We are coming to a strange anniversary.
One year ago, things fell apart. What happened next – a hospital-free year with Julianna – has been beautiful and unexpected.
These days, I try to live in the present. Frankly, there is a lot that I don’t want to remember. There’s something about anniversaries, though, that demands reflection.
I wrote this letter one year ago. Most of it is copied below (italics), with updates and commentary in blue.
This anniversary, we are celebrating how far we have come. We cannot take any of this for granted.
28 October 2014
Dear Friends,
You may or may not know that Julianna was hospitalized almost 3 weeks ago for another respiratory problem. She is better now and will come home tomorrow.
In 2014, Julianna spent 66 days in the hospital. This was her third PICU admission in ten months. We tried so hard to keep her out of the hospital, but it seemed like nothing was working.
It has been a really difficult year for us. We have been in survival mode for at least the last year and have thus been largely non-communicative – even with our closest friends and family. We need your support, though, so we wanted to start by letting you know what we are facing.
For a long time, we kept everything to ourselves. It was too painful to put our reality into words. This e-mail was one of our first attempts at letting others in.
Julianna turned 4 in August. She is a bright, kind, funny and amazing girl who happens to have an awful, debilitating neuromuscular disease. The worst part of her disease is that it affects her breathing and swallowing – these are the things that ultimately shorten lifespan in people with neuromuscular disease.
I recognized these signs before anyone else. It’s the double-edged sword of being a physician and mother. I struggled mightily against this knowledge. I told myself that I was being paranoid — maybe J wasn’t getting better because I was too pessimistic. It was easier to blame myself than to admit that J’s disease was really, really bad.
We have come to the awful realization that Julianna will not live as long as we want.
It was devastating, getting to this point. Once acknowledged, there was new pain, but also freedom. When you’ve come to terms with your worst fear, it loses some of its power. I’m still afraid of what is to come, but it no longer paralyzes me. We are on borrowed time, and it can’t be wasted on fear.
We don’t know how much time we have with her – it could be months, it could be years.
Still true. I didn’t think that we’d make it through the winter, and now we are facing our second. She is so fragile. But maybe we can do it again – God willing.
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 have struggled with this as well – b/c it always seems that the children who face the most serious illnesses are also the most special. If I had my choice, she would be more ordinary – and we would be able to see her grow up.
I have come a long way in accepting what I cannot change. The same God who made Julianna bright and lovely also allowed her to have a cruel disease. I believe that children who are asked to endure serious illness are given strength that the rest of us cannot understand. They are special. I think it’s God’s way of saying “I’ve got this. Just follow her lead.” So I follow.
Things are complicated here. It’s not an easy time for us but we are trying to trust God. It’s the only way.
Amen!
Please keep us in prayer.
Love,
Michelle and Steve
Prayer has given us this beautiful year. When I wrote this letter, I could not have imagined that I’d still be sitting here tonight, by Julianna’s bed, waiting for her to fall asleep.
Oct 2014
Last night, I gave her one last hug as I tucked her in.
J: I will love you forever.
M: I will love you forever.
J: I will always be your baby.
M: And I will always be your mom.
J: Not when we die…
M: Yes, even when we die.
J: Mom, will you miss me when I die?
M: Oh, Julianna. I nod.
J: I don’t want you to be sad. I want to give you flowers so that you remember me.
M: Julianna – it could be a long time – you’ve done so well. Do you worry about dying?
J: Nods. Sometimes. I’m used to things here. I’m not used to dying.
M: Of course not. No one is. We only die once. Sweetie, I don’t want you to worry about it.
And we prayed. Prayed that she doesn’t ever get sick again, and that she won’t be afraid of anything. I thanked God for the joy that she brings and told Him how much we love her.
June 2015. Photo by Aubrie LeGault, Capturing Grace Photography
I stayed there, kneeling by her bed until she fell asleep.
