Why We Share

Dear Readers,

This post is going to be different from all the rest. Next week I’ll get back to the heart of this blog: celebrating the life of Julianna. Today, I have to share something that’s been on my mind.

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In the next few weeks, our family’s story will be featured in People magazine.

The story is from our point of view, and it will (I hope) show how our love for Julianna and Alex drives everything we do while facing a difficult situation.

We share our personal (and sometimes painful) story for lots of reasons, but here’s the one I want to focus on today: we are really not that unique. There are thousands of families around the world who are caring for and loving a child with a terminal illness. We don’t often hear their stories, because it’s not easy to talk about what our lives are like.

So much good has come out of sharing our story, but we’ve also had some criticism. This is a risk you take when you share. I knew that from the beginning, but I was also naïve then. We are loving parents whose daughter has a terminal illness. Every decision we have made about her care has been with the help of medical experts and has been guided by Julianna. How could any of that be controversial?

I know better now. With this new article coming out, the debate about “can a 5 year old decide?” may be renewed. (For those who have difficulty reading beyond the headlines, note this: It’s really the adults who are making the medical decisions. Julianna guides us, but the decisions are ours.) Some will say that we are teaching Julianna that life is not worth fighting for. With this comes the implication that we don’t believe her life is worth fighting for.

I’m anticipating more of this noise, because it’s happened before. These types of comments have appeared on Facebook, other blogs, published articles, and even my Instagram feed.

Parents like us have had their hearts broken a thousand different ways. We have wounds that will never heal, and we have gone through a form of hell on earth. There should be no judgment – but there is. This is one of the reasons why I’ll keep sharing: I want the world to be a safer place for families like ours.

Here are three things I want people to know about what it’s like for parents who are caring for a terminally ill child:

  1. Assumptions create judgment.

Sometimes, the harshest judgment comes from those who think they know what we are up against. The truth is, even when people share the exact same medical condition, their experiences will not be identical. Sometimes it’s very similar, sometimes it’s wildly divergent. This is why medical care is individualized.

2) We make the best decisions we can with the information we have.

Like all parents, we don’t always know the “right” answer, but we have to do the best we can. The stakes are a lot higher for some of our decisions, and sometimes it feels like torture: If we do X, she may live longer, but Z may happen, and that would be worse. Is the risk of Z worth it? Could I live with myself knowing that Z could have been avoided? What if Z never happens and we’re too afraid to try X? We quintuple guess ourselves – over and over and over again. If you have not had to make these kinds of decisions, be thankful.

3) You want to know that someone else has survived this.

We knew that we weren’t alone, but we felt utterly alone. I desperately wished that I could find other parents who could show me the way. How do you continue to parent when you know you will outlive your child? How do you make these impossible decisions? Is there hope for us?

I didn’t find other parents like us until I began sharing our story publicly. And I wouldn’t have found them if they were not, in turn, willing to share theirs.

I still don’t know what made me send the “heaven” conversations to the Mighty last May– it was almost on a whim. I was clueless back then, and I’m grateful for that.  If I had known then that it would generate criticism,  I would have never submitted the story.

As they say, ignorance is bliss.

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Dec 2015: photo by Capturing Grace Photography

35 thoughts on “Why We Share

  1. Dear Julianna and family,
    I found you through a link on FB that someone posted telling your story. I have followed ever since. My son has a life limiting disease, but can not tell us what he wants. We make our decisions based upon what we know and I hope we make the decisions that are best for him. Reading about Julianna helps to give Reese a voice too. Thank you for sharing your story and Julianna’s sparkle.

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  2. How can anyone judge your decisions especially not having lived what your family is going through.
    I have learned one thing over the years about people, they love to sit back and criticize others about the wrongs and rights of ones decisions, seems like that’s all they have to do with their spare time.
    You and your family are the only ones that know what’s best for your daughter, you are the only ones that know her feelings and agonies (which i cannot begin to imagine). Julianna seems like a very smart little girl, she knows whats going on. You are doing the right thing!

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  3. It really breaks my heart that there’s people that put you guys down, I think what your doing for Julianna is beautiful, and that’s giving her a lot of love, and letting her be a kid , and Julianna always looks so happy, so people should not judge you guys. I also wanted Julianna to know that Jessica loved her new Anna dress. Sending lots of love and prayers from Pedro, Sujin, and Jessica.

