Seven Junes ago,
we moved from the desert to the Pacific northwest. Julianna’s care was getting more and more complicated, so we moved to be closer to family. We left one hundred degree days for sixty degree ones, sand for evergreen, established jobs for uncertainty.
One of our first weekends in Washington.
I have moved twelve times since leaving home for college. Moves are always stressful, but when young children are in the mix, they are doubly, maybe triply so. And when one of them is medically fragile, the stress is exponential.
We bought a house with wide halls, because we knew there would be a wheelchair in our future. We installed a power generator, because she depended on a machine to breathe at night. Her medical team was already in place, because I did the research months before.
So many moving parts, because we had to keep Julianna healthy. I didn’t let myself think about the alternative, but it fueled everything I did with a sense of urgency bordering on desperation. I organized and executed because her life — my heart — depended on it.
Six Junes ago,
we were in hell. The thing I didn’t let myself think about was happening: Julianna was dying. I couldn’t face it, but I knew it, deep in my bones and gut and soul. It would have been easier to die myself, but she needed me.
All of our hospital pictures were taken towards the end of her stays, when she was on the mend. You can see in her eyes, though, the toll it took.
Five Junes ago
was a lovely reprieve. Julianna was dying, but once acknowledged, we lived, with purpose and beauty.
Photo – Capturing Grace Photography
And the next June,
four years ago today, I held her in my arms and told her she could go. Run, jump and play, little one. Go to the place where things are what they were always meant to be. You are free.
****
If having a child changes everything, losing one changes more.
Something fundamental shifts, and it cannot go back to the way it was before. Grief makes you an alien in your once familiar world. You see, hear and feel everything differently. How could it be that the sun still rises and sets, that gravity still grounds? The seasons continue their relentless march, always onward, indifferent to my split reality.
We’re not supposed to live with one foot in the grave, but is it more acceptable to have a part of your heart there? Love isn’t safe, and she, with her soft pink cheeks and startling, sweet eyes, took a part of me with her. There’s no shame in it, just as there is no rising above or moving on from the death of your child. It just is.
Her first Christmas. Patch from her flight suit, one of her first Halloween costumes.
****
It’s June again,
and time for another move. We’re leaving our comfortable home with its wide halls and pale pink princess room and going back to the desert. It’s a temporary move and much less complicated than the one seven years ago, but it’s been agonizing. It’s hard to leave her last home, the place where she was so happy.
We bought our home because it fit our Julianna needs. I thought that the view was just a bonus — but she needed it, absolutely.
We’re moving so that I can do an HPM (Hospice Palliative Medicine) fellowship. I thought I finished my medical training twelve years ago when I graduated from neurology residency. I didn’t know then that there would be a girl named Julianna, that she’d teach me how to live — and how to die. I couldn’t have imagined surviving the death of my child, and I wouldn’t have believed anyone who told me that hospice would make her last months the happiest of my life.
photo – Capturing Grace Photography
It happened, though. It all happened, and it has produced and demands change. The second half of my medical career will be spent with families whose lives are upended by serious illness. I know the suffering that comes from fear, and I want to help them face it, in their own time and in their own way. I think it’s what I’m supposed to do.
****
Four years ago,
my world ended. I mourn it every day, and I take it with me, everywhere and always, for the rest of my life.
photo – Charles Gullung
Julianna Yuri 
I am speechless. Finding lack of words to describe your grief. I can feel it. Not to the extent that you do. I will pray for you and your family. Julianna is watching us all from a much much better place.
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Ancient Eastern philosophy says so many times that we must accept what we can not change- easier said then done but it is idea of merit and something to strive for always. 4 years ago you were a beautiful person as you said goodbye. 4 years later you are still a beautiful person. Sending love to you and your family. Stay strong!
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Thinking of you & Julianna. I love that you are going into hospice work, because you will be perfect in that field. Those that will be surrounded by you will be so grateful and Julianna would be so proud of you. Taking this road may not be the easiest for you, but I know it will be the right one. Thank you for being the wonderful person that you are.