Julianna Yuri 
These are beautiful moments that we are privileged to be a part of because you, Michelle, had the courage to share them with us. “Special” doesn’t even begin to describe how amazing this little girl is. Julianna’s strength and joy are living testimonies of God’s presence. Thank you, Julianna, for blessing us with your wisdom and sweet spirit!
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As a father of a 3 year old girl with twins on the way, reading your story both here and on CNN made me well up. I cannot imagine what you are going through, knowing your child will not be around much longer, and there is not much that can be done about it. I fully support your choice to allow your child to make the choice of heaven over hospital….as someone who has been in the hospital for multiple surgeries over the past years, I know how painful and unpleasant a hospital can be….if the only thing going to a hospital will do is prolong life for a few more weeks / months, then it doesn’t make sense to subject that child to the severe pain that these procedures cause. Your family is heavily in my and my family’s prayers, and while I pray for new technology to create a miracle for your daughter (however unlikely that is), if she does pass on at least she won’t be in pain anymore.
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I am holding Julianna and your family in my heart, and will continue to keep you each in my prayers. You are all so courageous and Julianna is such a treasure! Thank you for sharing your beautiful story. Children are so much more aware and capable than we give them credit for! Sharing your story has also helped me and many others I am sure who deal with caring for a severely ill loved one. Each day I will be praying for joy and strength for you all. God bless you!
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I get a big lump in my throat and my eyes fill with tears reading this. We love you guys.
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Thanksgiving cant come soon enough. Love you all very dearly.
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I thank God for a year without any hospitalizations for J! Just the other day I was thinking about this and felt grateful for this time and the ability to get to know her better and feel closer to her through your blog. Thank you for sharing with us your most intimate thoughts and fears so that we can feel closer to J. Love you guys!!!
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As a parent, I cannot imagine what this is like. My wish is that people are not judgemental or keep their judgements to themselves. It’s very clear to me that honoring J’s wishes is incomprehsively diffucult because parents are wired to do anything and everything to keep their children alive and well. Not to mention as a doctor, it’s your sworn oath. Yet in many ways, you are protecting J – protecting her from horrible, painful procedures that may be prolonging her time, but aren’t going to heal or cure her. To me, this is above and beyond being unselfish. I will keep your family in my thoughts and prayers. Julianna seems like an amazing little girl. Thank you for sharing your story.
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I just read your story for the first time on CNN.com and I felt compelled to write you and tell you how much I admire your daughter Julianna and all of you. From now on I will pray every day that God continues to give you strength and peace. Thanks for sharing your story through this blog. Sending lots of love and hugs!
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I just read your two part CNN story and have tears in my eyes. I can’t imagine what it is like living with Juliana’s terrible disease and I also say – whom am I to judge? From your story, I think Juliana is wiser than most of us and I admire her courage very much, as well as the courage that everyone in your family has shown these past 5 years. For people to criticize any decision your family makes when Juliana gets sick again will not be fair. Let’s hope that she does not get sick soon, although the season is coming upon us where colds and other illnesses will rear their ugly head. I am praying for all of you. Thank you for letting us into your life.
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I’ve just finished reading the article about Julianna on CNN, what a wonderful family you have! The love you share is so strong. Julianna is such a lovely, brave girl. My son, too, has CMT and we believe it is a mutation. He is a teenager and struggles everyday but he trusts in God. Your writing brought me to tears but means so much to me – ” I believe that children who are asked to endure serious illness are given strength that the rest of us cannot understand. They are special. I think it’s God’s way of saying “I’ve got this. Just follow her lead.” So I follow.”
