This is my favorite picture of Steve and the kids. It was fall 2013. Alex is in his school uniform, and Julianna looks like she’s participating in a roller derby.
It’s actually her school outfit, of course. Her helmet and ankle orthotics tell me that she was still able to use her walker.
Things are obviously different now — so different.
In the midst of this life-altering week, we realized that it is Father’s Day weekend. Lousy timing.
“We’ll deal with it later,” Steve said. He was right, for there was much to focus on this week.
Yesterday, we threw Julianna a tea party worthy of all the superlatives: magnificent, fabulous, stupendous. I know that it made her proud, and details will be forthcoming.
Today, it is Father’s Day. We will deal with it in this space by sharing the words that Steve delivered at Julianna’s tea party: her celebration of life. ( emphasis is mine )
The last 18 months have been a gift from God. Miracle after miracle.
18 months ago, Julianna got another cold, after having just gotten out of the hospital. We were all bracing for the worst.
But she bounced back — and not in weeks, but in days. It was almost a non-event. Other colds and challenges would come, but she continued to thrive, even though her body was failing her. Julianna’s disease was like a prison for her body.
I can only attribute this to a fundamental decision to stop trying to fix Julianna ourselves, and put our faith in God. It became abundantly clear that there was nothing we could do to save her from her disease. And we were driving ourselves into the ground trying to do that.
That doesn’t mean we gave up on medical care. Certainly not!
What we got from that 18 months was healing and growing as a family. We got to enjoy and love on Julianna, and her spirit and imagination thrived because of that love. We got to share her love with the world.
She loved getting toys, but not for why you might think. It goes much deeper than that. That toy was a tool for her to get someone to play with her. It wasn’t necessarily the playtime either that she needed.
What she needed was the DAILY reaffirmation of our love for her through spending quality time with her.
– creating an interaction,
– creating a connection,
– creating a moment
that we will continue to cherish
and demonstrating to her we still love her.
She thrived in that love. Her light burned so much brighter, and the world has seen it.
A heartfelt thanks to those who’ve helped us through this. Your portion of light has warmed our hearts and helped more than you can imagine.
Those connections are important.
Whether you’re a prisoner of a disease, lost in the wilderness of life, or tossed about on the sea of disillusionment, there will be a Light to follow. It may be hard to find, but it is there.
A Light founded in love giving forth peace.
Create that connection. Make a moment.
Last week we were living in Psalms 142. But now the prison is broken open and Julianna can soar on Angels’ wings.
Thank you.
Psalm 142:7
Set me free from my prison,
that I may praise your name.
Then the righteous will gather about me
because of your goodness to me.
Julianna Yuri 
Just hope you all have a good weekend.I really agree that S is a good father,M is a good mommy,A actually is a sensible kid.To be honest,I like Julianna,I like you all.All of you show me what is love,family love.
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So beautiful!! Julianna touched our hearts in many indescribable ways. Thank you for sharing through this journey. The Snow family is my prayers often.
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Your a great dad Steve and I know Julianna must be very proud of you. We drank tea yesterday for Julianna, i am sure she is smiling down on all of us that were touched by her. From Pedro, Sujin, and Jessica.
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Happy Father’s Day, Steve! Wise words. I’ll be striving to create those interactions, connections, and moments with my children today, too. You certainly did for Julianna (and Alex). And that psalm seems perfectly appropriate to Julianna’s circumstances. May God continue to bless you and your entire family.
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Julianna was an amazing child; Julianna had amazing parents and an amazing brother
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God bless you all.
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Happy Fathers Day Steve! The little Princess became who she is because of great parenting. I have learned so much because of you and your wonderful family. Love to all of you!
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Such a beautiful post. May god continue to bless and heal you all. Happy Father’s Day Mr. Snow
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Steve and Michelle.. I can certainly see that Julianna inherited her quick mind and eloquence from both parents and that she couldn’t have been in better hands while she was with us in this world. Her impact was deep.
Because of you, Julianna’s bright light was never hidden under the proverbial bushel basket, but shared in a wonderful way.
I would add that by going public, you have shared a whole family of lights.
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What a lovely tribute. I will keep it in my heart, and remember it.
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Happy Father’s day Steve. You and Michelle have been the most amazing parents and because of the love and care you gave to Julianna she was able to stay strong for such a long time. Your little angel is flying around heaven with beautiful sparkly wings, matching princess crown and her beautiful smile, but most importantly she is in your hearts and will always be a part of your lives. Princess Julianna such an inspiration ❤ XX
Michelle, when you get chance can you let me know how I can send you photo's of tea and cake. I can't seem to find a page on FB. Thanks X
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It’s an event page on Facebook called “Tea for Julianna”! Not immediately obvious cos I think it might not appear in the predicted searches, I think. You should press the search/magnifying glass option, see if that works!