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  4. Though it is, I’m sure, extremely hard at times to share your journey, little Julianna has inspired me as I travel on the CMT road. My disease has gone into hyper-drive the last two years since an accident broke both my legs. The deterioration of my hands have been especially frustrating. But then I found your blogs. Julianna’s smile through her limitations caused me to be ashamed for complaining about mine. We all have things to be grateful for if we only look for them. Julianna reminds me to thank God for everything. He really is in control.

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  5. You will get no criticism from me. The unconditional love and support you provide your daughter is commendable. Your faith will continue to guide you. I am honored to follow you and your family through this difficult journey.
    Marianne

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  6. I, for one, am EXCEPTIONALLY glad you shared your story and ESPECIALLY the “heaven” conversations with Julianna. You may not have been thinking through all of it, or the criticism and negativity that inevitably came your way, but I think God speaks through her words in a VERY powerful way to everyone who reads them. And, continuing to share your difficulties (both in the daily caregiving for Julianna and #trulyliving), it presents a powerful example and message of love which everyone can learn from if they take the time to hear it and examine themselves. I’ve no doubt it helps reconnect a lot of us with the more important things in life, and it challenges us to live better lives and love those around us regardless of our circumstances. You, Steve, Alex, and Julianna all have an exceptionally difficult situation you’re dealing with, but it’s abundantly clear you’re doing so with a tremendous amount of grace, love, and wisdom. Her story and her LIFE is having a positive impact, and THAT’S #trulyliving. God bless you and your family.

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  7. Dear Mommy Mish,

    I, for one, am extremely glad & thankful that you shared the Heaven story on The Mighty. It was my first encounter with your family, & with subsequent posts (like the play-pretend-with-Homie one, I think. Something abt playing pretend) it endeared me to follow the story of Princess JuliANNA, later moving on to Instagram & this blog. & then there was the documentary – & Julianna’s upcoming story book!

    Such a joy, even if a bittersweet one.

    Julianna’s been spunky, childlike, super-opinionated (‘God says Julianna is Not Tired’, ‘Julianna – Stinkeye, Julianna / nooo, that’s embarrassing!!!’), definitely princessy in too many ways to count, kind-of-bossy (‘don’t judge’) & all round entertainingly brave and funny (‘get my naked OFF!!! .. I mean, put my clothes on’ & ‘You don’t cry at a 5. It means medium, less than a lot. You cry at a 10’) ..

    but above all, in the midst of her 5-year-old-princess-bossiness(!! Haha I mean it in the most adorable sense! She is so spunky & quotable .. just that her 5-year old quotes are teenage me quotes :p #fiveyearoldteenager) – she’s shown me what it means to pursue things that really matter. For her that looks like the determination to wear a sparkly hairband (even if it isn’t worn the typical way), silk fans, bubble baths & pedicures … I’m not five or sparkly(!), but like I mentioned in the Make a Moment post – yeah, that’s growing, loving & nurturing a basil plant – even if first instincts of low self esteem tell me it will DIE within A WEEK (but yet it hasn’t. It’s been 11 days. Woohoo! :p)

    You have every right to feel what you do when faced with all the criticism, debate & noise – they are valid feelings. BUT I also want you to know that for every person that throws criticism your way, there is also another person who’s been encouraged by your family, & benefitted from your story. 🙂 I’m one! (raises hands and waves frantically)

    Starfish story logic – you can’t (expect to) touch them all, but you can make a difference one at a time .. as your sharing has done, to me!

    Hugs to you, Steve, A&J ❤

    Please continue to share .. I can't wait for more updates on the book 😉 (so pls don't let the negativity discourage you from getting THAT out ..)

    love to the princess & the ninja!! 🙂

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  8. Everyday I pray for your child. You keep doing what you do. Negative people do not matter. Just live your life, believe, and take care of that precious little girl as best you can. Give her a little hug from me X

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  9. I think of all of you frequently and know my life has been enriched immensely by your sharing. I love pink also, and think that from now on, I will always think of Julianna when I wear pink. Love to all. Ann Brennan

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  10. Michele,

    if this blog, instagram posts, articles, etc. have shown something, is that you are doing the best you can to help Julianna enjoy life, to be surrounded with love, and how much you have done to help her feel as good and confortable as possible, and most of all, you respect her choices. She’s no ordinary child, because she is way more mature than the ordinary 5 year old, I love her thoughts!

