FIVE YEARS

It starts in the springtime, a heaviness that whispers “It’s coming again.”

As things start to bloom and the days grow long, I think of her last months, when her body was fading and her time, always short, ran out. 

It’s different this year, maybe because I’m separated from her by both time and distance. We’re out of our home, hundreds of miles away from the pink petals of her Korean dogwood and the glittery walls of her princess room. A room that has witnessed your purest joy and deepest pain is more than just a room, just as June 14th, the day that marks the anniversary of something sacred and terrible, is not just a day.

Julianna’s dogwood, last summer.

I wonder if there’s been an hour, even one waking hour, during these last five years when I didn’t think of her. 

I doubt it, this year especially. Time and distance mean that some memories fade and there are less physical reminders of her time with me. The work I’m doing though, caring for people with failing bodies and shortened time, makes me think of her more. 

She’s there, in the hard conversations and the held silence when there are no words. She reminds me that patients are people with dreams and imagination and stories and that these things need tending. She makes me want to do more for their loved ones, because being a caregiver is harder than anyone can imagine. She helps me bear witness to suffering — because it gives meaning to my own. 


And so we’re here again, another June 14th.

I’m at another crossroads as my fellowship ends. A new job in a new city will take us away again from the home we made with her. The thought of leaving it (permanently this time?) feels overwhelming, so I avoid it. 

 I know, though, that a physical home does not contain her, no more than her physical body ever could. I’m grateful to her body for the five years it allowed her here, and grateful that she is free of it now. 

It happened five years ago today.

16 thoughts on “FIVE YEARS

  1. Thank you so much for sharing your heart for these years. Bless you In your life advancement. Moving forward is not always moving away. Blessings on your heart.

    Vici Upton

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  2. Thank you for sharing your memories. You are not going away from her. That is for sure.
    She is in my thoughts for ever and I love Julianna.

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  3. Dear Michelle,

    This is a ‘letter’ to you rather than a ‘comment’.

    This evening for some unknown reason I discovered and watched Julianna’s story on CNN via YouTube. Realising it was from 2015 I searched and found the saddening written CNN update from 2016, subsequently that lead me to your blog.

    It was indeed an overwhelming emotion when I discovered today is the fifth anniversary that you and your family had your hearts forever broken open as you were mercilessly compelled to farewell your darling sweet angel and princess.

    You are to be commended for your bravery by allowing the world a brief glimpse, then to have an opinion with regard to allowing Julianna to express her wishes. Again for then honouring the same. Irrespective of what others may opine as correct – unquestionably you and your husband made the right choice.

    The world met Julianna for only moments. You shared her journey, you know your daughter best and with total unconditional love you respected her so much as to agree to her wishes. Whom can know better than the individual experiencing the discomfort and exhaustion what will be the best plan. Attempting to pursue and prolong serves only one interest.

    You and your husband’s selfless actions were nothing short of heroic and the greatest demonstration of what authentic unconditional love truly is. To anyone that may dare challenge you – well perhaps they ought to think, listen and learn more while speaking less!

    I can not even begin to imagine the cruel irony you would have experienced as a neurologist, being presented the diagnosis you were given with Julianna’s pathology. Even as an RN (my background) one would be exasperated after the years of education and training in order to help, heal and care for others, yet with the person you would lay down your life for you the limitations you must have experience would have unbearable by not being able to cure and having full unedited comprehension of the pathophysiology.

    Being forced in an unfamiliar and indeed significantly undesirable new direction. Trading the therapeutic outcome of recovery for the very building blocks of care provision, love and compassion and to pack as much fun and adventurous imagination into the cruelly reduced and unknowable volume of time you were permitted.

    Your rerouted career journey (and another residency) in palliative care commenced right there and then. As heart-breaking as that ‘initial training’ was, I can only surmise it would have been packed to the brim with much marvelling, love and laughter punctuated with tears, frustration and heartache.

    You described how Julianna was so wise for one so young. I suspect this to be a trend with terminally ill younger children. Following my RN training I was engaged in paediatric oncology for several months (before sub specialising as a peri-op in cardiac surgery), I was frequently in awe of how these amazing youngsters possessed such an incredible wisdom beyond their years. Their candour and maturity astounded me frequently. On several occasions I observed children aged seven, and often less, giving to their parents the strength to cope with the most unimaginable horror of all – loosing one’s child with the hideous inability to rectify and prevent it.

