I’m on the other side now, in the club that no one wants to join.
I have grieved before, but this is different. What we have done these last three weeks – what we have had to do – goes against nature. But it happened, and we go on, not knowing what that really means.
I still can’t believe she’s gone. I know she is because the house is ridiculously quiet now. It wasn’t just the soft hum of her machines: it was her voice. “Mom! Mom!” As soon as I walked in the door, she called for me. Sometimes it was loud (thanks to the mic), and often it was very soft…but I always heard it. She knew that I needed to shower after work before I could touch her (no germs allowed), but she insisted on seeing me and sharing the latest thing. It could be a new toy, or an old toy doing a new thing. A new hairstyle or dance move. There was always some new drama (with her toys), a new observation, a new word. The supply was endless, just like her love.
And that’s the hardest part – knowing that there will never be a new anything. What I work on now is memory, legacy, meaning – some new direction that honors who she was. I will share this with you when it takes form. I want something big. Julianna didn’t do anything timidly or half heartedly, and I won’t either. Not anymore.
In some ways, I think that I’m doing too well. I went back to the office after one week. I could have taken more time, but I wanted to go back. It’s good to focus – hard – on something else. I’m more patient now, a better listener. It will make me a better physician (and person), I think, but the price was too great.
I know now what heartache is. It is a literal ache. I have felt it before, but it was fleeting. This unnatural event has made it settle. It’s a heaviness, and it’s oppressive. I have to concentrate to take a deep breath. It doesn’t leave, this physical ache, until my mind focuses on something else. And when the defenses are low, it’s not possible. So I go to sleep, but not for long. My body clock is reset, it seems, and it doesn’t want me to sleep much. This horrible loss has to be acknowledged and worked out, so it demands that I grieve.
They say that anger is part of grief, and it’s true. I’m not mad at God, and I’m not mad at any person. I am mad at CMT, mad at our situation. I am grateful for the eighteen beautiful months we had in hospice – it was longer and more delightful than anyone imagined. It was a gift. But I wish that we didn’t have to make that choice.
Choices bring me to the here and now, and they demand action versus languishing in the “what ifs?”
We love talking about Julianna, so we do it – a lot. Little Alex continuously wonders out loud what she is doing and shares new memories (Julianna had a lot of “secrets”, it seems, and they were adorable!). This weekend, I chose to make cauliflower fried rice, the last meal Julianna watched me make. I wondered if it was wise (should I really be chopping vegetables with eyes full of tears?), but her voice popped into my head: Come on, mom. You can’t cook many things. You have to make it!
Some things hurt too much and I choose to ignore them – for now. Recordings of her voice, video clips…she was so alive. It’s too much right now.
Choices…intent….connections. And always, love. Those are the things that matter.
If it’s a picture I don’t remember, I’m counting it as new. It was probably taken almost a year ago. I think she asked me to take this during a treatment because I told her that I missed her little nose.
Julianna Yuri 
In terms of a legacy, and continued remembrance of Juliana, I think you should seriously consider writing a book about her life, her witticisms, your journey as her mom, etc. Her story is certainly out there, via CNN, this blog, and even the KBS documentary. But, still, I think you have a way with words, and you could capture even more of her life if you dedicated an actual book to document it so others might read and learn from it if they’re facing or going through a similar situation. You have a unique perspective (and talent) for telling J’s story. And you’d be great at it. It might even help bring a further sense of closure to your grief. Maybe it isn’t something to explore right away. But maybe someday.
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II have tears as I read your writings and cannot imagine how you feel!! One thing I do know is that your baby girl touched many lives and lives on in love!
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Whatever you do, I know it will have a Julianna spin, but also. I have some examples of parents who have done/are doing some amazing awareness raising, fundraising, supported research.. You have already reached many of us, Julianna has touched us through the blog, CNN, People.
I agree that a book could be one vehicle .. you are a most engaging writer and your whole family as inspiration.
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I also cannot read this without tears in my eyes. I feel your loss much deeper than I imagined was possible, considering I don’t know you and never actually knew Juliana, But your writings about her have made me feel like I knew her. And I am truly going to miss frequent doses of new things she would come up with. She was a unique one, that’s for sure! You were blessed to have had her.
