August 25th

In one month, Julianna would have turned six. August 25th will never be just another day, especially this year.

When your child has a monstrous illness, birthdays can be tricky. I’ve had some marked by tears and bitterness (they mix horribly with cake) and others full with joyful gratitude (much better!). Last year was a good one, probably the best. It was special, and we knew it. (Think, for a moment, what your life would be like if you believed that every day is precious, and not a given. This is how you begin to truly live.)

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5th birthday

This year, August 25th will obviously be different. I have thought a lot about it. How will it be? What should we do?

Sadness is inevitable, but it can’t be the overriding theme. I’m not trying to deny or repress or not “deal” with it. It’s this: Julianna would not have wanted it that way.

Julianna knew loss. She lived with a body that continually let her down, but she never felt sorry for herself. I don’t think that she even understood the concept. This didn’t comfort me at first. In fact, I resented it – why did she have to be so brave?

I’m not sure when it changed. All I know is that things got so much better after I stopped obsessing over “fair” and “right” and focused instead on the magnificent child right in front of me. She just wanted to play and hug and have fun. Above all, she needed to be loved and to give love. When I succumbed to her love (really, God’s love), everything became brighter and sweeter. Hope returned, and this is why we are standing today.

I didn’t put it all together until I wrote a letter to Julianna. After she died, I had an overwhelming urge to write — something.  I needed to tell her that I was OK. I didn’t know why I was OK, but once I started writing, the answer was clear: LOVE.

And this, my sweetheart, is your greatest gift, your legacy. More than anything else, you loved. Your love was so expansive, so thorough, that it gave you a lightness and joy that was other-wordly.

 Love is a superpower. It is the reason and the answer. It keeps broken hearts beating; it turns judgment into kindness, fear into courage, grief into joy; despair into hope. It is the greatest.

On August 25th, Steve, Alex and I will each do something that reflects and spreads Julianna’s love. We’re not sure what it will be just yet. It will probably be a small but personal act. Julianna made people feel special, and she had a way of giving you just what you needed – even before you realized that you needed it. It seems like a tall order, but we have a month to figure it out.

Please join us. Do something on 8/25 that would make Julianna happy and proud. It can be big; it can be small. It doesn’t have to cost a dime, but it will require kindness, some time, and perhaps some creativity. If you have a great idea, post it — on the comments, or the Love is a Superpower FB page. Or, keep it a secret (Julianna liked those too…).

Just do something.

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Summer 2012. Not her birthday, but the hats were fun.

(And buy a shirt too 🙂  Available only until 8/11 — $20– all proceeds go to CMTA.

15 thoughts on “August 25th

  1. I have marked Julianna’s birthday on my calender, and I will do something to honor her memory. Love and hugs to you and your family, as always.

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  2. We will most definitely be remembering Julianna on this day and everything she stood for. Her LOVE is exactly what we all need each day, perfect Jesus Love that children seem to understand most. Our family is forever blessed by yours, and we are excited to be a part of your continuing journey to fight cmt. 💟

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  3. Yay, so thankful for the Love is a Superpower page – I was going to ask if/how international readers can take part. Plus, now we can all keep doing stuff to continue Julianna’s legacy, without having to resort to various event pages. & we can put pictures, too! (vs the blog, we can only comment on the posts with words)

    Thanks for the heads-up, I now have a month to start thinking about it – thinking of simple but sparkly, I’ll try to put smtg together! & then I’ll think abt whether I want it secret or shared 😉 Also, I love how Alex is also doing a Thing of his own for Julianna’s birthday – you go, ninja boy & I wish I could give you the hugest hug ❤

    On a side aesthetics note, I noticed that external hyperlinks are CMTA-JSnow-bands type of hot pink now, good going haha 😉 hugs to my favourite virtual friends! ❤ (I suppose, with J being my mermaidprincess little virtual friend, by extension her family becomes my friends too xx)

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  4. Challenge accepted. Now I need to talk to the most qualified people in my family aka my kids to come up with something simple and yet awesome.