Thank you for sharing your story, it will teach more people about CMT. I am prayig for you and Julianna
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Thank you for sharing your feelings, nobody else can understand and put a value on your pain you’re all enduring. In my own life and issues (I have a child with medical issues) that come with it, often people say “I’m praying for you”. For some reason it bothers me at times, it feels like its just a saying, although term of endearment, I feel it can so easily just be tossed around without real emotion attached to it…So I say to you all in my way, this isn’t fair, you don’t deserve this, and mostly Julianna doesn’t. They say with pain comes strength, I have yet to find this in my life but I’m hopeful in your challenges it is found. I can say reading your story today and Julianna’s words have not only brought tears to my eyes but brought me hope for not only you but for my own. Sharing this has affected others (as it has me). I can only hope that you’ll find peace. Squeeze your loved ones tight.
Thank you and bless your family.
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I read your story on CNN and have been reading your blog for hours. What a remarkable little girl you have and what incredible parents you are for your strength, wisdom, and courage. I will keep your family in my prayers and hope that you continue to have more beautiful moments together in this life than you ever could have imagined.
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Your Love for your daughter and family is so strong and profound.
Wisdom doesn’t only come with age. I wish you and your family all the best. ♡
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Emily Rose Olvera had terminal ALLPH+ (40 kids in USA a year) at age 8 and was given 8 months to live. I am a Harvard physician, My wife is former Air Force RN. We have an idea what you feel like, my heart goes out to you.
You will know what to do when the time comes. After 32 years of medicine I have seen enough people die. In chronic illness even these little angels know when enough is enough. My daughter used to say no one should have to live like this.
Children with devastating or chronic illness grow up fast as we parents and others see they deal with adult issues. I have to say I side with the Doctor at CHOP. It is great you had the conversation of death with you daughter, no matter how young. She knows she is going to die. Most people are to afraid to talk about it. I commend you. My daughter gave specific instructions on what songs to have on the play list at her funeral, who she wanted to give her iPad to, and passed out some belongings to her best friends. She dictated a letter to a friend, to be given to us on the one year anniversary of her death. In it she reiterated hew wish to die. Listen to your daughter, no one knows her better on this earth other than her mother, she is and will always be a part of you.
I recently read an end of life article that stated how we should listen to the dreams, listen to the visions she encounters. You will be glad you don’t discount them. Do not discount them as Dr. Ethicist does.
The story of Brittany Manard with a little help from Emily got the law changed in California. The End Of Life Options Act was just passed . I testified to the Senate subcommittee on health about my daughters horrible death, how she wanted sleeping pills to die, and how the law could have helped her had it been enacted. I have done nothing but read about and learn more about death this last year. I want to follow your journey and help anyway I can, as I,we,have walked in your shoes. God Bless
– A Bereaved Parent
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Best wishes to your family for a wonderful Halloween for your little girl and little boy. May they both enjoy “playing pretend” and being someone else for just a little while.
Thank you for sharing your family’s journey. I pray that by using your doctor’s wisdom along with your mother’s heart, you will be able to jumpstart creating a cure for this cruel disease.
Your decisions and Julianna’s wishes will combine to be exactly what is best, no matter what the end result may be. After all, you love each other madly, and that makes all the difference. God bless you.
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I first became aware of your story when you posted to The Mighty. I walked away after becoming enraged at the judgmental comments I read. I apologize for that. You are doing what is best for your child – what she has asked for. I’ve read many blogs where parents have pushed their terminally ill children beyond what I would consider humane, but I’ve never judged them. I can’t. I’m not a parent. My niece – the closest thing to a child I have – is happy, healthy, and darn wise for 7. Even if I were a parent – I am not you. No one is. It stuns me that the same voices who urge other parents to keep fighting are angry at you for not fighting as hard as they think you should. I’m not sure where the idea comes from that bravely facing death means delaying it to the last possible second. That seems to contradict the idea that in the end the decision is God’s. Life and death issues are the most personal decisions we face. Thank you for opening up a dialogue about these issues – especially regarding children.
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Michelle, I just read your little girl’s story on CNN. Words cannot express how my heart was touched. For me, it’s incredible she exhibits such a strong faith in the fact God will take care of her. The love you and your husband have for your daughter is beautiful to see. Never doubt your decision that you’ve let her make this choice.