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Jo R
Scroll to the top OG th page on the blog, click on RAW, and there is contact information there if you want to send pictures by email or even snail mail.
Lynn
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Yeah – bad timing – icky, & ew.
Hugs to y’all again & again (like I feel that’s all I can ever do & it feels so empty half a world away – but Love is a superpower & Julianna’s kisses were always kept for later when they were needed .. I suppose it’s no harm doing the same with virtual hugs. Do they have the same effect? Haha.)
& to Julianna’s daddy – Hi Steve! I thank God for your immense faith in Him (was wondering what Psalm 142 was, until I saw the quote), & I imagine that Julianna must have praised God (haha cue the video when she did that and waved her hands with all that sass, remember? Praise the Loooorrrrdddd!) as she watched you share these words at her party. 🙂
It’s going to be a tough road, Steve & Mish, but as I see all your posts, I am comforted. I hope you write because these help you cope, & not out of obligation for yr readers – writing IS therapeutic, but only when done out of personal will/choice & not obligation, which turns it into a chore. (I mean – I was going to say that I was glad you chose writing as a coping mechanism, but considered the possibility that it might be obligation instead of choice. I hope not!!)
https://www.thegospelcoalition.org/article/the-baby-given-to-women-who-miscarry – I’ll end by leaving these here, it’s specifically about losing a child to miscarriage but no less relevant for this context.
For the parents who cannot have their dearest baby (well, she is, by virtue of being the youngest. Haha.), there is comfort in knowing that there is a Baby who was born 2000 years ago, to redeem us from the curse of sin & death – that we know that because we have been born twice, we will only die once on this earth before living on the other side of eternity forever. Because in Heaven, we will not die again. 🙂
Send my love to the little trooper, I hope he’s doing well. Am thinking of writing him a letter soon – I’ll try!
Hugs especially to S on Father’s Day, & A for being a resident trooper. Love you ninja boy xx
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Thank you. Thank you for all you have shared with us over these months.
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Happy Father’s Day Steve. Juliana and Alex are lucky to have you as their father. You love will forever be with Juliana.
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Mr. Snow,
I’m so sorry for your loss this week. Your tribute to your little girl is beautiful.
I only know you through what your family has chosen to share publically, but it’s obvious that you embody everything that is meant to be celebrated in Father’s Day. You had attained every boy’s dream job (and the dream job of many girls too, I’m sure!) – something that you must have worked extremely hard to achieve, and you put it all aside to care for your little girl. It’s easy to say that anyone would have done the same – and of course a lot of fathers would have – but it’s also true that many wouldn’t.
You gave your Julianna the approval, acceptance and unconditional love that all children crave from their parents, and I’m sure that this is a large reason that she was able to remain so full of life throughout all of the physical pain and limitations. Just as you feel blessed to have had such an amazing spirit in her, she was blessed to have had such wonderful people surrounding her. The rest of us are blessed that you & your family were willing to open up and share Julianna’s sprit with us. I can tell you that I’m a better father because of it, so thank you.
-Jason
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The greatest gift a father has is to share his love. Steve – Happy Fathers Day! You are an amazing father. Beautiful words for the world to hear from a father who truly loves.
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Happy Father’s Day!! Steve you are a wonderful dad. Thanks so much for sharing. Eloquent words,so inspiring.
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Happy Father’s Day, Steve! To the entire family, I am sad for your tremendous loss. Julianna’s story breaks my heart. Know that she watches over each of you with all her love and energy.
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Let your light shine before men in such a way that they may see your good deeds and moral excellence, and [recognize and honor and] glorify your Father who is in heaven. Matt 5:16 (AMP)
Thank you, Steve for your “Words of Wisdom” at Julianna’s Tea Party Celebration in honor of a fulfilled well spent Life. Julianna was someone who truly experienced the in-depth meaning of Truly Living and Truly Being LOVED. You are absolutely 100% correct on the knowledge you’ve learned on how you can possibly make it through “whole-and not shattered” and with inner healing too, when you go through such a Life-Changing event, such as this. The way you make it through is your complete reliance and Trust in God, step by step and day by day is the BEST way.
Happy Father’s Day Dear Friend-thank you, for being such an exemplary example of a Father. Thank you, for letting your Lights so shine before us by your daily examples for almost a year. We thank God, that we got the opportunity to see such great examples.
