This is the letter I read to Julianna at her Tea Party Celebration of Life. I am usually a nervous (i.e., avoid it like the plague) public speaker. This time, it was not an issue. (J would have said “Don’t freak out!” or “Relax, princess.”)
As I wrote this letter, I felt her presence and the peace of God.
17 June 2016
Dear Julianna,
My darling girl, how I miss you. I can’t believe you are gone.
I sit here in your princess room, in the familiar chair. It has all of your things, the stuff I once thought of as clutter and now consider treasure, because you loved it all. If there is a way to truly love inanimate objects, I believe that you did, because your love is just that strong.
I knew this day would come. I tried to deny it for the longest time, but I knew, early on, that my time with you on earth would be way too short.
Even before your CMT declared itself to be the beast that it was, even as we planned a long life with adapted everything, I worried. There was this gnawing fear that I tried to shove deep down.
You see, I believe that children whose time on earth is short are special. It’s not just a platitude, or something I say to make myself feel better. It actually made me feel awful. I recognized very early (after the nasty colic stuff went away, that is), that you were not an ordinary child. And it scared me.
What kind of a child never feels sorry for herself? Or refuses to pick favorites because you don’t want people (or things) to feel left out?
I described it this way in an e-mail I wrote in October 2014:
If you have been around Julianna, you know that she is one of those kids – her spirit is incredible and resilient, and she is wise beyond her years while being delightful and funny at the same time. She is exceptional.
I recognized this, and it scared me. If it had been up to me, I would have made you more ordinary, so that you could be with us longer. It’s selfish, and not very wise – but it’s the truth. That’s how hard it was to imagine a life without you.
So now, we are here. I was right to be afraid of this, because it hurts – more than I can describe, or even think about for any length of time. That’s the price I pray for loving you so much. But it’s OK, because the love you gave me was epic. I’m still coming out ahead – by an enormous margin.
And this, my sweetheart, is your greatest gift, your legacy. More than anything else, you loved. Your love was so expansive, so thorough, that it gave you a lightness and joy that was other-wordly.
You said it best, darling girl. Love is a superpower.
Just look at what it’s done:
- It made an introvert bare her soul to the world – via CNN.
- It let a little girl who had a hard time just going out of her princess room be known — by the world.
- It made the laconic very, very verbose – this would be Steve, in a 1,115 word-count FB post about Making a Moment.
- It makes converts out of pinka-phobes – because it was your favorite color. (Steve again…)
And love is the only thing that is powerful enough to get us through life without you: God’s love, manifested so obviously in every fiber of your being. You took His greatest gift and shared it with all of us.
Love is a superpower. It is the reason and the answer. It keeps broken hearts beating; it turns judgment into kindness, fear into courage, grief into joy; despair into hope. It is the greatest.
My sweet Julianna. You have taught me so much, but this is your most important gift: that the thing I feared most has happened, but I will survive. Because of your love.
You will always be my baby.
With all my love, and a million zillion kisses – until I see your beautiful face again…
Heart,
NOTE: Julianna’s Tea Party will be featured on Anderson Cooper tonight – 8P EST.
Julianna Yuri 
“Epic” is such a good word…
Love IS a Superpower.
I also think Julianna would tell us that she left us with Alex to carry on the Superpower of love, in his own way, of course.
Thanks for the heads up on Anderson Cooper. 💜
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Totally.
If Julianna doesn’t go to Heaven by herself (& brings people with her) – – – who then will be left on this side of eternity to carry on the legacy of her Superpower of Love?
She must be having great conversations with great-grandma now, sitting on the front street of Heaven chatting about how eager she is for the day that her family will join her. :’)
But until then – it’s up to our little ninja warrior to continue on his baby sister’s legacy, for Steve & Michelle to continue sharing the love that Julianna had, and passing down the superpower of Love to all who knew Julianna, and all who know their family now. We miss you dearie J, but we know that God will, & is, taking care of you 😘
❤ x
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So much about this made me cry. “If it had been up to me, I would have made you more ordinary, so that you could be with us longer. ”
No words could possibly suffice. My heart hurts for you. Thinking and praying for you often.
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Your baby truly touched the world with the way love and joy was a part of every thing she did. My heart hurts just thinking of the void she has left. Sending love and prayers your way.
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Love is a superpower. In your darkest moments remember that, everyone.
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Thank you for sharing your daughter and yourselves with us. Julianna may have been a bright light that shone for only a short while but those of us who came to know her will never be the same. She has left an indelible mark on us all. May you continue to find comfort in your love and memories until you meet again heaven.