God grant you and your family peace and joy in these final days together. Hold each other close as He surrounds you with His love.
God bless you all!
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I struggle to find the words to express my sympathy. Your faith in God and your infinite love for Julianna are inspiring and truly God lead. My heart goes out to you and your family and my prayer is that the Lord continue to strengthen and comfort you. God bless you.
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I just read about your family’s plight on the CNN Website. Godspeed and God Bless. Cyber-hugs to all of you!!
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I can only admire your family for having the strength to let Julianna die in peace and in the place she loves, with the people she loves. Life and “living” are two different things. How anyone could fault your decision is beyond me. Heartbreaking, but a true testament of love and faith.
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Thank you for sharing your beautiful daughter’s story. I cannot begin to express how deeply touched I am by your family and the inspiration I feel through your journey. Your daughter’s courage and belief in God strengthens my heart. I send my continued prayers for your family and your precious Julianna and I say that with my heartfelt thanks for reminding us all that our love for one another and God is all that matters.
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Wow. I just read Julianna’s ( and your family’s ) story on CNN.
First off, may God continue to bless you all, Julianna is such a beautiful girl, inside and out. To those that say she is to young to understand I say she is so much closer to God than they could ever imagine.
May God’s peace be upon you.
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Hi Michelle,
My name is Virginia and I have CMT as well as 2/3 of my kids. I run a support group in Las Vegas for CMT and will be sharing your CNN story.
I run with braces and would love to run in Julianna’s name. If that is ok with you. Maybe take pictures before or after the race and send them to you. You have my email. She is such a strong beautiful child. I send LOVE AND LIGHT TO YOUR FAMILY AND SRNDING HEALING THOUGHTS AS WELL TO YOUR LITTLE PRINCESS. I wish I was closer so I could offer my help in anyway, shape or form.
Thank you.
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My best wishes for Julianna and your family. As a father of 3 children, I am selfishly glad to have not to face what you are enduring. I think nobody can give you advice or recommandation without living what you are living. Your choices, as dictated by your chid’s love, will always be the best.
Kind Regards,
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I believe the previous comments say pretty much everything I would say to you and to your amazing family.
I cannot thank you, your family and J, for Sharing your journey with us. J, truly is a special child with an amazing spirit that leaps off the pages and touches my heart. I will continue to follow J’s story and will keep you all in my thought and prayers.
Sometimes those of us who are alive and healthy need a reminder not only to live but to do it with great joy and love in our hearts. Thank you J.
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It’s easy for people to judge. But holding your own council is the bravest choice of all. Your sweet girl knows heaven as God has never left her side. A host of those who love her have gone before and will be there to hold her when and if. Many warm wishes to you all.
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You are an amazing mom and Julianna is indeed one of God’s special ones. I had one too, and he taught us so much. Don’t listen to the detractors, they have not walked in your shoes nor anything close to Julianna’s. Only you and Scott can make these decisions, and it is okay to let Julianna have a voice. These kids just “know”, and they have the Spirit inside them, so let your Faith be the ultimate guide. May God Bless all of you – especially Alex, for the siblings often hurt the deepest and yet smile the widest. I will keep Julianna in my prayers and wish for each of you the continued grace to love and live each and every moment with peace.
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Well said- a fellow bereaved parent
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I’ve just read your story on cnn.com and I feel compelled to write to you and your family. Your daughter, Juliana, is nothing short of amazing. All the choices you are making with her are yours to make. I am horrified to read that people would have anything negative to say, instead of reaching out with the compassion and understanding of your tough situation that you deserve. You are incredibly brave to share your story. I hope that you will have time to cherish these precious moments and that you can find joy together with her. All my best to you and your family.