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I grieve with every news report of a terrorist attack. I mourned the victims of Sandy Hook and Orlando. But my heart shattered into a million pieces with the news of Julianna’s passing. The Heavens must have needed a beautiful, charming, brilliant soul. I am sure she has already filled every spot with pink and purple, with glitter and spark ly things and with her love for her family, every person she ever met and those she had yet to meet. Thank you all so very much for allowing us to share in her life.
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Praying for you and your beautiful family. Julianna will never be forgotten.
“She went like a radiance through a dark wood, which was henceforth bright to me, from knowing that such a creature was in it.” – George MacDonald
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Dear Steve, You are a Hero Dad. You willingly served our Country, and that makes you a hero. However, you were chosen by God to be the Dad of one of the most inspirational children in recent memory. The fact that He knew that you would be the perfect dad for Julianna makes you a very special Dad indeed! I admire your place in this world and the father that you are, both to Julianna and to Alex. Your pain is unimaginable today, but hopefully your joy in being Julianna’s Dad and the inspiration that you have provided will live on. Happy Fathers Day.
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Happy Father’s Day Steve!
And a great photo of you
with Julianna & Alex
Valentino
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Thinking of all you. You are special! Julianna lit our world and her candle will light forever in our hearts.
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Every day that goes by now may seem like a day further apart from her… But the mind will loose temporal bearing after a while… And then you will feel better- you will not feel like every day is separating you from her. //// I lived in Korea for a year like you did. //// Thinking of your family lately, wishing it was in my power to help you. It is a strong feeling I have… The feeling that Julianna would want her family protected from any strife//// Please take a moment to realize that your family members …. the ones right in front of you….are fighting silent battles that you are not aware of. Give each other a little space…room to grieve however it takes shape, however it temporarily makes one act. Be there for each other, it is what she would want. ////
Feeling sorry for yourself should be kept to a minimum if possible. Of course you kind of feel sorry for yourself…who wouldn’t??? As one who has seen massive loss…I can verify that feeling sorry for yourself hinders your spirit so much. Just a humble reminder.//// Sorry I can’t hit the return button on my phone so I just use slashes for a new thought//// didn’t know if you knew this poem (haiku) but it says a lot. The flowers I see return to the branch. Oah, butterflies! By Moritake // the poem is a person walking down a path. Ahead, it looks like the dead leaves /flowers are returning back to the branch, (yearning for past) but then the person realizes that it is butterflies flying up to the branch, not flowers coming back to life. The butterflies though are majestic, are in the moment, and brings the persons mind back to present. It is a poem about loss. /// Just letting you know that i am thinking about your family and i wish I could comfort you. I love you all, and I’m just reminding you to take care of yourselves, day by day. In time the pain gives way to clarity and content mind. Till then, just know you are not alone.
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Happy Father’s day Steve，julianna really too beautiful, and I can not bear her picture, God so unfair to her. Thank you for sharing, you’re a great father, so we all love julianna
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I eat about 3 bites then i throw the rest of the food away. I feel guilty that I am able to eat.
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Dear Steve,
Thank you for your message. You are a role model to father’s everywhere. The hours each day you spent playing, laughing, caring for and loving on Julianna will never be forgotten. Precious time so well spent and beautifully remembered. What you two have is so special- you understand.
Sending good thoughts and kind wishes for today and the days ahead. Michelle, thank you for continuing to reach out to all of us and for sharing these tender moments. We are all here, praying and sending so much love. Your family is amazing. We are so grateful to you for sharing the awesome force which is Julianna with all of us. We are better, wiser, more compassionate and sparklier for having known her. You each have taught us something important about being our best and brighest self.
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Dear Michelle, Steve, Alex, and Halmoni,
I just read your blog about Julianna’s passing. Words cannot describe how broken hearted I feel. Words at this moment are probably not much comfort, but I can see how much God loved all of you through his gift of love to you … Julianna. I feel sure that the courage and love you showed for Julianna’ s fight to survive has strengthened many other parents who are fighting for their children too. That is a gift from God and his little Angel Julianna. The fact you shared Julianna’s love, life, and struggle, truly enlightened all of us who followed your blog. That is another gift from God and his little Angel Julianna. The fact that all of you will always have wonderful, loving memories to cherish is again another gift from God and his little Angel Julianna. Finally, the comfort you will come to know that Julianna is watching over all of you with God in Heaven, is the greatest gift of all from God and his little Angel Julianna!
Those who commented that “God is unfair” are absolutely wrong and do not truly understand God. I am sure Julianna would agree with me, especially now that she truly knows God.
I will continue to pray for all of you.
Barry
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