One Year

My sweet Julianna,

It’s one year today – your heaven day. This is what I’m choosing to call it, because this is the most important part of June 14th. It’s bigger than my sorrow and shock and pain.

I know you are free now, and gloriously happy — even happier than you were here. Happier in a way that I can’t really imagine. Your body doesn’t hold you back anymore, and you can run, jump and play. I think you are playing with children now. (We adults did our best, but it’s just not the same…) This does my heart good.

I miss you – so much. I know that you didn’t want me to be sad, but I am still bound by this world’s limitations. Better me than you 🙂

You taught me that happiness and heartbreak can coexist, so today I will try for happiness.

 

I’ll wear pink, and I will play with Alex.
I’ll seek out beauty in everything and everyone.
I will be honest but kind.
My hair will be neat.

Most of all, I will be thankful. I got to be your mom. Nothing can take that away.

Until I see your sweet face again,
With a zillion billion kisses,
Mom

 

j2

Photo: Jennifer Rialtos

 

My thanks to CNN for publishing a piece I wrote about our hospice experience. Because we started following Julianna’s example, we had eighteen beautiful months. She gave us the courage to face our greatest fear.

 

 

18 thoughts on “One Year

  1. Ah yes……..the first anniversary of her Heavenly birthday. We cannot imagine the contradiction of feelings: yes, she really is playing and running and the happiest she has ever been, but the “missing” is a very heavy Cross to bear as a parent. We are resting assured in our Faith in our Father that His Promises to us are true and gentle and joyous. One day, we will all be reunited, and see each other face to face, be able to hug and hold each other forever, and realize that the world was but a blink of an eye compared to the profound joy of Eternity. Julianna is lovingly and patiently waiting, for she has been given the Promise. Michelle, may God bless you and your entire family, as well as all those who have walked this path before, and those who will walk this path in the future.

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  2. Michelle–sending all of you hugs across the miles! Just got done reading the CNN article and your post here. Just seeing her picture made my own heart hurt so I have no idea how you all are coping.
    Thank you again for sharing Julianna with us.

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  3. To see Julianna’s beautiful face makes my heart warm. I read your post on CNN as well and it was so touching. No matter how long it’s been, when I read your blogs it still seems so fresh and always brings tears to my eyes. I love how happy and loving she was and that she is free now gives me the most joy. Losing is child should never happen and I cannot imagine what your going through. I know you and you family gave her the best care and love, anyone or doctor can give!! Thank you Again for sharing a Julianna with us , she is truly a blessing. I read Julianna’s book to my daughter and she just loves it. ( she is 3) god bless you and your Family 💞💞💕💕💐🌺🌸💜

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  4. I loved this post today! And, for the first time, I read your CNN article. Simply AMAZING. There are no words to describe what you did so perfectly and eloquently. I really think you have a gift and could share so much with so many people who will have to face letting their loved ones go…at any and ALL ages, actually! Thank you so much for your bravery and vulnerability in sharing Julianna’s life with us. I continue to learn and grow from your posts. Thank you a million times. Now, go have fun and play with Alex!

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  5. Great article on CNN, terrible circumstance. This must have been a tough year, I can hardly believe it has already been a year and yet for you it must feel like an eternity. Juliana continues to be an inspiration for me and I continue to prey for your family.

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  6. I am sorry for your loss. Thanks for your article and your blog post today. I found the article on CNN while eating lunch at my desk at work today and I think my co-workers think I am weird because I am sitting here sobbing quietly. You see like you I also had to enroll my daughter in hospice. In Aug of 1999 my wife and I made the impossible decision to place our 10-year-old daughter in hospice. Tyler died in Feb 2001 of mitochondrial disease. Reading your article made me think of so many memories of feelings exactly like yours. “I wish it was me”. “I must be such a failure”. My wife and I met some wonderful doctors, nurses, and volunteers from the pediatric hospice in my city – several are life-long members of my extended family now. Thank You!

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  7. Hugs to you and your family. As others have said here, we love and miss Julianna, too. She always made me smile. Through your writing, you make me cherish my family and hold them a little closer. Thank you.

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  8. Hi Michelle, Steve and Alex! I hope you are all doing reasonably well!
    In reading the article from the web page, i found one of the slides uncomfortable. I think it was the first slide that read “Painful treatments that weren’t likely to save her”- That is not right– the treatments had zero chance of saving her. It was a situation that outsiders do not know every detail and could never fully understand.
    I am actually surprised that you write the blog and your instagram page, Michelle. I have seen a very lot of loss before, and a common theme is that very shortly people do not talk about it. Like when the towers fell in nyc- after a while there is an unwritten code that says not to bring it up. Or a town leveled and 161 people died in Mo, no one from that town talks about it, tweets about it. It really shows an uncommon intelligence and wisdom Michelle, you sharing with others. You are literally the most intelligent writer i have seen.
    So on a one year mark the mind has had a lot of time to process the loss. Julianna’s legacy is one of uncommon spirit and love. That little girl warms hearts long after her passing, and that is something truly amazing.
    Perhaps one of the best ways to honor someone’s memory is to try to recover emotionally to the place she she helped you go to, the person she helped you become when she was at her best. Julianna wants her family to remember her of course (she even said so). Without the slightest doubt or hesitation anyone will tell you that Julianna wants you to be happy, and that she is so very proud of you. That is, however, something that you must feel in your heart in order to become real. I have the feeling that You, Steve and Alex will encounter very special moments for the rest of your lives. You know, very special moments that perhaps can not be explained- but you know that Julianna was looking over you.
    Before the week is over, try to smile for J- she is truly free now.
    So as i drink the last of my tea, there is hope in my heart that you three have a wholesome as possible year from now. Be on each other’s side- because although it may seem that you are a team of three, you will always be a of a team of four.

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  9. Thank you so much for sharing the wonder of Julianna and this sacred journey with her. Not even knowing her, I think of her with every beautiful pink sunrise or sunset, I remember to think a bit less about whether I look -through my weary eyes – ridiculous and am, instead much more focused on being joy and wonder-filled. I am more grateful than I can say for the generosity of your sharing your faith and abiding love for each other. God bless and keep you.

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  10. We remember you 🙌🙏💟Julianna💟🙏🙌 praying for your family, for your beautiful hearts 💗💔💗

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  11. Still the most inspirational girl I’ve known, Julianna still touches my soul and my heart, and she still makes me cry and smile. Remembering Julianna each and every day with every pink flower, pink pony with every princess doll, sunrise and sunset. Sending you much love, I know you don’t need hope..because we all know you will see each other again. Thanks for sharing your heart with us

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  12. Thank you, Michelle, for taking time to share your letter to J with us, on this anniversary. Your CNN post was superb. As a Hospice caregiver, I thank you for helping people to understand that Hospice puts an end to the painful, dramatic, usually useless treatments and instead focuses on quality of life with family and friends, for however long there is.

    I so look forward to hugging you and Julianna, in Heaven, someday.

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  13. The pure innocence and honesty that only comes from the strength of the young, your strength and straight up honesty will always be celebrated, not just on your birthday but beyond. Happy Birthday little one, if I can manage just a small part of your strength and understanding it will carry me far. Thinking of you.

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  14. every time I see pink I remember J and her strength, just last week, I walked outside to my garden where I planted a miniature rose plant last year that looked like it was no longer going to bloom, and guess what – PINK roses grew ! I automatically smiled and thanked my grandpa and my other hero, Julianna 🙂 I followed her story long enough to where she is forever in my heart and forever one of my heroes ! She will never be forgotten, thats for sure !<3

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