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You are a beautiful and blessed family to have such a wonderful daughter as Julianna. I just read her story on CNN and had to read your blog imediately afterwards. I wish you and your husband all of God’s strenght and blessing and I will pray she stays at home as much as possible. I’m sure she is here to show you and the rest of the world how wonderful God is despite all the dificulties of this world. I will never forget Julianna and you family. Her faith is so big! God bless you!! Sorry for any English mistakes. I’m from Brasil so English is not my tongue language.
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can’t imagine what you’ve been and continue to go through every day.
I 100% agree with your decision to honor your daughter’s wishes
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Thank you for sharing your hearts with so many people. It is evident of God’s presence in your lives and what a blessing all of you are to the world. Your writing is so deeply felt and filled with love. The love, wisdom and gratitude pour off each word. Thank you, thank you God for blessing this family, thank you.
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Michelle, thank you for sharing your story. I cannot express how much it has touched me. I wish you and your family all of the best. I believe that you have made the right decision to let Julianna choose her own future. To anyone who could say otherwise, I truly believe that if you are old enough to live through such a horrible disease, you are old enough to make the decision about your future. I hope you and your family are able to share many more memories with Julianna. -[Princess] Jasmine
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God bless your precious little girl… She is truly a gift to your family and to this world filled with haters and non-believers. I think you are amazingly strong and understanding parents and I pray you keep your faith strong. Nobody has the right to judge you as they could never even fit in your shoes, let alone walk your path. May God hold you all close.
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Thank you for opening J’s journey with the world. I know you’re supported and lifted in love from near and far. The conversation dialogue that you share stings my heart the most. Yet, it also gives me clarity on how to honor the questions that children raise about Heaven and death. It’s given me courage to stick with the tough subjects when they come up. I already feel I do a good job of creating space for the conversation but I can do better. Love and light to you and yours. – Vanessa (mom of 2)
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My heart is with you all. As a parent of a child who has lung disease, I know only a bit of what you are going through, but sometimes even that feels too much to take. It is incredibly hard to watch your baby suffer through so much with no way to fix it or take it on for them.
Julianna is clearly an exceptionally bright and charming wee girl whose family loves her beyond description. So many of her quotes made me laugh.
I am thankful that you have had this unexpected time without hospitalizations, and I pray that it will continue. I know what it is like to dread the winter months, and every day I will be thinking of your girl and hoping that none of the regular winter illnesses reach her.
Warmest wishes to the whole family. xoxo
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I just don’t have the words right now because I just finished reading the CNN article and my eyes are filled as well as my heart..J is an amazing child..I pray for you Michelle…May God place a hedge of protection around you and your family…to continue to give you strength and to bless this precious child…as a mother, I can understand your decision…I will keep you and your family in my prayers…hold on to God!!!
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You’ve raised a wonderful human being. No one, on earth nor in heaven, has the privilege of judging your family’s decision. With all that I have in my soul, I wish your family peace.
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Please don’t think me callous if I thank you for sharing your story about your amazing family and particularly your gift from God, Julianna.
I will kiss my own angels once – or maybe many – more before I go to bed, where I will send prayers for you all, to keep you in strength and peace and His Grace.
Julianna, thank you for showing the way. You are breathtaking.
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Dear Michelle, I’ll keep Juliana and your family in my prayers. Your story brought tears to my eyes, and I pray that you’ll never lose sight of how much God loves your family.
When I’m having a tough time, this song gives me comfort – I hope it does the same for you too!
“Captain” by Hillsong United.
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Dear Julianna,
I read your mommy’s blog just now after hearing about your story online. I think you are such a wonderful little girl and so very smart! I wish I could meet you because I’ve never met a princess and you are certainly a beautiful and strong one!
Michelle, I will be praying for your sweet baby girl and your entire family. I can only imagine how hard this must be. Hold on to Jesus as you KNOW He holds Julianna in the palm of His hand!
I wonder if you’ve ever heard of Kara Tippetts? She wrote a book while she was alive called “Mundane Faithfulness.” You might find some comfort in her words as she fought her battle with cancer. I have a feeling Kara and Julianna will be celebrating together one day!
