It’s the only way I can describe it. The ten days since Julianna passed have been intense, and it feels like a lifetime.
It’s true what they say about the waves of grief, but it’s from an erratic ocean, one without pattern or rhythm. Sometimes the waves are massive and incapacitating. At others, they are just a trickle – a poignant memory, then an ache.
We took J and A to the Oregon coast in spring 2014 – before her 2nd hospitalization that year. It’s the only time she got to see the ocean. She was still strong enough to be in a hiking backpack.
The ache is the hardest part. The intense pain is searing, but it goes away. It’s like throwing up – horrible, but there is relief afterwards. The ache stays and it gnaws and it drains. I can’t believe that she’s gone.
There has been comfort too. I want to share the things that comfort us, because I know that others are hurting with us.
Take comfort in this: It hurts so much because the love is so great.
It’s the price we pay for succumbing to love, and I’ll gladly pay it – a million times, over and over again. The only thing worse than the pain now is imagining a world in which Julianna had never even existed. Or wondering if I held back, left something on the table to protect my heart. I didn’t, I’m grateful, so I’ll take the pain.
Take comfort in: the words of a child.
A few days after Julianna died, Alex said this: “You know the morning after Julianna died and Daddy was on the phone? The people on the phone were crying, and it made me feel good.”
Alex, age seven, has realized that sharing in someone’s grief is a gift. Crying tends to make people uncomfortable – but why? If you have loved and lost, there will be crying and tears. It’s not a big deal.
It is an act of love to share in someone’s grief. For us, anyway, it helps to know that Julianna was loved, and that others are sad with us. It tells us that she mattered, and that she is not forgotten.
Take comfort in….the Therapy Unicorn.
I promise to do an entry dedicated to the Tea Party. For now, let me introduce you to this guy. He’s one of the first things that people saw as they walked in.
We recognized that there would be sadness at the Tea Party – and because it was Julianna’s Tea Party, a Therapy Unicorn made perfect sense.
This unicorn was a gift to Julianna from a dear family friend. He came from a truck stop. (I’m serious). Julianna met him during her last semi-good hours. He was introduced to her as a talking, face-touching unicorn.
True to form, Julianna called it:
J: That unicorn is awkward.
This is the last picture we took of Julianna. The unicorn was a perfect TumbleForms pillow.
A massive pink and purple unicorn who hails from a truck stop? Yes, a little awkward. He has, however, become a comforting presence. He has mass and weight. He reminds us of her and makes us laugh at the ridiculousness of it all.
Notes:
- My thoughts come more randomly and quickly these days, so I’ll probably be using Instagram more. You can follow us at
@julianna.yuri
#teaforjulianna, #loveisasuperpower, #juliannasnow
See the public Facebook event page: Tea for Julianna for posts from around the world.
Lots of new articles are out — see: “Other Stories” tab
Lastly:
If you have been touched by Julianna in some way, please help us fight the hideous disease that took her from us. This is one of our main motivations for keeping Julianna’s story alive.
Donate here to CMTA — for Julianna
(Do you see the purple cup on the unicorn psychiatry booth? We meant it as a prop, but the Therapy Unicorn collected $4.37 from satisfied patients during the Tea Party. I told Alex he could have the money. He said: “I want to give it all to CMTA for Julianna. It’s my money, and that’s what I want to do.”)
Buy her book, “Julianna’s Adventures” — 100% of proceeds go to CMTA.
Julianna Yuri 
It seems crazy because the last few weeks, I have been obsessing over your daughter- Julianna’s life. I am a mother of 2 beautiful children. I find it comforting to read your blog -to stop and “make moments” with them. Thank you for sharing your life and your Julianna with the world. Your daughter is truly an amazing gift and continues to teach us all. I only wish I had known her.
Please continue to share and update your blog. I love reading your inspirational words and of course, i love reading about Julianna.
God Bless and thank you again for sharing your beautiful daughter with the world.
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A short poem that came to me many moons ago…
“We own the night,
She and I,
For it is in my dreams that we laugh, and sing,
And dance and play once again.”
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Hi My name is Sheila Cato and I have been reading your blog since I saw the CNN special of Julianna. There’s has never been a story that has touched me so much then Julianna. She was a precious soul and so loving! I wish I could of met her as well. I am a mother of a 2 year old girl, which she resembles Julianna because of my Asian background. when I first saw Julianna I saw something special in her eyes. I have purchased Julianna book and cannot wait to read it to my daughter. I share your sadness and grief on her passing. I can’t imagine life without that angel, it is going to be a challenge. But I am sure you have a lot of friends and family love and support….. Thank you for sharing her story and I look forward to your blogs. You have taught me alot and made me aware of CMT. THANK YOU! ❤️ God bless you and your family.
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Know, please, that I and countless others like me have grieved (and shed tears) for you and your husband and son in the days since Julianna died.
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Our copy of the book arrived 4 days faster then predicted and it has been a great hit with my girls. Keeping you and your family in our prayers.
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One thing that amazes me is what awesome care you, Steve and your Care Team took of J, both physically and spiritually. Michelle, you and your family are in my thoughts and prayers. I pray for your heart to heal. Please know you are loved by many and always remember God is taking care of your sweet girl now.
A fun memory of J: when she told the PICU nurse “You are very handsome.”
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The truckstop unicorn couldn’t have dreamed of anything better than amusing and supporting Julianna, comforting Alex, and providing therapy.
I got my People on my Kindle and there was a small update on Julianna.
Those grief waves are tricky and not always predictable.
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I wanted to comment something, but being my Typical Self, I got distracted. I try not to be Dory sometimes? But when I do I’m really sorry! So here’s another attempt.
