June 2015. Forehead to forehead. One of my favorite nighttime rituals. (Image by Aubrie LeGault, Capturing Grace Photography.)
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.
You have a truly remarkable child and family. May the peace of the Lord be with you all.
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My heart goes out to you and your family.
I was stunned by Julianna’s spiritual stature. I have been a devotee of Eastern Philosophy over 40 years. The main scripture that I follow is the Bhagavad-Gita. In it, God, in his aspect of Krishna says “I am seated in everyone’s heart.”
Even though she is so young Julianna must be very spiritually advanced to realize God within the heart. Many devotees perform severe austerities all their lives without coming to this realization.
So God is comforting her and removing her fear. He is also teaching us through her.
Please offer my respects to your daughter. She and all of you are in my prayers.
Paul
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My heart goes out to you and your family.And Julianna’s profound courage is admirable beyond words.As a mother,I know how tough it is to make a choice between keeping and letting go of the children we love so much.God has blessed you with a beautiful courages daughter and she’s a priceless gift.And to Julianna,thank you princess for touching my life beyond measure.
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…for of such is the kingdom of heaven.
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Yes. I completely agree. What a sweet, beautiful, enlightened soul.
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Mrs. Snow,
Thank you for sharing Julianna with the world. Her courage and strength is so profoundly admirable. Knowing she exists made my life richer. I’m not a parent. 1 fully support and respect you and your husband’s decision to let Julianna go as per her wishes. I only hope the kingdom she enters is more beautiful and more wonderful than any of us can possibly imagine.
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That’s so sad I will pray for your family 👨👩👧👦💐🎂💫🙏
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FAMILY, MAM, DAD, ALEX, BIG BROTHER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
JULIANA WAS ABSOLUTELY RIGHT …. GOD IS TAKING CARE OF HER AND YOU AS A FAMILY .. …. HE DID WHEN SHE WAS HERE …….. EVERYTHING SHE SAD WAS AND IS TRUE …… ALEX HOW DO YOU FEEL?????? I CAN WRITE A LOT, ALL I WANT TO LET YOU KNOW ….. I KEEP YOU IN MY HEART, A SPECIAL YOUNG LADY PICKED YOU AS FAMILY …… GRIEVE, REST, HEAL AT YOUR OWN TIME …. DO NOT LET ANY NEGATIVE COMMENT THROW YOU OF YOUR FEET …. JUST SEND LOVE … AND CHERISH THE REMARKABLE YOUNG MAN IN YOUR MIDST THAT IS THE BIG BRIOTHER. …. WITH LOVE … linda
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I don’t know everything in this world, but I know one thing to be true of you, you are the most selfless mother I know. I would not be able to let my child choose. I would fight no matter what it took. All I have is my children. I could not imagine losing a child. You are a brave woman and I will pray for your family and most of all you and your daughter.
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I just read this touching story on CNN. I think your whole family is incredibly brave. We can’t all control the cards we are given and we play with the hand we are delt. And for anyone who questions your decision, well they have never been delt that hand so their advice is irrelevant. Julianna got her cards and it is amazing that she is going to get to play them the way she wants to until the end. It’s bittersweet but every moment, every step, every smile means more now than it would have ever before and that is a gift to get to appreciate life on a level that many people forget to until it’s too late. Prays go out to your family, thank you for sharing your journey. It has touched many hearts including this one.
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I have never been so moved and so touched by any story I have read. I am a mother of three young boys and I can not fathom what heartbreak your beautiful family is enduring. This has touched me so deeply, I can not put it into adequate words. I haven’t cried tears like this in years. I never have posted or commented on any Story ever. Your intelligent and beautiful daughter, the same age as my youngest son, has made a footprint in my heart- quite an impression. She is an amazing gift from God and will be amongst the brightest of lights shining down upon us from Heaven. As parents, I believe you are the cream of the crop. You are amazing —-you love your daughter so much, that you are willing to let her go…… I can’t imagine what that realization and acceptance of that decision has weighed upon your breaking hearts. I admire you immensely. Your son is brave and strong and I will pray each and every day that your beautiful daughter , Juilianna, will have an abundance of glorious days dressed as Princesses in her Princess room……..However, the fairest and most beautiful of all , is Juilianna. God Bless!
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What a wonderful thought. You are correct because the most loving act a parent can make is unselfishly letting go of the child they so dearly love. My 12 yr old son had a tragic accident almost three years ago and left in a coma and massive brain injury. We had to let him go
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Dearest Michelle:
I want to thank you for your brave act in sharing your story with the rest of us. I only just read it, and I found it on FB… I must say, that I can not, for the life of me, imagine what you and your family are going through… I think on some level, we all know that our time here on this planet is brief… we all hope that we may live a long and happy life… we hope to see our children grow up and live a happy life as well…
You are living every mother’s nightmare… but I wanna share something with you.. I know what is like to have a child and then watch her die… but God was merciful and took my daughters after only a few days after being born… they didn’t suffer (or so I’d like to think)
I guess what I’m trying to say (in such a poorly articulated way) is thank you, because through your story, your little girl has taught me a valuable lesson.