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Love is a superpower. In your darkest moments remember that, everyone. Love is forever.
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What a beautiful tribute to a sweet soul. I feel like I got to know you and your family through this blog, and my heart aches for your loss. But I am so honored to have gotten a glimpse into the life of such a wise soul as Julianna.
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I have no access to a tv..any chance someone can tape Anderson Cooper ? (The Julianna part ) maybe a YouTube upload?
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Thank you once again Michelle.
Your tribute to Julianna is so true and so heart felt.
It’s been an extraordinary journey from hospital to heaven for the world’s Big little girl who we have learned so much from and love so much. I know she’s happy, very busy in heaven and smiling down on all of her family, friends and followers. She remains on my mind and in my heart each and every day and always will!! : )
Thanks again,
Valentino
Monday, June 20, 2016
5:35PM
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My heart aches for your grief and my prayers are with you. Julianna was and remains a precious gift from God, shared generously and courageously with the world by you. Thank you. Thank you.
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Ms. Moon, so very powerful this entire experience has been for those of us whom you let observe and share along with your family. I also feared this time when J was no longer among us. It is so very difficult to explain. I lack the vocabulary to describe the moments of fear, then joy then fear again. Strength and weakness both apart and together. The moment began with the words ” Dear Friends…” and my heart sank. I knew that J had died. (this is the first time I have used that word to define a moment most feared). I hate death. As I thought on the past year and a half, or so, it occurred to me that this event from start to finish was real. True reality. Truth. Thank you for letting us in your ‘Living Room’. dan knight
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My heart hurts for your family. We are all hurting for you and enveloping you in love.
Kathy
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Dear Michelle and Steve,
First, I am so deeply sorry about your loss. Julianna was a beautiful soul. I believe her legacy and story will live on. Thank you for writing about your dear baby girl. I can’t imagine the pain, but thank you for the hope she has brought to other people.
I read of Julianna’s story last year when it was on CNN. I read, fascinated, unaware that CMT would appear in my life the following February. My sweet, wonderful, handsome, athletic, strong boyfriend has CMT. He told me on February 18, 2016, 6 months after we started dating. Coming to terms with this fact has been … difficult. Beyond difficult.
Your story has touched me personally. Julianna was beautiful and I have pored over this blog and have loved and cried over the stories of this amazing girl. She will not be forgotten.
Thank you so much for sharing.
Katie
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Thank you, Dr. Moon.
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Love is a super power and Julianna will always be your baby! I feel overwhelmed by her greatness. Sorry you have to survive this pain.
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We just watched CNN. The story was a beautiful tribute to Julianna and the Superpower of Love. My heart is broken for you and your family. My life has changed since the moment I started following your blog and Instagram. So blessed you shared your Julianna with the world.
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Michelle, you, Your husband, your little boy…. Please… Take a momen to pat yourselves on the back. You 3 have been through so much. I saw Julianna smile ….. Really smile…in three photographs , where she was next to each of you. You have been through an extremely traumatic event, and each of you three are so beautiful and awesome… I just want you to know that I deeply respect you, and I deeply love each one of you. I have been there…I assure you i know how it feels. Each day is tougher till something inside allows your mind to accept what you can not change, accept what is not your fault. The pain never goes away but I truly promise you that it will hurt less once you accept things as they are. i love all three of you. There are no words that one could say to really help you, i know that, you know that. I am going to try anyway. I will try to remind you that through the grief, please realize you were all so beautiful to Julianna. Realize that you comforted her. Realize that you accepted her even though she was disabled. You made her feel loved. You made her feel normal. So through the grief, please please try to realize how much joy you gave her. Somehow, somewhere, Julianna is there, and she is no longer disabled, she is no longer in pain, and she will love you forever.
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There is a joyous pain in reading your posts, not because they are difficult to read, but because the love felt in your words, is almost unbearable. I still cannot fathom that Julianna was called Home, it just has not sunk in yet. But one thing we all know…….His Love and Grace and Strength is with you, as Julianna is being held in His most loving Arms. And she will patiently wait for all of you, as she prepares for THAT tea party to be of the most awesome magnitude! May the peace of our Lord and Savior, Jesus Christ, be with all of you; you are in our prayers. God bless!