Lori
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You are all so sweet, so strong, most especially your sweet, little J. She is stronger than millions and thoroughly enjoying her blissful life in heaven. She is a special, special creation of God. J will be admired for generations.
Thank you for allowing us into this private journey. Please keep your hopes up. Find peace in the knowledge that God loves her more than you love her, so He planned for the best to happen. It may hurt beyond words and we may not understand, but maybe He wanted her in heaven sooner 🙂
Still, I am so sorry for your hurt. People everywhere are praying for you ❤
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I came across your story today on CNN and was greatly moved by what you’ve been through and the strength of your family. Maybe it’s because I have a young daughter as well, but I’m touched to the core, and I’m reminded by your example that there are no guarantees in life and to enjoy the moments we are given. I will keep Julianna and your family in my thoughts. She’s an amazing spirit and my hope is she remains as well as can be. Though she must spend much of her time at home, she should know that she has reached out to many far and wide and made a difference in their lives. Be well, Julianna.
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Hello Michelle,
I just spent some time reading through your blog. Your stories, and more importantly your daughter has touched my heart. I am thankful that God has given you such a beautiful year with your daughter. I pray for continued peace and wisdom as you face the future. The God given joy is evident in your writing, joy that is in the midst of sorrow. I praise God for what he has done, as well as shed tears over what you have all gone through. You have been tonight and will be in my prayers.
In Christ,
Sarah
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I have just read your story on cnn.com
Julianna, Alex, Michelle and Steve, you have touched my heart. I send you my prayers, my thoughts and my love.
God bless you all.
Thank you, Julianna, for giving us a gift of your amazing spirit.
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Dear Michelle,
I, like so many others, just read your story on CNN and felt the need to come to your blog and tell you how moved I am by sweet Juliana and your love for each other. Your family is so special, and you know more than anyone else what is the best decision for your girl; don’t ever let anyone else’s opinion cause you to second-guess yourself.
I am so, so sorry for the pain your family has endured and please know that Julianna (and Alex) will remain in my thoughts and prayers for a very long time to come. How lucky you are to have been blessed with such a spunky, brave, wise little girl. Reading your story has touched my heart in a rare, profound way. Thank you so much for sharing your family’s love with us.
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We were sent a link to your story by an american relation. Our daughter Caitlin (16) is going through a very similar battle to Juliana. (If you look at her Go Fund Me page – Caitln’s Eyegaze System – you will see her story to date and how she is raising money for an Eyegaze System for herself and for others). She was diagnosed originally at 15 months with Cerebral Palsy then at 6 with CMT and finally at 9 with CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). she did have 6 years of treatment for CIDP but it made no difference and just like Juliana she appears to have a very rare form of CIDP. She has been mostly bed bound for 3 years and has not been out of bed at all since March this year. She has great anxieties now about her breathing and is reliant on BIBAP 24/7. She has no movement now from the neck downwards and is NG Tube fed but is able luckily to eat small snacks. Just like your Juliana she is as bright as a button and my husband and I are feeling our age as her brain seems to get quicker as ours slows down. Caitlin is an inspiration to us, and anyone who meets her, every day. You seem like amazing parents and the one thing that my husband Sean and I struggle with is having no-one to talk to who has been in the same situation as you as no-one gets how difficult it is for you all , including Caitlin’s older sister Lucy. If you ever feeling like chatting or just communicating via email it would be lovely if I could support you in any way. Everyone wants to help but unfortunately there is very little that people can do or say. Like you no-one is allowed in the house if they are ill at all and Caitlin did have a respiratory arrest in December 2011 after a particularly bad bout of pneumonia which followed on from a huge scoliosis operation the previous summer. The BIPAP together with a pressure sore mattress which turns her from side to side has helped her an awful lot as we were told she had less than 20% lung function over 3 years ago. Despite all this she has recently passed her Grade 7 singing exam – the only time she ever takes her BIPAP off (apart from cleaning) is for her singing lesson! Our thoughts and prayers are with you all and just to say that reading your blog has helped me so much if there is anyway I can help please let me know. Love Louisex
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Michelle, I hope next year will also pass peacefully for your little angel Julianna.