    Everything around her is about life, and I’m thankful that you have shared.

    How can people that are not in your position criticize, don’t listen to that noise, everybody’s case is different, it would not be fair to compare.

    Yet you have time to tell the world that there are other families passing through challenges too, and maybe they might not like to tell their story but I’m sure that yours is going to help them somehow.

    Thank you for sharing, your family story is inspiring and I respect you so much for the way you are dealing with everything.

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  11. I am so sorry that you have to face negativism from people who so freely assume and judge yet they haven’t faced a tenth of what you deal with. I can’t imagine one single person on the face of this Earth doing things any ‘better’ than you are doing. I hope you always carry with you that you ARE doing your very best, every decision is based on your daughters well being.

    I think what critics fail to rationalize is that you (your family) would do or give almost ANYTHING to have your daughter healthy and not battling such a unfair horrific disease. Critics are not qualified to determine what’s right in YOUR family. I pray for your family and want you to know that I so admire the strength you display. Your love and devotion radiates through your posts.

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  12. Thank God you have chosen to share your life with the world. You have unimaginable grace. I do not presume to know anything about what you feel about what you are going through but your blog has given me a small insight into the suffering of others and has made a positive difference in my life.

    God bless you all.

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  13. You just keep doing what you’re doing. Those of us who love you and admire you would never judge you or tell you you’re doing it wrong. I’ve never walked in your shoes. It would be totally inappropriate for me to act that way. I love your family and admire your bravery and strength and love. Bless you all!

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  14. You wrote “Some will say that we are teaching Julianna that life is not worth fighting for”

    What those people fail to understand is our life here is just a placeholder for real life in Heaven. Julianna already knows this to be true because of what you’ve taught her.

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  15. Thank you for being so brave as to share your story. I pray daily for your family and for that precious girl of yours. The ones who like to criticize have no idea what you are living through, so pay them no attention. Your family is all that matters. Again thank you for sharing Julianna with us.

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  16. God bless all of you and may he guide your through all decisions that may arise. Out of every 1 person with anything negative to say to you, just know in your heart a million more support you and your family. No one knows what you are going through day by day except you. Prayers always…..

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  17. God bless you every day. I cannot fathom your troubles but I want you to know how very deeply your sharing touches my heart. I pray for all of you to have strength in your honesty every day. Even on open land the wind can be against you

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  18. I want to commend you ALL, Julianna included, for your humility, faith and courage. Not only for sharing your story, but also for sharing your fears, struggles, and your strengths, as it is easier to share the “God is good” moments than the “it is difficult right now moments.” I am a hospice chaplain, and so I highly respect the decision you as a couple, family, and Julianna as the young lady with the terminal illness have made together to fight – fight for dignity, for respect and for time together. I disagree that you are not fighting, as I see the fight. You may not be fighting for survival, but Julianna is winning. She is defeating her illness in a different way, as she is getting her dignity as a beautiful young woman back in snippets and snapshots, and you as a family are as well in that you are allowing her to be a young woman and child. What an amazing job you all are doing, and know I keep each of you in my thoughts and prayers every day.

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  19. I too have experienced the power, uncertainty and criticism associated with having to make life changing decisions about my child. I have lost two sons at birth, both of whom we knew would not survive long, if at all, after birth. They both had a 100% fatal condition (at the time) and currently there is one known survivor in the 70 or so years since their condition was first medically recognized.

    We had many questions and decisions. You are right in so many aspects and one of the worst parts is the second guessing of your own choices. Later there may also be guilt and regrets as you relive those choices and the alternatives. It’s heartbreaking and the best you can do is to consider all information, experience all emotions and then follow your hearts which it sounds like you are doing.

    You will always be parents to your sweet daughter, no one but you can understand or judge that relationship. No one. Thank you for your bravery in sharing your story and talking about it so openly. Death makes most people uncomfortable but it is a part of life and living. Julianna will be in your hearts forever and no one can take that away. Hold her tight and shut everything else out.

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  20. You and your family are making challenging, brave choices. I am deeply moved by how thoughtfully you are pursuing your path and your courageously you are sharing your story. Prayers for you all, Michelle, especially as you begin to garner more attention for these decisions. May the Lord use your story to encourage, bless, and stir the hearts of many others towards him. And may he tangibly encourage and protect you along the way. You all are very much on my mind and thoughts!

