Part One: Messed Up
Parenthood is full of firsts: birthdays, words, steps, bus rides, etc. These moments are anticipated and special.
If your child dies, there is a whole new set of firsts, and they are not welcome. You anticipate them still, but with dread.
How, for example, does a parent celebrate (and make no mistake, it needs to be celebrated) their child’s birthday when they are gone?
For me, the answer started with anger.
A few weeks after Julianna died, the funeral home called to tell me that her ashes were ready. The woman on the phone was perfectly nice and professional. Following the usual rules of phone etiquette, I thanked her.
As soon as I hung up, I was mad.
My (lightly edited) first thought: What kind of a crap world do we live in where a parent has to get a phone call like this? This is so messed up.
My second thought/call to action: We’re going on a trip. I’m buying the tickets today.
And I did. And we did.
Part II: Wanderlust No More
From the time I was a young adult, travel was a huge part of my identity. It was one of the things I missed most after Julianna’s disease declared itself to be a joy-sucking beast.
At first, I was resentful. I felt like my wings were clipped and I envied others who could come and go with such ease. (Ease — even if your flight has been delayed or there is traffic. These are healthy people problems.)
Later, when things were into more proper focus, I didn’t care if I ever travelled again. Please, let my frequent flier miles expire. I didn’t want to “get away.” Everything that mattered was in our house. Often, it was contained in a single pink and purple room filled with toys and stories and love.
I knew that the freedom to travel again would come one day, but I wished that it wouldn’t. I didn’t want it. The cost would be unbearable.
Part III: California Playing
The call about the ashes was a catalyst. I had to do something to counteract the horribleness of it all, so I took the plunge and planned a trip.
We decided to spend Julianna’s birthday week in southern California. We needed sunsets (I’ve always been partial to the Pacific variety), friends – and amusement parks. Lots of them.
Pacific sunset. Have sunsets always been this pink and I just didn’t notice?
Love is a superpower. It makes bad guys good. — JYS
Julianna’s favorite animal (if she ever were to admit to picking favorites) made with Steve’s favorite toy.
Ferris wheel over Santa Monica.
We skipped Disney. This is, of course, the most iconic of amusement parks, but I wasn’t sure that I could face it without Julianna. Maybe one day, maybe not.
We did see a castle, though: Hogwarts!!!!!!! One of the highlights of my life 🙂
Part IV: Julianna’s Birthday.
On Julianna’s birthday, we dressed to impress (Julianna, that is. We all wore pink) and drove to Santa Barbara. It’s one of the most beautiful cities I’ve seen, and the drive includes some stunning ocean-hugging stretches of the Pacific Coast Highway. We needed beauty on that day.
We went to the Santa Barbara Mission. More beauty — and peace.
Lots of pink roses
Inside the chapel. I don’t know if it was just the lighting, but the altar looked pink. In the middle, a lamb — another one of J’s favorite animals (“lamby”).
And some levity.
At lunch, our server noticed all the pink and asked if we were celebrating a special occasion. There was a moment of awkwardness as I debated myself: how do I answer this? Do I tell the truth? It’s like dropping a bomb sometimes…
Sweetly and simply, Alex answered. “It’s my sister’s birthday. She’s in heaven.”
The server nodded in understanding, and instead of distress, there was a free birthday sundae. (Ice cream was also needed on this day).
We ended the day watching the sun disappear over the Pacific.
The ocean can make a poet out of anyone. It’s all been said before, and by better writers than me.
I’ll add only this: she was there, and she was free.
“Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.” — Harry Potter and the Prisoner of Azkaban.
Julianna Yuri 
Michelle,
“The life given us by nature is short, but the memory of a life well spent is eternal”! Cicero
Blessings to you and your family.
Bernard
Nairobi, Kenya
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Happy Birthday Sweet Julianna
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This post brought me to tears. I feel so much sadness for your loss. I am also so touched by the beauty of how you remember and honor Julianna and how you carry her with you today. Prayers and love for your family, always.
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Well said Alex.
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Thank you so much for sharing your special moments and thoughts of your beautiful baby girl! As a parent, I cannot imagine the pain you feel but think it’s wonderful how you celebrate Julianna’s life! I know she is right beside you the entire time! Always sending love and prayers to you and your family!
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I’m sure Julianna approved how you celebrated her birthday. Big hug!