You and your family are really great. Julianna is beautiful and wonderful!
I will pray for Allah to take good care of all of you, specially of little J.
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I stumbled upon your blog after seeing the article and your story about your daughter’s amazing and impressively profound take on Heaven. I have to be honest, I was never a believer in Heaven. I was raised a Catholic, my mother has worked in the Catholic Church as the music director and organist for over 30 years, and I have been exposed to it my whole life, but for some reason, never accepted Heaven as a possibility, because we “just don’t know”. Maybe I’m just a realist, and I need to see to believe. Well. Now I’ve seen. Through your daughter.
Her incredible faith is not only wise beyond her years, but has truly, truly thrown me for a loop. How can such a beautiful, innocent and young girl have such confidence in something that none of us have any proof of, unless it truly exists?
I am heartbroken for you, J, and your family, and couldn’t even begin to imagine the struggle, the pain, or the fears that you encounter every day. But at the same time, I thank you for sharing all of those, and for sharing the happy times, the smiles and the laughter, because they are all so much a part of it.
Your daughter has truly made me second guess my own beliefs, and any fear or uncertainty about my own journey to this place we call Heaven, has truly been calmed. If there is a Heaven, and I will be there one day, I would be honored to share my home away from this Earth with someone as inspiring and beautifully courageous as Julianna.
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Parents should always protect their children and care for them. I have read a lot of negative things about your decision, but I can honestly say you are just protecting your kid. No one knows the pain and suffering Julianna is going through, so they can’t comment on your decision. Michelle, you see her pain. Even though you want more time with her, you are putting aside your own selfish desires to protect your child from the thing that’s causing her pain. Your family is so strong and God put his angel in your presence and care because he knew your situation would help millions. Your daughter was meant to bless other families struggling. In a way, that is a beautiful thing and your daughter will always be remembered. Trust in God! I hope your family has a wonderful holiday season!
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I think you and your husband are unbelievably brave. Don’t even listen to anyone who tries to tell you what’s best for your little Julianna. After reading what she has to go through, who would think that it’s necessary for her to undergo such pain ever again. How lucky she is to have you 2 wonderful people as her parents. I’m sad that she can’t be a healthy little girl. I hope you all have peaceful hearts about this decision.
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Michelle and Steve – As a father who lost his daughter 8 years ago, at age 20, I understand your desire to allow Julianna to make the difficult decision to leave this earth and loving family. I remember asking my daughter to keep fighting when she really wanted to give up. Although we agreed to try one more type of treatment, I felt I was being selfish. The treatment did help, but she eventually lost her battle in the hospital three months later during a stem cell transplant. She is in a better place, where there is no pain or sickness. I feel her presence and am content. Those that haven’t lost a child will never understand the emotional drain a long illness can take on a family. You are preparing for the inevitable. Because of the support you’ve given Julianna in her decision, it will help in the grieving process, knowing that your little princess is in a better place. Keep the Faith.
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I found your blog by way of a CNN article about your beautiful, brave daughter. You and your husband have given your daughter an amazing gift of eternal life. Those who do not know the gift of heaven will be critical, but those of us who hope, trust and cling to our faith in Heaven, know that this world is not our home, we are merely passing through. Thank you for sharing your story. It takes a lot of guts to put yourself out there. I will be praying for Julianna and your family. “Weeping may last through the night, but joy comes with the morning.” Psalm 30:5.
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You have a Very Special Little person. I just read this story and it brakes my heart to know what this family is fighting thought. But I also know God is with her and your family, and only he knows when it will be time for her to come home. Your family will always be in our prayers. God Bless
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