I have never lost a child, but I did lose my husband to cancer almost five years ago. The pain of grief is very real. And while it definitely does get better with time, I am sometimes surprised by its intensity, even now. The episodes are infrequent now, but still very painful and unreal. I am obviously very accustomed to being alone now, but I still find it hard to believe at times that he is actually gone. Such a strange concept.
Thank you so much for sharing Juliana with us. She was an amazing gift to the world and a blessing to all who got to know her — even if only through your writings. I regret that I never got to meet her in person.
May God bless you and your family as you go through this difficult time.
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Yes I too never met you and Julianna, but through your writings I feel very close to Julianna. I enjoy seeing her pics, wonderful nails, pedicures and sparkles in her hair. Julianna was truly a gift, a special child that brought everyone happiness.
I have never been so moved and touched by a story since your daughter Julianna. I cannot seem to forget about her, the sparkle in her eyes, her smiles, her love for her toys and the love for her family was epic ( like you had said in your blog) .
I know there’s probably nothing I can say to comfort you in this difficult time. Losing a child- there are no words for! Please know that Julianna is in my heart. Julianna has taught me a lot about life, I’m so grateful to have had her in my life, through your blogs and now her book.
I think about her often, what a brave little girl she was, but happy through it all. What she endured in the last 5 years makes me mad and sad! #stupidCMT
Please know you and your family are in my prayers.❤️🙏
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I have read Julianna’s book to my girls number of times, it’s part of our regular bed time reading. What they are asking about, often, is what happens next? Perhaps, when the time is right, there could be new stories. As always you and all the parents who joined that unwanted club are in my prayers.
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Sending love and hugs.
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Juilanna was such a blessing. You and you whole family are wonderful. Praying for you.
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I know how you feel when it comes to videos and recordings of her voice. My grandpa, who has been dead fifteen years as of September 17, still gets me choked up when videos of him are played. It does get easier (although I don’t know if it’s the same for a parent who’s lost a child), but there are still moments when their death feels raw and new.
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I have been following your journey will Julianna since the headlines came out that you were going to allow her to decide. God bless you. God bless your family. My daughter, Annika also began asking about precious Julianna and my heart just ached for everyone so near and dear to that special little girl. Thank you from the bottom of our hearts for continuing Julianna’s legacy. I attached a picture of my 4 children and I can’t even begin to imagine the pain and suffering that you all are going thru from this point forward without her. That little girl of yours has touched our heart, as I am sure she touched millions, in a very deep way. She was beautiful. She was witty, bright and amazing. I know you already know all of that, but I needed to tell you also. You did the right thing by Julianna and I know she loves you for that. She was so blessed to have you as her family. You took care of her needs like no hospital would have. Please know that you have friends from all over the world. We are just one family from NW Pennsylvania who wanted to confirm what you already know. Julianna is at peace now. May you continue to draw from strength that only God can give you to move on with her legacy. Julianna will NOT be forgotten. With all our love, The Mears family
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J will NEVER been forgotten……..
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Hi Michelle!
I’ve alluded before to the passing of my high school teacher (I can’t remember which post, but I think it was a comment on one of the blog posts. Instagram wouldn’t have had space for the comment, it was quite lengthy).
I thought I was okay. Sure, when she passed I cried for three whole days at the time. She was an amazing teacher who taught me for 3 yrs & definitely left a legacy/an impact on her students when they graduated, but nonetheless, was Not a family member. So I was still surprised at myself & my intensity of grief. But I thought with time, these would have faded, like you know, we all have lives to live and it’s going to be unfortunate and inevitable, but I’ll find myself emotionally detached soon enough, I’ll get on. As an interim measure, I decided that any time for now where I feel/mourn the loss, I’ll take it because it speaks of three wonderful years in high school where being her student was my joy, privilege & blessing.
Guess what. I ate all my words last weekend when I went for a musical at my alma mater, which she had been coordinating before she passed. It was an all original production based on school history (in celebration of our 100th anniversary), & she’d been writing the script & songs. So remembering her at the time was SO HARD. I found myself re-reading her tribute page, to realise her ashes had been scattered at sea on Good Friday. My heart dropped even more, even as I had already been crying non-stop after I came back. Yeah haha I went for the school event on Saturday evening, spent all Saturday night & Sunday night crying about it. It wasn’t intended that way, things just started inconspicuously enough hurhurhurrr. And yes – I can’t bring myself to listen to the soundtracks of previous school musical productions, especially the tracks she sang. I still haven’t uploaded the soundtrack from last week’s event onto iTunes/Google Drive for this one reason!!!