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While fighting cancer, Coach Jim Valvano once said, “If you laugh, you think, and you cry, that’s a full day. That’s a heck of a day. You do that seven days a week, you’re going to have something special.” I think you and your family have been living that for the past several years…and will likely continue to do so for the foreseeable future. The more amazing thing for me, however, is that through your words and stories shared here on the blog, you’ve enabled us all to feel and live those same things. Not in equal measure, of course. But Julianna’s life, your grief, and how all of you continue to deal with it are something truly special. And I’m continually blessed by all that you share. Thank you.
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Im sure my boss wonders why I’m crying at work quite often. My heart aches. I want to grab you all and give you the biggest hug imaginable, especially that precious little guy Alex….. But you find light every where you go….. pink light, and I DO believe it is little Miss Julianna saying “Im here and I feel so free”……Love as always from Kansas.
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Happy Heavenly Birthday Miss Julianna! Sorely missed but never forgotten,
Until we meet in heaven,
Char
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Yes, real tears here today! What a beautifully written post about an ugly, painful reality. I think you did a spectacular job celebrating Julianna’s arrival to this earth. Julianna surely got robbed of years, but she certainly hit the lottery with a mom like you! Sending you much love today! (From a part of southern California, San Diego!)
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Huge hugs Michelle, this was close to perfect! (Almost, because perfection needs Disney too – so while it’s stilll hard, we can always try again next time. For now, I blow some kisses for when you need them later).
Alex – you are a Champion!! Perfect reponse 🙂 You are indeed Julianna’s best big brother, and God made you her brother because .. a princess like her deserved such a tough ninja as a brother, in you 🙂 (but maybe she might secretly wondered why you were not a royal prince, hahahaha 👑) that was the perfect response to say, and hey – free ice cream! Everybody must have been so pleased, most of all little Miss Julianna.
In response to that – kudos, o Lunch Place, whoever you may be – Julianna would have admired the superpower-ness of love in that gesture! She might even have momentarily invited you to the club! (Because by offering free birthday sundaes basically you make kids love you. So she would have loved having you in her club, reserved exclusively for members handpicked with Julianna’s approval :-)))
Take care of yourself Michelle, couldn’t help comparing (inadvertently) these pics in the post with older ones, & you appear to have lost a bit of weight .. – I’m just a curious reader (& not a doc) but I’m just reminding you to take good care of yourself, because you need to have your own needs met before you can meet that of others (spouse/kid/work/church) etc.
hearts & hugs!
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As a mom who lost her son to a congenital muscular dystrophy, I understand how difficult the year of new “firsts” is. Getting away does help. I still get away as often as possible, and it’s been over two years for me. So much of what you write resonates with me. Sending you strength and peace as you journey onward without your beautiful Julianna.
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Beautiful written blog as always. I just love the way you celebrate Julianna’s life.
Alex did a wonderful job in his response. He’s a special, loving sweet big brother!
I think your right-I myself never seen a lot of pink sunsets. At least not here in NY. But after I started following you, I have seen so many….. Beautiful and just mesmerizing!
Julianna has brought joy into my life and I thank you for that.
The last picture on this blog of you, the sunset and the pony is just so beautiful that it brought tears to my eyes.
Hugs and kisses Julianna 💜💞💗💗💕
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YES to it all … you really do have a book in your future about your way of dealing with this grief! All of you are special.
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Even to this outsider, it is apparent that the joy of Julianna greatly outshines the pain felt at her loss. Anything less would seem to be impossible as her love was truly a superpower. I am so glad that you are able to see her light in the world around you, just as I’m sure she wants. Happy Birthday in Heaven, Julianna! Your love continues to grow!
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Michele. You sure have the gift of making beauty and happiness out of life. You are an amazing mother, wife, friend, writer.
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Good job, Alex!
Simple and honest..
You still h ave a small teacher in the house.. no doubt his sister approved of that, and the entire trip.
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crying as I read this. Alex’s explanation is so true and good and pure. ❤
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Hugs to you all.
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Thank you for the frankness and eloquence with which you continue to share your personal life. It is very generous of you and you convey incredible insightfulness into the things in life that truly matter.
(on a side note, I sincerely hope that you will always feel free to stop sharing for the benefit of others, i.e., feel free to put your own needs first and stop writing about your life at any time, for any reason whatsoever).
Your son is amazing. His simple and loving words touched me deeply and even helped me form a new view of life, love and family. I hope that Alex is doing as well as possible at this time of the very recent loss of his beautiful sister.
Julianna will be remembered always, by many, including people like me who only know her through your blog. I hope that you feel strengthened by the fact that many people also keep you, your husband, Alex, and your families in their thoughts.