    Each person’s journey in life is personal as are their values and beliefs. I believe children are truly a Devine gift, the are only ever loaned (never owned). It appears that the shorter the time they are with us then so much the more they have to teach us. Your darling angel in the true diplomacy of a princess reached all the way around the world, from top to bottom, and back during her magical and blessed time amongst us. You and your husband must justifiably be kvelling* at the incredulity of what she achieved during her all-too-short time with you.

    * Yiddish for filled with overwhelming loving pride – Red Sea pedestrian here.

    I wish you only the very best and indeed much happiness and fulfillment in your new career direction, it is an extremely inspiring role. Caring so holistically for those on their final journey and to be ‘invited’ along to share that journey as far as we are limited to go is both a privilege and an honour. Facilitating the elimination of fear and providing that degree of spiritual comfort not typically expected of a physician. Mostly just being present with that person, acknowledging who they are and affording them your time, open ear and caring hand to hold. Julianna has laid the foundation and shown you how, with much certainty I believe she will always continue to be your guiding strength.

    I have no doubt young Alex will continue to delight you. Is he gravitating toward an interest in aviation or medicine, or is he drawn to something completely different simply unique to himself? Siblings can have a truly tough time ‘re-calibrating’ their role as an only child or as the case may be. I hope he has been able to express himself well in his grief and pain.

    Your darling daughter has left an enormous unfillable hole through her physical absence but the infinite love that pours out will forever fill your hearts.

    Sincerely I hope Steve has been able to return to aviation. Additional to being an RN I have spent many years flying as an on-board manager for Qantas (our main airline down here in Australia), so as an absolute aviation aficionado I can appreciate whole heartedly the joy of returning to the skies. We aviation-folk don’t make good blood donors – we usually have Jet A1 running through our veins! 😉

    For you all I hope your respective paths are fulfilling and happiness filled. Living one’s best life truly honours those we have lost – it never minimises. May you always be bonded with the incredible and unique love generated by your dear sweet angel. She will always perpetually be cheering you on and sharing in your wonderful life experiences.

    With much love and the greatest admiration from ‘Downunder’ here in Australia, Anton 🙂

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  4. (For some reason my comment doesn’t get posted, I’ll give it another try)

    I have been waiting for this post. I only discovered Julianna’s world a couple of months ago and think about her and your whole family often.

    Thank you for your openness with the world, for showing the vulnerable and the loving side. You write with such emotion that it hurts, and I am grieving with you. But I want to keep reading this blog, because its utmost, unrefined frankness is something we don’t see very often, and your insights are valuable – they give me (and others, I’m sure) a new outlook at how I can face some challenges.

    …I just finished a Julianna portrait yesterday night and will post it today as my tribute to your sweet girl ✨

    PS: I don’t know if looking back and writing more about Julianna’s routine helps more or hurts more, but if possible, I would like to ask you to tell us some more about your wonderful daughter. Looking at Julianna’s photos and reading your posts, I often wonder what her typical day looked like. Whether it was physically possible to have a lot of play time and conversations, if she watched cartoons a lot. I wonder what her favorite cartoons were (I guess Frozen was one of them, and My little pony?).

    I am thinking whether she could drink water from a cup/straw – you mentioned J could only take food and liquids through the tube, but I got the impression that she could drink water without the tube. In this case, she could probably drink tea from a cup too?

    I hope these questions are OK. I admire the bond between you and J and want to remember her forever. As I’m new here, I’m still absorbing information and processing it, therefore these questions 🙏

    Many blessings to all your family, and may her light be with you always ❤️

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    • And also I’ve been wondering if Julianna spoke some Korean, maybe knew some words?.. Would really love to know more of such details and make Julianna’s image even more complete in my memory 😌

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  5. Hi Michelle! So great to hear from you 🙂 Hope you and your family are doing well and sending all of you strength today. I remember this time of year 5 years ago-, there will be lots of reflection and tea drinking in the next couple days, I remember wondering how you could be so perfect- everything you did and said on this site and social media was so enlightened, so truly amazing and so profoundly great. I remember the outrage at how some media places seemed so heartless and used the story to write a 3 or 4 paragraph tone deaf article that really had no clue as to how it was for any of you or your family, to include J. Some of the more heartless articles are still up 5 years later- and i can only ask WHERE are the articles today …the follow ups and the reflection. Heartless places only need to strike once i guess.