I don’t know why I found myself so affected by the sea burial thing – I KNOW that she’s already not on this side of eternity, she’s in Heaven with Jesus, they probably have harps wayyy better than any she could have played on this side of eternity. That sort of thing. I KNOW she has been redeemed from the wages of sin – because she was born twice, she only dies once. I just know that I was affected, like (while it was never my decision to make), what do you mean we have nothing to remember her by, now? No urn, no ashes?
So yeah. Grief doesn’t get easier, I’m afraid. It just seems to, but so far I doubt it does. I miss my teacher, and only now do I realise that … I never thought someone’s ashes would matter. Sure, it’s just dirt and dust but .. it’s nonetheless a concrete reminder of the person. I’ll always remember her best self (her orbituary photo was the picture she used for the submission of some teacher’s award!), her smile, her love for God and people. But I hate it that I don’t get to be reacquainted with her in the school’s centennial celebrations. I hate it that my pastors’ daughters (now in the affliated elementary school, age 9) will never get the same amazing privilege of being her student. I hate it that I couldn’t introduce the girls to her, & proudly proclaim my privilege of being her student. I hate peritoneal cancer so damn bad – I didn’t even know it was a Thing until .. she passed from it, heh.
But on the other hand, (& I couldn’t really tell anyone this b/c not many people in real life know that Julianna was my virtual friend lol) – the thought of my teacher & Julianna possibly meeting in Heaven, with my teacher playing ‘Hark the Herald Angels’ on the harp, & Julianna singing along .. is such a beautiful thought.
But I still miss them .. it must be so much more difficult on your family in relation to J.
Meantime I don’t know what to do with myself (! but it’s true), so as I realised that you submitted the tea party letter to Julianna on The Mighty, I’m planning to submit the tributes I wrote on my teacher’s memorial page too. I don’t know, it feels like plausible closure .. ish. For now.
I hope you’re both taking good care of yourselves & Alex ❤ It's definitely a +1 from me re. documenting Julianna's journey in a book via her Mommy's eyes, but only whenever you're ready.
Sending love to your family – Alex has been such a trooper, given the intensity of the loss & his tender age.
hearts & hugs (& sparkles & ponies) ❤ ❤
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Welcome to the club. I’m so sorry you had to join us. ❤
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I never met J, but feel like I knew her so well, her strength, kindness, love, and wisdom was amazing, she continues to make me smile and lives in my heart. I understand what its like to lose someone so close to you, not a child, but please continue to share with us, your pain, your happiness, memories, and new adventures to come with J’s little brother. He is a cool little guy, J loved him so much. Im not sure if this is to much to ask for, but if you read this post, is there any way you can send me one of J’s toys that you were giving away at her tea party? I will name it and it will watch tv with my 4 children. J will never ever be forgotten, please know that. She was WAY to special to ever forget !!!!
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You have such a gift for words, Julianna’s spirit leaps off the virtual pages. I wish I had the pleasure of meeting her and getting a small slice of her infectious wit, but I so enjoy reading about her. What a beautiful girl. It feels indisputable that she is right now enjoying knowing that her stories are being shared with people all over the world.
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I don’t know how you do it. I knew Juluanna through you.. Came to love her through your words. And I miss her so much… I can’t imagine your world right now. I pray that your family’s heart heals . That she comes to you in dreams, that the world knows what CMT is, and it finds a cure. I listen to the song my son composed for Julianna every day.. I close my eyes and can see her playing, running and dancing. May God give you peace and comfort soon… May He turn your grief into happiness… And may He guide someone to find a cure. Hugs always…
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Thanks for posting. I look at this site every day. I can’t imagine what you and your family are feeling, but Julianna was a bright light; I miss that light.
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HUGS TO ALL . Thank you for sharing….love to you all. I got to have a wonderful conversation with Grampa (Tom). It was great hearing his perspective too…love to you all!