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commenting is hard for me today, J has apparently weaved herself into my soul and as weird as it sounds for someone who never met her, I feel it, hang in there, honor, and remember all she shared with you and all you shared with her. Life is fleeting, eternity is forever, you will be with her again before you know it, when that day comes it will be like a great anticipation with joy and laughter. Time will not cure but will temper allowing you to keep your focus on today and tomorrow, as they say, life is for the living and as we well know it doesn’t always last long……if it is indeed what you make of it, little princess J did a darn good job of doing just that and it was a great gift and insight she has given us all, I will honor her by doing my best at it as well. For her it’s what we must do. I think if I were in her place right now, I would want everyone to smile and grab every moment of this fleeting life and not waste one moment on sadness, anger, or despair. I’m guessing she lived that way, she died that way, and she is still that way. One day at a time as Princess J continues to watch over her wonderful family
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Alex is an awesome Brother !! thats for sure !!!! he will carry on J’s legacy and remind everyone how awesome she is !!!! 🙂
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Happy Birthday. Your strength is truly inspiring!
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I’m so sorry… and I truly hope that you three never have to face such strife. It must be bitter trying to do whats best with the ashes. I seen with my own eyes a necklace that contained part of a loved one’s ashes encases in glass. Everyone has different ways to cope. I never took much stock in visiting a grave site though. I don’t visit the grave sites of loved ones after perhaps a couple visits. To me, passing away is not something that any worldly physical thing has to do with. Instead of being confined to something physical…i believe that the spirit is free and everywhere. Not sure what you did or are going to do with the ashes, in time peace will fill your hearts and you will know what to do with the ashes.
I can imagine that everyone who writes comments on this blog can seem to not understand what you three are going through at times. It is hard to convey in a few words what is so intense. I’m sure you realize that everyone who posts comments at least means well.
What would Julianna want for you to do with Disneyland?? I would suggest that Julianna would not want Disneyland to be something that causes you strife. It was a part of her life that gave her joy. Disneyland is nothing. Disneyland ain’t crap…Its just a place and the movies are just Disneyland movies. What i am saying here is that i hope that Disneyland does NOT cause you strife…make you feel uncomfortable.
I just saw 3 different girls and 2 different boys die on youtube. Many parents recorded the last moments of passing on youtube, It is as graphic as it gets… with an extreme warning to all that the videos are tough to see. But they are there…and the people who lost loved ones are there.
I’m so sorry… if i could take you three’s pain away and have it so you wouldn’t- i would. I know it hurts…i know it hurts so bad, I saw at least two different videos of Jullianna singing alone to Frozen..let it go. “let it go…let it go…let it go” Julianna would sing. Julianna’s rather serious tone when she would sing the words indicated that J knew it was valuable to “let it go” J has friends,,,,many friends like
Miette Skiller (2005-2013) the video called “Miette leaving…” by her mom,Natalie Skiller shows a very graphic and sad video. My point? You and your family are not alone…..many know what you are going through. I love all three of you….and i just want you to know that you are not alone
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Hello,
I have been following your family since your “Heaven over Hospital” post. I have been filled with joy seeing things about Julianna, and was overcome with sadness when i had read that she died. I didn’t know her in real life, but i felt like i knew her through this blog. I know that it has been hard, but i saw this
http://www.solsticeglass.com/glass-cremation-memorials.html
and i feel like J would have loved them. They are very beautifully made, and you can keep a piece of her close to you at all times.
Love from the thumb of Michigan,
Alyssa
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I too am 6 months into those same anniversaries(?) having lost our medically fragile daughter on Feb. 14, 2016 (8 years old). My husband first shared your Heaven, Not Hospital article with me during our difficult days of nursing her at home and I’ve followed all your posts. Ironically I’ve lived in Santa Barbara the last 20 years and even owned a café on State Street until I transitioned to staying at home with my daughter, full-time.
We also took a trip on her 4 month anniversary and were in Heavenly, CA as an unexpected side-trip on the day your angel was set free. As we came home and I learned J had passed, I knew that Heavenly was a good sign…I hope our angel girls are watching many pink sunsets together as we look up to them each eve. Much love.
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Thank you michele….I had caught a terrible cold and spent two weeks worrying at myself and anything else that just had to be done and forgot to check for your blog….I was delighted to read you all took a trip and enjoyed it so much! I’m sure she liked that! You r still on my mind and in my prayers….love to you all!
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