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Oh, I am so very sorry for your loss. Julianna was wise beyond her years and has blessed us all with your wisdom. I’ve been following your story for over a year now, but took a week away from the blog only to come back to your loss. My own twin daughters’ birthday is about 2 weeks before Julianna’s. They live in heaven now, too, as does my son. One of my daughters is the only baby who survived pregnancy, passing away after birth. I don’t know exactly what you believe, but I picture it a beautiful place, where all the children gone too soon play together, free of physical and emotional pain, waiting patiently for the day we reunite with them again. You communicate your love for her so beautifully. It was clear how deeply she loved you, too. You are all, as always, in my prayers. God bless.
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My heart breaks for you and for your family. I am so sorry. I will always remember Julianna.
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Michelle,
Thank you so much for sharing this precious letter. The video posted that was shared at her tea party was beautiful. I loved getting to hear her voice and see the look on her face when she came home to the decorations.
Love is indeed a superpower. What a wise and prophetic statement.
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Wow.
This made me giggle & smile, & yet miss J all over again. So very much. I think mostly … it made me be blown away all over again how a tiny girl could have such a big impact on the world. Yes, I can totally imagine J having told her momma to “relax, princess!” on reading this to a crowd. & converting a pinka-phobe sounds .. potentially momentous, hahaha wow! But then again, it’s .. Julianna. & her daddy. I would think he would have done ANYTHING for her, anyway 😌❤
Sending you enough hugs & kisses & rainbows & sunshines & ponies till your family meets J again, heart ❤
This is a very beautiful letter, J would have approved. xx
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For anyone who missed the Elizabeth Cohen video on Anderson Cooper’s show:
http://www.cnn.com/videos/health/2016/06/20/heaven-over-hospital-juliannas-funeral-nccorig.cnn
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Thank you
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There are no words I can say to take your pain away at such a sad and painful time, but know that you had such a wonderful baby girl that I absolutely loved to hear about. Wow, what a truly beautiful spirit your daughter was blessed with! Although just a child she made me think about the way I live my life. I am a mother of four and although I love my kids with everything that I am she truly made me appreciate and love my kids even more! She had a way with words and a fight and love in her that I wish more people on this world had. Just think how much better it would be if it did! Even though I didn’t know her I felt as though I did and loved her just as much as my own kids. I cried when I found out and I will miss her and I pray that you and your family will find peace in your love for one another at this tough time in your lives. But know she touched so many lives and she will not be forgotten! Thank you so much for sharing her with all of us!
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Hi Michelle this was very beautifully written, I had tears as I read it. I pray that Julianna is happy in heaven and that your family is okay. Julianna has touched our hearts beyond words. Thank you from your friends always, Pedro, Sujin, and Jessica.
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I just found your blog today, I read the entire story all day. I have 3 children of my own and lost one 21 hours after birth in Jan. Your story has touched me greatly. My prayers are with you..
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Thank you Michelle for including us in Princess J life. I can’t take my eyes off of her. So much love you could see it on her face. What a wonderful world it would be if there were more people like J and your family. Sending up more prayers and lots of love. 👸🏻 🌺
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I saw a glimpse of heaven, reading your story. Thank You Michelle and Steve for sharing your daughter. God Bless You. Marie. Colombo, Sri Lanka
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J was an exceptionally special child and, solely because of your willingness to share Julianna with us, were we blessed to be allowed to know her. I feel J could only have learned about pure love from her family, and that nurtured love grew and definitely became Julianna’s superpower; love emanated from her and her love spread around the world. It continues to spread. She was 5, a child, who loved glitter, princess dresses. and pink (I’m a grandmother and I continue to love glitter, princess dresses and pink) yet J also seemed to be wise beyond her years, albeit, an old soul. Oh, and the subtle lessons she relayed through example, a positive attitude and being grateful being a few. I wish I had magic words to ease the pain of her passing, there are none. I pray that those that love her find solace in their memories of her, until that time when they join her on her journey. Thank you, again, for sharing Princess J with us.She forever touched so many, she forever touched me God bless! ❤👸❤
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I’m crying right along with you. And thank you for the reminder — love *is* a superpower. Without it, we’d all be lost.
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Reblogged this on The Official Blog of Jimmy Buchanchan and commented:
This story is featured this week on the Motherlode. I encourage you to visit this blog and read the story of young Julianna, who fought a brave battle against CMT with love and unbounded optimism. R.I.P. Julianna.
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I’ve been reading about Julianna for quite a while now. Like so many she touched me deep, I have several of her pictures on the wall in my office at work that look at me everyday and I look at them everyday. People are always asking me, who is that and I tell them the story. She is one little soul I never met that will forever be inside of me that provides strength to my soul and will give me strength when my day comes.
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