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You have done so much good in the world through sharing her wonderful life. You have made us all stronger and braver. I know she is somewhere cheering this amazing decision you have made.
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❤ ❤ ❤ it will be so very hard going into hospice work, but I believe the empathy you have makes you so well-suited for it – because it isn’t just textbook talk – you’ve been there, too.
take care of yourself though, especially in terms of mental health – I trust you will know and do what’s right and helpful for others and yourself, but here’s also a gentle prod and reminder that if “right and helpful” looks like professional mental health help at any point (I said if :p), that’s okay too.
Thank you for still updating, & keeping Julianna’s legacy alive. 🙂
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Love Is A Superpower
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Michelle, my experience with hospice was not easy but, the people I met helped me with kindness and compassion. You will make a wonderful asset to the existing hospice team. Your empathy and compassion for others is not only known but felt.
Thank you for sharing your memories of Julianna. Julianna will not be forgotten.
Take care of Steve, Alex and yourself.
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Your strength and gentleness are your gifts that you are combining with your medical expertise to be such a blessing to so many more. As a parent who’s spent too many years with oncology with our daughter, people like you have made the unbearable somehow easier. So many happy prayers for all three of you with this move and all of the changes that will bring.
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Thank you, and I’m so glad that you have people who help. Sometimes you cling to the one person who can give you a little hope, and that gets you through. I pray that your family will always have someone like this. 💕
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Michelle, I thought of you yesterday and today. We were grieving our 4 months since losing our 8 year old daughter, Gianna, also medically fragile with lung disease and genetic anomalies. My husband found your story through CNN and we were walking a parallel path at the same time; 9 months of nurses at home after a 75 day hospital stay. We also bought our new home to fit her needs…a wheel chair van took 6 months to customize. She was gone months later. We were in Heavenly, CA of all places. I was grieving our girl on the 14th of June in Heavenly; then I was grieving for you. We found each other through the magic of a couple clicks. I am thinking of you on all the 14ths. Our girls. Mine on Valentine’s Day, yours gone on a summer day. You have a kindred spirit in me and your words always express clarity and truth. I celebrate your new path. You will be amazing at Palliative Care, too. Sending love.
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I think of Gianna too. I’m sorry that we have this in common, but am grateful for the connection. 💕
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Julianna’s story will always be with me…..through your blog we all learned the many lessons she taught us…my fav is you dont have to go far to have an adventure… hospice needs you…Michelle, you are a lovely lady with a gift to help others…sending your family hugs…..
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My heart and prayers go out to you all as you make this transition. I am amazed by God’s goodness to bring you to a place where you can help and comfort others who are going through the hardest season of their lives. May the Lord bless you and continue to hold you close Him !
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❤ God Bless you, your hands, and your journey 🙏
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Far away here in the tropics, my (our) hearts to you and your beautiful family as you move to a new place.
Bernard
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Julianna Yuri would be so proud of you — and excited for your new journey! I’m grateful that our years in Florida overlapped and that we have remained friends. God has so much more in store for you, Michelle. May He continue to bless and safeguard your beautiful family.
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Julianna will never be forgotten. I think of her often, bringing joy to heaven. I know she is so proud of you for this change in your career. You will help so many families get through the most difficult time in their lives. May God bless you and your family.
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You write so beautifully. I feel the pain in your words. It’s such a stark contrast the beauty of Julianna and the hurt felt by losing her. It’s a hurt I literally feel in my stomach and heart but I come here for your words. Please continue this blog. You and Julianna inspire me.
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Thank you so much – it means a lot. TBH, I’ve wondered about what to do with this blog…so it helps to hear this.
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I become filled with grief every time I remember her. I still miss her and will never stop missing her, but we should always remember the great example she set about being brave and fearless whilst staying happy all the same. I imagine her watching over us telling us not to feel sorrow and remain joyful just as she did. Always when In Heaven, eternity awaits 💞😇💞
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