And I wish to say how sorry I am, for what you are about to experience… we never really stop grieving for our children… and no parent should have to in the first place…
I pray and I hope to God, that she can be spared any more pain and suffering… and I hope that she knows how loved and admired she is, by so many people.
I send you all my love and please be sure that you are not alone. You and your family are now a part of ours… we have you in our prayers…
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I am a a girl like your daughter. I have a terminal genetic condition and have known my entire life I was going to die young and have accepted that. I have been lucky enough to get many years on this earth (22). I think your decision to let her choose is amazingly selfless and great. My parents gave me that option and never made me do anything I didn’t want to do. I chose to go to the hospital instead of staying home but that was my choice. Even at a young age (even when people said I didn’t understand or was too young) I knew what death was and understood what it meant if I didn’t do those things. I was young but had been through more than most go through in their entire lives, maturing me and giving me knowledge others did not have. I think you allowing her the right to chose to go to heaven in her own ways, with some dignity is the right choice. Stay strong. God is with you. Always.
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Thank you for sharing your story with the world. I’m sure it wasn’t easy; what courage the Lord gave you to speak of Him and his love abounding in Julianna’s heart! What you and your husband have chosen to do is right. You both know your daughter best and so do not be dismayed by other’s negative comments. God gave her to you and you to her. You love her fiercely, you love her enough to let her go on her terms. I can’t imagine the pain; your love is selfless. God is carrying your family. He is waiting for her and she will be lifted high by Him! What a beautiful example of the peace that comes from God, even at such a young age. I will pray for your family. What a blessing Julianna is upon all those who hear her story! Stay strong in your faith, God will carry you through.
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What a super parents are you; to accept the wish of your daughter although it means that you have to miss her. The greatest, hardest gift you can give your child. Most people can’t accept the fact that they have to say goodbye and want the other one to go through everything possible even when it’s unbelievable painfull or hard. Great respect for you!
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Dear Juliana
I know you r just a little girl…as soon as I heard your story that your mommy shared I thought of the wonderful place you might be going to. Its heaven. Juliana…I have a brother In heaven he loved Jesus too. He was a respiratory therapist, he loved to help people and he really loves kids. He’s in heaven now too…we will all miss you even if I dont know you on this earth. I will meet you in heaven. Juliana you are beautiful. Remember Jesus loves you so much and he is always there by you. With love Ally.
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Best wished to you, your precious little one and the rest of your family. For what it’s worth, I support your decision. It isn’t how long we live but how we live that is what is important. It’s obvious to anyone with eyes and a heart that love is what motivates you. Any child would be truly blessed to have you and your husband as parents.
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Hi Mrs. Michelle Moon
I just read about your beautiful daughters sickness. I touched her face on the screen and prayed for her
healing in Jesus Christ name. I live in Spring, Texas I would like to talk to you and your husband if its
not a problem. My name is Roy Alonzo cell # 832.445.7192. I have a blessing for your daughter
Julianna.
To Her Health In
JESUS CHRIST
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No one lives forever but we will love forever. I am hysterical laughing at what j says and altogether weeping for the empathy i feel. I guess at the end of the day j would have accomplished a lot more than most people in their mid 30s and 50s. Most of us wouldn’t dare to know what appreciation is. She is so grateful at every turn. You have shared an amazing person who can deal with such a enormous weight to the rest of us. Thank J for me and please let her know that everyone recognizes she is a sassy classy princess.
P.S. I’m Korean myself, born in New York my mother sent me to Korea right before 8th grade as well.. Lol my experience was worse than yours.. They are not so nice to English speaking Koreans especially if you are overweight. Oh man your posts bring memories. Only if J could taste kimchi then she wouldn’t hate the smell so much…Lol to her comment about why she can’t smell it…
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Hello Julianna, you look just like my own daughter, Lauren. She’s also 5. Lauren also has a brother like you and Lauren’s mummy is from Asia so Lauren looks half like her mommy and half like me, her daddy, just like you. I think if we lived nearby, you and Lauren could be good friends.
I hope you have a long time with your mommy and daddy and brother. If they are like me, they love you very much. If you have to go to heaven one day then God will take care of you and will make sure you are always safe. I’ll say a little prayer for you and for your mommy, daddy and brother.
lots of love,
Josh
U.K.
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Dear Mom and dad of Julianna,
God is always with Julianna and your whole family is blessed by God.
Julianna is not far away from you, you can find her always close to you and having a conversation with her. Julianna is with God in your heart so close…
They’re always with you all the time!