    So many of us are inspired and amazed at how you work helping others now- you are a shining example of what the best of the best of humanity can evolve to. J’s Grandmother, Alex, and Steve are all really great people too, I noticed that a few had mentioned this from time to time over the years on this site. Im sure that everyone hopes they are all doing well- too!

    Many years ago, when I was very young and studying Buddhist philosophy (in pursuit of studying the Zen sects that broke away from religion) the idea of final resting places came up. Studying the sects that challenged and broke away from religion, I remember learning that once passed, the rituals or location of the empty shell were not what mattered. I also remember the parallel and supporting argument that said to remember that it is not how one passes that you should keep with you in your heart, it is the wholesome times you spent together that matter most. In 7th or 8th grade- whenever i had to write a paper for school it was on Eastern Philosophy type stuff, and from there I developed a strong attitude about final resting places. What I’m trying to get at, Michelle, is that I truly hope you are okay with moving. What is important to you is kept alive in your mind no matter where you are. If we all got stuck at staying at final resting places then humanity would be stuck. The way of the universe is to move on from the physical. The extended way of the universe is that even an airtight body (not cremated) returns to dust in about 100 years. The final resting place becomes everything in the universe, everywhere. In fact, someone who is alive contains stardust. Sorry this paragraph is not that well formed- but the idea here is that the physical resting places are temporary anyway- everything returns to dust and the entire universe eventually becomes our final resting place.

    I hope you and your family feel supported today, Michelle. All of you have been through things that no one else can fix or fully understand. All of you are MORE than a news story, you are MORE than what anyone else thinks they know about you. You all did the right things in an impossible situation and that is an absolute truth. 100 percent.

    Today we honor J- today we are thankful that she is not in pain any more and is FREE and in a better place. Like you once wrote on this site about how cruel nature is- the truth of nature is that every single living thing is a tragedy waiting to happen. Time is the enemy. J is gone. Nature is a cycle of unbelievable cruelty. Today, we take a moment and transcend all of it when remembering J- TODAY we find wonder and joy and make J proud of us.

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  6. Thank you for your transparency. I think of you and your girl often as I walk down the hallway past my pretty glass angel on the wall. 💗

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  7. How could someone so small and precious have such an enormous and enduring influence on everyone who met her or heard her story? That is Julianna’s superpower. That and her capacity to love fiercely and unapologetically. I hope you feel the love of her admirers today. Hugs.

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  8. Thank you for continuing to share Julianna with us. I, like you, can not believe it has been 5 years. From reading your previous comment from Anton of Australia…wow….just wow. So well put. Your journey still amazes me every time I get a small glimpse of how you are all doing to date. I know you will, as a family, make the right decisions for your future. You are an amazing family. My family was struck by lightning. My brother, who was 12 at the time, can not walk, talk or see because of it. He is 56 now. For him to be trapped in his body with his mental facilities completely normal has been very hard to understand over the years. I look back at the journal blog you kept, and I read along with, of Julianna and it is not fair. God is in control. He has a plan. It was never said that life would be easy. But…..it is just so hard. Thank you for allowing us to continue to remember Julianna as you do. May God hold you all in the palm of His hand until you see her again.

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  9. Late at night, I should be sleeping, but instead I somehow stumbled upon the story of your daughter. I watched the CNN video of her and tears rolled down my face. My daughter is 4 years old. Every Sunday at church she tells me, “I don’t want to die, mommy.” I feel terrible that she fears death at such a young age. I try to assure her that God has a place for us in heaven. The fact that your daughter was so certain of her choice to choose heaven over the hospital speaks volumes. Faith, true faith, brings peace. She knew God was waiting for her and that her heavenly home would be a release from the pains of a broken world. God bless her. God bless Julianna.

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