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Dear Michelle: I want to thank you for sharing Julianna’s story as well as the story of your family as each of you deal with the loss of Julianna to this vicious disease. Thank you for the gift of your writing. You have caused me to know what it is to be taken to my knees by the grace and joyfulness of one child and her family – to be challenged to do better in my own life simply by witnessing the way each of you loves. I cannot imagine your pain and I am learning so much about love – God’s love, family love, love for our common humanity, from your sharing of it. I am certain that Julianna will continue to be one of my greatest teachers. In particular, through her vulnerability, honesty and endless capacity for wonder and joy (I love all this stuff) – and through her superpower -LOVE. Reading your posts, it seems that, for some time, she had been banking memories with each of you that she wanted to remind you of her love when she was no longer here to speak it. She knew how to make a moment. PANIC! no, just another adventure. Thank you – my deepest prayers and gratitude are with you all. Lisa
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Know that my thoughts and prayers are with you and your family. I am a hospice nurse specializing in pediatrics. The members of this new club you have joined is made up of some of the most wonderful loving people I have ever met. Please reach out to them. They will reach back. When you are ready to move forward with your plans for Julianna’s legacy have you considered keeping the tea party concept and making it really big like Alex’s Lemonade Stand? Deborah
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OH this is such an idea, Michelle!
You could do like a super huge tea party every year or something, either Make-a-Wish style (a party for very ill children, like J’s room) as a party where kids could meet their favourite princesses (arbitrary, but because J was like, you know, a princess) or a fundraising sort where it could be this huge tea party in the neighbourhood with the therapy unicorn & psychiatric help stand, & people could put in whatever they wanted, proceeds to CMTA. 🙂
Okay I’m just being dreamy, J-style, thinking of J-style things that are just that bit too big & bright which she would approve – like, “go big or go home, Mom!”
But for now, hearts & healing to all the Snows. hearts from Singapore! xx I really hope Alex is okay. Along with Snow family/Snow parents’ updates/coping, I’d love to know how Alex is coping too.
hearts & hugs y’all <3<3<3 x
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You posed the question of Julianna’s legacy.
You also wrote
. “I’m more patient now, a better listener. It will make me a better physician (and person), I think”
That is Julianna’s legacy. You are a better person because she lived.
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You and your family are so strong. You made all the right decisions for your precious girl. God bless you and keep you during this difficult time. None are closer to Jesus than children!
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Thank you, Michelle, for continuing to share with us who are grieving with you, Steve, and Alex. I know you could have stopped writing, after Julianna went Home. But, you now share your hurting heart and we are richer for it. I miss J and I never even got to meet her. But one day, I hope to run into her in Heaven😇
As a Mom of a special needs Daughter and a Hospice worker, who often sits at the bedside of those who are in their final hours, I know the ache you refer to. It is a pain like no other.
You said “knowing that there will never be a new anything” – but Julianna is new!! She is whole now and completely healthy, for the first time in her life. There will never be a trace of CMT in her sweet body. And you WILL hear her call “Mom” again someday.
I send you a hug every time I comment on your posts. Cling to Steve and Alex as much as you need to. You are all in my prayers.
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Continuing in prayer for you and your family.
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Michelle, you always manage to put into words the unexplainable. My heart aches with you. Your precious Julianna will forever live in the hearts of the thousands of people you have touched by sharing your story. Continually praying for you and your family’s healing.
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Hi Michelle ! I know Julianna lives in your heart forever, thinking, loving,talking,laughing and breathing every day in you ! 힘내요 😉
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On the other side, J is not in pain. On the other side, J is free. On the other side, J loves you madly. Just because you can not see someone it does not mean that they are not there. Persons in your situation tend to sleep lightly at first-, when you accept what you can not change you will sleep sounder. Just planting a seed in your family’s mind… when loved ones pass on they would want us to accept what can not be changed, they would want us to be content. In time, it happens. People say they “feel better” or similar. Some say the brain synaptic “currents” rewire. Some say time heals all wounds. Some say nature takes over, and you learn to carry on through the shock. Mercy, love, and peace will find you and your family. No words from me could ever instantly make you not hurt, yet people try to ease your pain. No words can instantly help, but i can assure you, your hubby and son, that in time the pain will greatly decrease. You and J are still a team. Just because someone is not there, it doesn’t mean that they are not there,
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