Her physical body not but her soul is eternal within you!
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Great decision made by God seed. She said it all to be at peace that God will care for her,she knew where she’s going to that is why she’s not afriad most important is to know where is going if leave this world
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I cried my heart out by reading this…………….
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Juliana is an angeL
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I write from Italy. I think that the faith of Julianna is so clear and bright that helps me thinking that everything is possible. A stroke on Julianna head even from a far place.
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Thank you so much for sharing your story. I have several chronic diseases that leave me in constant pain. I understand completely that your daughter knows what is right for her. But I can’t imagine having to deal with the pain so young . My heart is breaking for you all and I’m sending all my love.
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It have touch me also i think he have see something that God has show her and also can be possible that God is going to heal her of you promises God you love and deliver your self to Him for ever.
I think God will use you as mother to now to pray commend the devil to leave her in this right moment and proclaim every moment the Blood of Jesus upon her body.
I think she will be heal if you believe it will happen and you will have your child back again.
never think what is going to happen just believe that healing is coming among her and always see her in good situation not the bad one, that is the key for God to move .
but always God have the last word and He know why and when .
God Bless you i pray also for her to be heal from that illness.
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Your heartacking story has reached the Netherlands… and excuse me for the poor English… my heart and thoughts go out to you your husband and your beatifull daughter… how strong and mature she is… she is very clear in her wishes and you’re so strong to answer them…. as a mother of two beatifull kids ( son turned 6 today and a daughter of 11) I can only immagene what difficult and painful time you go through… but be proud of her and cheriche the time you have been given with her.. my prayers go out to you and your family… but most of all to her… you are a brave and good girl.. and when you go to heaven I’m sure that you will have a great time there with God and you’re family that have been passed before you. I’m sure that they will take good care of you… and your soul will keep on living… greets from the Netherlands… xxxx Bonaria
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This story, I can barely write these words as my heart aches for you because I am a parent. I must say, your daughter’s faith and strength has awakened the Holy Spirit inside me. Thank you for sharing your story, it has spurred me to want to raise my 5 year old up to be a faithful warrior just like your precious Julianna. I am going to add your family and especially Julianna to my prayer list, praying for comfort, peace, and miracles in your lives.
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You are so brave, yet I suspect most days you feel weak. There will be those who attack you, but there are many more of us who stand with you. Opponents of self determination don’t understand that suffering isn’t a passing game – for many it is their daily existence.
You are also so brave to be able to let your little angel go, I don’t know if I could be so brave. I fear I would hang on just to satisfy my own need to have her there for myself, no matter her on pain.
“The wound is the place where the Light enters you.”
― Rumi
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Dear Julianna,
Your time is precious and I really respect your wish to stay home when you need help. You already are an angel. Your parents sacrifice their prettiest gift to give you the best gift in the world: you are able to go to heaven. They will miss you, but you maked sure God will take care of you. You are a very wise little girl.
It is a pity you will not grow old, because you are amazing, Julianna. Parents, you are so supportive… You are fantastic.
I love you, I respect you.
x from the Netherlands
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God bless you, Julianna!
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very beautiful
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beautiful
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I know what you are feeling. We had to let our 12 yr old son go almost 3 yrs ago because he had a tragic accident and was left in a coma and brain dead. From the time of his accident to his death it was just 20 hours. In his ear we told Luke it was ok to go and that we loved him. Although he was on several monitors and very little brain activity, at that point, the brain activity temporarily picked up and tears ran down from his left eye. At that point we knew he heard us and that was the only way he could communicate back. We loved him more than ourselves and like every parent we wanted the best for him. Like you, a truly selfless act of love, is the hardest decision to make. God bless your family.
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Dear Julianna,
Your bravery and life journey has touched many hearts. Particularly, it has reminded me of how blessed I am and that I should treasure those around me more. As your story touches more and more corners of the world (I am from Malaysia, on the other side of the world), do know that you are a blessing to those who have crossed your path and that your existence has made this world a better and more beautiful place. God would certainly be pleased to have an angel like you at his side.
Our thoughts and prayers are with you and your family.
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Your situation is beyond sad and unimaginable! God be with you and your family, most especially with little Julianna.
P/S: i like the kimchee story… hilarious yet gorgeous. spend as much time with her as you can.
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My prayers for your family are real. I pray for a miracle for you all to be together longer. The conversation you had with your little girl was beautiful and shows that the Apple does not fall far from the tree. Seeing daddy tear up when interviewed hit me hard being a father of three girls. It made me cry and I rarely do that. I wish we could save her with a organ donation or something even if it meant us having a more poor quality of life or none at all. We have lived our life so the cost is minor to give her a chance to see hers.
My heart is with Julianna and I will pray for her daily. Know that there are many of “me” out there praying for your family and miracles do happen.