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  5. I am not sure how I found your page….maybe through Instagram. I guess it really doesn’t matter. Julianna is love….God’s love. She is amazing. I use the word “is” instead of “was” because her love is here. It is in your writing and it is in my mind as I think of her. I look at this website every few days to see if there is an update. I have grown children with grandchildren, nieces, nephews, great nieces and nephews and family that I love. I can tell you that we have not experienced a loss as yours. While my parents buried a child, their child was 36 years old and I was 34 when my brother died. Both of my parents have passed and in the last year I feel God’s calling in trying to make an impression somewhere. Whether it is buying a t-shirt to help fund research such as yours and just adding some kind words or a gesture to help someone hurting or in need, it is on my heart to do each and every day. So on August 25th, please know that I will be doing something to help someone else in Julianna’s honor. It is my honor to be able to share your life from your website. I pray for you, your husband and Alex. Julianna continues each and every day through you and your family….through pink and sparkle…she is with us all through God.

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  6. Happy birthday beautiful ptimvrdd just learned that oihave brain cancer they will be operationale in theormorming
    Im not afraid because I knowthat Julianna will be near. Love is a super power

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  7. I’m in !
    I will be planting the perfect Julianna flower, plant, or bush. Will be perennial, pink/purple in color, can’t get taller than 3ft. How tall is she? I’m with Jo (above) in that Julianna’s love “is” here, not “was” here.

    It will have little trinkets (fairy,heart, teacup, something sparkly etc.) hidden in it. I will transpose my fave photo of Julianna from the internet onto something awesome that’s weather resistant to lay beside my little creation. OMG!!! Maybe a little Christmas tree…I’m brilliant! Yep, I think it will be a small Christmas tree that I can do something special with every year on her birthday.

    Maybe it could be like a little contest….Michelle picks a favorite and the prize could be a visit from Michelle, or Michelle, Steve and Alex. Wow, would that be awesome or what? I’ve had many “from the heart” conversations with Michelle…I’ve often thought I need to put “meeting her” on my bucket list.

    I will always look forward to hearing from you my dear Sister Michelle.

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  8. We will do something nice on Aug 25 in Julianna’s memory. She is a true angel that will never be forgotten. I have found new courage in my life because of her, she showed us that even in hard times we must remain positive. Jessica’s birthday is also the the 25th only it’s in September. Your friends Pedro, Sujin, and Jessica.

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  9. I plan on making an extra special moment with each of my children that day in honor of Julianna. I’m also going to look for opportunities for random acts of kindness/love throughout the day with my co-workers and anyone else who crosses my path. Nothing specific yet. Just going to roll with whatever seems appropriate at the time. However, I have given some thought to bringing in a dozen or so “sparkly” cupcakes for the office. That might give me a chance to tell others about Julianna and her story.

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  10. You can count me in for Julianna’s birthday, I will make an extra special effort on that day to do something in memory of her! Love is a superpower indeed, and I will be spreading the love on 8/25. Thinking of Julianna, you and your family often- sending love and prayers your way. -Bridget

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  11. I also marked Julianna’s birthday on my calendar and for sure I will so something special.

    Julianna has taught me to love immensely and take everyday as a gift . I truly thank you from my heart for sharing Julianna to us.

    For some reason when Julianna past, I started writing again as well. I use to write as a kid, but nothing fancy, just a journal of my everyday life. I cannot write as beautiful as you Michelle ( I wish I can)you just have a way with words. This is a reason why I look forward to your blog.

    Julianna is a true angel. I hope she is running around, playing, laughing and most certainly watching over Alex, and your family.

    I ordered the shirt and cannot wait to receive it. I read the book to my daughter before bedtime so she can dream of beautiful adventures!

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  12. I really want to create a video to honor Julianna, but I have to get permission before I Could create it. The video will feature princess themed songs, since J loved princesses!

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  13. Julianna will always be my little Hero, bigger than John Wayne, Mother Teresa, Ronald Reagan, or anyone else. She stands taller in my heart than anyone past, present, and I would venture to say in the future. She gives me strength and fortitude. Darn right, I’m going to take a day of leave on the 25th and spend the day and evening doing different things and end the day with a small barn fire for my little hero, Julianna Yuri Snow. Happy Birthday little one, I will remember you always.

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  14. On Julianna’s birthday, I bought donut holes for everyone in my office. I forgot to wear pink, but I did wear fancy shoes in her honor. I kept Julianna and her family and her motto (Love is a Superpower) in my mind all day. Happy Birthday, Julianna!

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