Wanted to say grief is really hard. I think when I experienced it re. the passing of my favourite highschool teacher – for me the hardest parts were daring to express my tears freely & openly, recognising that it was legitimate to miss the person who has passed on .. and yes, I too struggled with the fear of memories fading. It would hurt – and then I would tell myself this meant something, that the hurt stems from our shared experience between my teacher and I that I held dear. And I’d fear that one day, the degree of missing her might grow so distant, that it becomes an emotionless, faded memory. Half a year on (approx), I count highschool’s centennial anniversary a great way to remember my teacher (we all thought she would be in the committee for this, until she got ill & passed) – but yes, the fear that when this year is over and I have less chances to remember her .. the fear of a faded & distant memory is real.
In respect to my teacher, I was terrible at allowing myself to cry. I had to have a specific, very close friend from church, sit with me in a private space & encourage me that it was okay to cry. Only then did I dare to cry. Apart from this I would never let anyone else even see a drop of tears. Even still, I was embarrassed to have had another person see me cry. Oops. Don’t be me! Cry if you need to, both to parents & A. Go Ninja Boy! Real men understand that crying does not take away their masculinity 😉
Then I struggled with allowing myself to miss my teacher – which is really stupid, it essentially means that everytime I missed her yet again (for the initial days), I would feel guilty about it. Second oops. if you miss J, so be it. Acknowledge it for what it is … and don’t feel guilty about it. It’s an unpleasant feeling, but a straightforward one. Secondary emotions (like feeling guilty for missing someone – the context is that I assumed everyone else ‘got over it already’) are complicated and not helpful. Icky, gross.
Lastly, I really loved the twist re. the unicorn and the change that the psychiatric help cup collected! If I had to have a Therapy Animal, I would choose to have a Unicorn too. 🙂 I’m so amused that the ‘prop’ cup served a greater purpose than it was intended for, and indeed collected some money! & superbly proud of Alex for making a wise choice of how he would use that money. You go buddy! *\○/*
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You and your family are not alone.❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
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Thank you Alex for helping people understand that crying is ok and not just ok it helps.
Practical things – try to eat regular meals, sleep and wash your hands a lot. Your immune system is not functioning on all levels. As a doctor you know this already but even doctors need reminders.
Your family continues to be in the thoughts and prayers of thousands.
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@ the ‘practical things’ part – I second this!! Basic human survival requirements, which are so easily neglected/ignored/dismissed when life gets tough ..
In being caught up with myself re. a personal tough patch in life several years ago, … I decided at the time that food wasn’t a priority, burying myself in work was. Terrible decision on hindsight, because I mostly ended up brain fogged & fuzzy (& unable to concentrate on said work), perpetually hungry (& in denial – which meant gastric) .. etc icky stuff. Proper regular meals are extra, extra important .. just cos we’re adults doesn’t mean we’re any less human! 🙂
(Generally, don’t be me, heh. I’ve made some terrible mistakes of not allowing myself to be “human” enough in expressing my needs/to have them met, in times of grief/tough spots in life .. because I thought that was “strength”. Which ended up being a huge regret bcos all I was actually doing, was neglecting my own self-care. Mish & Steve, y’all need adequate self-care so you can care for Alex well, too!) xx
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You are in my constant thoughts and daily prayers. Love is a super power!
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Michelle, you and your entire family continue to be in my thoughts. Alex is very wise to understand that crying is good. Grief is so hard especially for someone taken way too soon as Julianna was. I sincerely hope you will continue to update your blog. I would miss your words. Be kind to yourself. Peace.
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Love is a superpower from México to around the world
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Michelle…there isn’t a day that goes by without me thinking of Julianna. I have her book on the coffee table in our family room and flip through the pages late at night…and say a prayer of peace for you and your family…and a prayer of thanks to J. for reopening my eyes to the magic that surrounds me. It is so hard for me not to cry when I read your updates. I loved the amazing spirit of your little girl…it makes my heart break to know she has passed from this earth and your lives. Again, I thank you from the bottom of my heart for sharing your story about your amazing J. I feel so blessed to have had a glimmer into her life and to have “known” her from afar. Peace be with you and your family.
Janice King
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Good morning Julianna,
You know I have thought a lot about you since I first read about you back in November, 2015.
Since you went to heaven on June 14th, I think about you even more and pray for you all the
time. I just wanted you to know that thousands of people around the world like you, love you
and pray for you too. You are a real Princess, a real mermaid and an absolutely amazing little
big girl.
Sending you lots of love and happy thoughts,
Valentino
Saturday, 25 June 2016
11:10am
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Michelle,
Thank you for sharing with the world your daughter Julianna, creating a strong awareness of CMT and
continuing to encourage others to help combat that horrible disease through CMTA.
Valentino
Saturday, 25 June 2016
11:18am
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Michelle, my heart goes out to you and your family! We think of Julianna daily. My family and I love reading your stories about Julianna and hearing about how your family is doing. Her light filled Spirit has inspired us since we first read your blog. Little Alex knowing it is ok to cry, and yes it is ok to cry as it helps us to heal. I understand about those waves of grief.
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Oh, Julianna. I can’t believe you’re gone, either.
Michelle, I grieve with you, and my little 3 year old and I talk about Julianna often. Yesterday she suddenly spoke of Julianna at lunch time. A simple, “i like Julianna.” ❤
Thank you for letting us in. Can't wait for the tea party post. I love the picture of her with the unicorn. Her eyes are filled with light and peace.
May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
Lily
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I’m so sorry for your loss. I wish I could take the pain so you and your family woud not have to.
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