Big hugs to all of you…
A friend from Canada.
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Your daughter is just precious and your family simply amazing. Do you have any social media where I can follow such as facebook?
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Hi Kellie – we don’t have a FB page, but you can follow us on Instagram: @julianna.yuri
Thank you so much for reading!
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@Michelle, I have a five year old daughter as well. I cried when I read your story. Please hug her for me – I can’t imagine what Julianna and your entire family is going through. Children are a blessing from God and I hope she will find peace.
Steve in Cerritos
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Hi Michelle- I am amazed at the strength that you and your family possess, but I am mostly amazed by Julianna. She is such a special little girl with a personality to match! I am in awe at how you and your family have shared Julianna’s life in such a beautiful way. Thank you for allowing us to have a look into her life and see the remarkable journey that you have taken. My heart breaks for your family and it breaks for this precious little girl that has had to endure so much in her life. I wish for you and your family precious days ahead, filled with love and laughter, and as little pain for Julianna as possible. May God Bless your family.
Sandy Kim
P.S. We were friends in high school in St. Louis. Amazing to see how you’ve grown into this amazing woman/mother Michelle!
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What a brave little girl. May God be with her and her parents as she lives and passes over.
My heart aches for you as parents. I have CMT myself and have a daughter and a granddaughter
with it. I lost a son because of it. I am just thankful he is not hurting anymore. I will always feel him in my heart and you will feel your little
Princess in yours forever, also. You are special parents and are doing the right thing to let her
choose her fate. God Bless you all.
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So sorry to hear about your loss…You, Julianna and your family made that best choices you could make given the circumstances… I applaud your convictions…
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Dear Michelle,
Julianna is in heaven now, and for that I offer you my prayers and condolences.
Reading Julianna’s words through your blog brings me back to a story I first read many years ago. It is a fictional story about a young girl named Anna. The book is titled “Mr. God This is Anna”. In it, Anna’s character so resembles your Julianna – her innocence, her sweet disposition, and most of all, her confidence in God. I hope someday you might come across this book…
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Julianna was an amazing blessing, and blessed to have a family with so much love for her. You were correct to include her in discussions about returning to the hospital and continuing painful treatments. Adults believe they continue efforts for the good of a child but it is often an inability to let go. I don’t blame them for this; but children feel pain and know suffering. Your decisions were out of love for your daughter. They were selfless and heartbreaking. I am so sorry about Julianna’s passing.
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I do not know where my comment went, so I add it again.
From over the ocean to you,
FAMILY, MAM, DAD, ALEX, BIG BROTHER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
JULIANA WAS ABSOLUTELY RIGHT …. GOD IS TAKING CARE OF HER AND YOU AS A FAMILY .. …. HE DID WHEN SHE WAS HERE …….. EVERYTHING SHE SAD WAS AND IS TRUE …… ALEX HOW DO YOU FEEL?????? I CAN WRITE A LOT, ALL I WANT TO LET YOU KNOW ….. I KEEP YOU IN MY HEART, A SPECIAL YOUNG LADY PICKED YOU AS FAMILY …… GRIEVE, REST, HEAL AT YOUR OWN TIME …. DO NOT LET ANY NEGATIVE COMMENT THROW YOU OF YOUR FEET …. JUST SEND LOVE … AND CHERISH THE REMARKABLE YOUNG MAN IN YOUR MIDST THAT IS THE BIG BRIOTHER. …. WITH LOVE … linda
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She lives, she still your daughter and she will be waiting for you guys. Heavenly Father will take care of her. Our love and prayers for your family.
Palma Family.
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My heart reaches out to you and to your husband a son. You littlest angel will watch over you and will share her love with you thru eternity. My prayers are added to the millions of others who share their hug with you. You have shared your insight, intelligence, faith and strength with your Julianna and I’m hoping that you will hold onto the knowing that her decisions and yours were the right ones for your family.
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I am profoundly sorry for your loss. I cannot fathom it. My heart breaks that you and your family had to experience this but my heart sings at the depth of trust that Julianna has in God. I have not seen that level of pure faith and my heart can hardly contain itself at the mere reading of the words that declare it. It is special.
For Julianna’s family, please do savor life. It is a gift. Julianna is now outside of time, where 1000 years feels like a day. We remain bound by time, for now. It must be hard to be without her. Watch the sunrises and sunsets for her. Stop and gaze at rainbows. Ponder how beautifully God made the trees. His signature is on all of creation. Please take your time here and carry Julianna’s testimony far and wide. May God grant you a peace beyond all understanding and may His words be fervent in your heart. Thank you God for the message. Thank you Julianna for delivering it.
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She is (present tense intended) so precious. Thank you for letting us get to know her. May God bless your family and give you abundant comfort.
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