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  21. You are such beautiful people. I came across your story on CNN this morning, and I am so heartbroken for you all. I have a toddler, and I cannot possibly imagine what you have had to go through. Thank you for sharing your story. Thank you for sharing your tears and your joys and your strengths. Do not listen to the people who judge you, or your incredible daughter, for her choice. It is hers to make, not theirs, and they cannot possibly begin to fathom how hard it must be for you both to honor her wish.

    I pray that someday, I will be able to meet your beautiful daughter, when we are all finally with Him.

    Thank you. I am praying for you all.

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  22. Thank you Snow family for sharing such personal details of your daughter’s illness. Julianna is a beautiful girl and despite her tender age, she seems wise beyond her years. I bet not one person who read your story has walked in her shoes so therefore have no right implying that Julianna does not know what she wants. Please continue to share your story and may God bless you as you navigate through this journey that no parent should ever have to navigate through. Her decision to want to stay home tells me that you have done an amazing job parenting and caring for your precious little girl. I will keep her and all of you in my prayers.

    P.S. I too have a precious daughter and her name is also Juliana

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  23. God Bless you all! You are going through hell and are handling it with grace and dignity. I’m so sorry people have judged you and made you feel badly. That is so wrong. You are doing the best you can in the most difficult of situations. My prayers are with you all.

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  24. You are showing the ultimate love and respect for your child and the wonderful gift her life is to your family. I lost a brother when we were both young, and loss is dealt with differently. When I began having children, I began praying for the ability to love my children in a way that I also respected their life. I felt like this would help if I ever had to face difficult decisions such as yours. My respect and prayers are with you, your husband and the beautiful Julianne.👸

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  25. I just finished reading your touching and powerful story in People magazine.
    My son was 5 when he passed away 15 years ago from a very aggressive cancerous brain stem tumor.
    We spent many many long days in the hospital and had many discussions about Heaven, Jesus, God and angels. He passed away peacefully knowing he was going to live with God in Heaven. Although I miss and think of him everyday, I know that we will be together again and that gives me peace. In a short period of time, my son taught us so much about love.
    Thank you for sharing your story and your beautiful daughter’s life with the world. I admire your strength and courage. Your statement “Every parent who is in the awful situation of the death of your child before you, you are in hell” is so true. No one understands the pain you and your family are going through but you. I’m sad to hear that there are so many judgmental and insensitive people making negative comments.
    God Bless you and sweet Julianna! My thoughts and prayers are with you all.
    I live in Camas 🙂

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  26. Thank you again for your powerful words. You and your family are unique, and you are helping many more than you know. You are witnesses to love and devotion.

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  27. Utmost respect to you! I read your story in People magazine today and it touched my heart. I have been reading your blog and I am so in awe of you, your family, and most of all Julianna. I have cried a lot for your pain, and for how you find happiness in all that you are dealing with. I wish all the best to you, in these, the hardest of times. May you have many more of the best memories with J.

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  28. As everyone here has said, I appreciate your story and I am so glad you shared. Not just for us, but for you. Pain this real is often too hard to share and the courage you show is extraordinary.

    Your story touches me in 2 places. One is the joy in Alex & Juliannas’ relationship. My brother was 3 1/2 yrs younger than I, and we were so close when we were their age. We moved a lot but we always had each other. We built forts, played intricate imaginary stories with our toys, and I would dress him up and comb his hair for hours. We grew apart as teens but came back together later as we both had kids. At 42 he was diagnosed with stage 4 cancer and died 9 months later. I can’t tell you how blessed I feel to have honored his wish to die at home, in his own bed, with as much dignity as we could give him and all our love and support. If you had told me I could go through that a year before he got sick, I would have told you pigs could fly. With tears in my eyes, I thank you for reminding me how much I loved my brother, not just by sharing how much Alex & Julianna love each other, but also by the amazing sacrifices you are making, as a family, to honor Julianna’s wishes to be at home.

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  29. My hair dresser just happened to give me this issue of People today while I was waiting on my hair color to set. I cried. We lost our son to SMA back in 2009. We were the parents who tried to make the best decision for us and that was not the popular one. I saw all the Dear Julianna letters and I’m sorry the MD community feels the need to do that. Sending big hugs your way. You’re doing what you think is best for your daughter and that’s nobody’s business.

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