Jesus. When it is your time to go Home Julliana will be waiting at the side of Jesus for you. I am praying for you, Julliana’s dad and brother. If she still has grandparents I am praying for them as well, because being a grandparent is one of the most amazing gifts God can give a person. Thank you for sharing your most difficult journey on earth. When it is my time to go Home I will be sure to ask Jesus to show me where Julliana is playing, because I want to meet one of the bravest little girl’s who changed people’s lives without ever meeting them.

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  13. I just came upon this post. Wish I’d seen it earlier, but for now – hahahaha that’s hilarious (& very sassy!) @ the comment om “bad taste”. And I mean like – well, yes. The opposite of not having the same tastes kind of IS bad taste (much what I would say to anyone who doesn’t like chocolate or mint or cake or Disney ..), but “bad taste” doesn’t always look like not wanting a princess room, hahaha!! (Or maybe it is. But if so, which I doubt, I’m not admitting it. :p)

    Julianna’s sparkle roses are very good! (I loved that series of photographs. Clearly reaffirmed my belief that Julianna is a sparkly blooming flower. Yes) & I’m sure Heaven has lots more sparkly roses … and maybe even a princess house, not room.

    Hugs & more hugs, may these pictures bring you the assurance that she ended her life well, with flowers & sun & so much sass and pink things – such precious memories. ❤ Sounded like a pretty fun week until the nasties that stole her away 😦

    Liked by 1 person

  14. Hi Michelle, I’ve read your story of your little princess and it shook my heart. I have a little 6year old girl who like your daughter sees the world in rainbow color. Nothing is ever wrong and loves all and fears none! Kids are superheroes after all…. That’s what makes them children they don’t fear what they can’t understand. I don’t think it’s right for anyone to dictate or criticize the decision you made about your daughter because no one understands unless you’re there. All I know is that I’ll keep you and your family in my prayers and even though we don’t know one another we are binded by the love of our children. Bless your little princess!!

    Liked by 1 person

  15. This is a heart breaking and at the same time inspiring blog. Your time with J was amazing as shown by your conversations and photos. I am honored to share your journey in a small way. Blessings and peace to you and your family. Lori

    Like

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