grief

Ten

/ Michelle Moon / 30 Comments

She would have been ten today.

Like any mother, I remember her in phases: the colicky baby, a vivacious toddler, my astonishing child.

Phase four and beyond exist outside of memory,  in a murky and perilous space where everything is possible but nothing is real. Visits there are fleeting, because whether you call it unimaginative or realistic, I have never liked spending time on things that have no chance of being. 

For Julianna the two weren’t mutually exclusive. She lived in the intersection between imagination and reality.  How else to explain a five year old who could take us for a ride on her bed turned magic carpet and also articulate the loss of higher cortical function that comes with death? (“When you die, you don’t do anything. You don’t think.”) 

I’ve dreamed of her just twice since she died.

In one, she was sick.  It was one of those dreams that goes on and on. I woke up with my heart in my throat, but I don’t remember any of the details. I don’t know where we were, why she was sick, or anything we did. I only remember the feeling, the horrible, hopeless feeling that was my reality for years.

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The other was a flash, but I remember everything. I was in a high rise in Seoul visiting relatives. She came through the door with windswept hair, a mischievous  smile– and hands full of shopping bags. She had two purses (Julianna was never afraid of excess), and they were worn cross-body style so that her hands were free to carry said shopping bags. She wore pants and pink sneakers, and I understood in an instant that she was very busy.  She had a lot of ground to cover, and a fussy dress would just be in the way. She didn’t say a word, but gave me one look with the sparkling eyes that I know so well, and she was gone. 

Photo by James Lucian on Pexels.com

Two dreams,

both as real as the earth below and sky above. I lived one and know the other, the way I know the curve of her forehead and the feel of her little hand in mine. Truth is in both of them, but the first is grounded in fact and the second could be perceived as fantasy, the subconscious yearning a a grieving mom.

After ten years of being Julianna’s mother, I know this: some truths, the deepest ones, can’t be felt with our hands or seen with our eyes. To live well in this world, with all of its pain and brokenness, you have to know the other one, the way she did.

Out of all the gifts she gave me (and there were so many), the greatest was a glimpse, an undeniable vision, of the reality to come.  I will see her again, in a place beyond time, imagination and frailty.

So on the day she would have been ten, I remember and mourn, anticipate and give thanks. More than anything else, I am blessed because there was a girl named Julianna.

Will I be your little girl even when I’m a queen? When I’m a giant?

Julianna Yuri Snow

Four Years

/ Michelle Moon / 20 Comments

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. 

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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. 

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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. 

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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.

 

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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. 

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Her first Christmas. Patch from her flight suit, one of her first Halloween costumes. 

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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. 

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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. 

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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. 

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photo – Charles Gullung

 

 

Mother’s Day

/ Michelle Moon / 9 Comments

Motherhood is joy, and it is pain.

Joy is easy, and it is polite. You can put it on a card and take it out to brunch.

Pain is hard, and it is ugly. You want to hide it away, but, like joy, it cannot be contained.

For the bereaved mother, there is no separation of the two. To ignore one is to deny the depth of the love you carry for the child you can no longer hold.

This Mother’s Day, I went deeper into the pain and wrote a piece for CMTRF. It wasn’t easy to write, so it may not be easy to read. It’s a part of my motherhood, though, and millions of others who know that love has a cost.

I would do it all over again, for the privilege of being her mother.

 

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Seven Months

/ Michelle Moon / 17 Comments

I’ve become a counter of days, a historian of sorts. The length (in order) of Julianna’s hospitalizations: 3, 11, 28, 14, 3, 21, and 3 days

It’s minutiae, but I keep it in my working memory because I can’t lose any more of her. Her feed rate: 76 cc/hr.

 Love is in the details, they say, and I want to remember all of them. Her BiPAP settings were 16/6.

I remember her birthday (25 Aug) and her heaven day (14 June) of course, but I also remember 10 January (the start of her most hellish hospitalization in 2014; the day she received her princess room in 2015) and 24 October (the day of her care conference in 2014 – we decided to start hospice then,  and the day our CNN story came out in 2015).

The harsh and unrelenting truth, though, is that memories fade, and they become unreliable. She had a little mole below the knuckle of her right index finger. We called it her tiny baby mole… or was it on the left? How do I not know this?

 It isn’t right, and it isn’t kind. The part of me that can’t believe she is really gone can’t accept the fact that, after just seven months, I’ve forgotten so much.

The logical side of me knows that this is normal — the details of Alex’s baby days are fuzzy too. The brain prioritizes and it filters. Numbers and details aren’t important unless you are missing someone – terribly.

And so I try. I remember, and with great effort, I try to give words to memories both trivial and profound.  Some days it seems impossible, but I can’t stop trying.  It’s my defense and offense against grief, my way of honoring our little girl. I remember you, Julianna — and I won’t let others forget. 

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Three years ago, I watched my daughter struggle for breath – for days, then weeks. She fought mightily, but with a body that possessed hardly any strength. My heart was pierced, and but it did not stop.She did not, so it could not.

 

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January 2014: not the first or last time in the hospital, but the longest and the worst. This is after she turned the corner.

 

Two years ago, I saw delight and wonder in my daughter’s eyes as she took in her elegant new room. My heart swelled, and it soared.

 

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10 January 2015: Awe and wonder.

 

One year ago, my daughter read to her kindergarten class. My heart was proud, and it rejoiced.

 

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14 January 2016

 

And today, I miss her, just as I have every moment of these last seven months. My heart remembers what my brain does not, always and forever. Every little single thing.

 

 

 

 

From Ashes

/ Michelle Moon / 27 Comments

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.

 

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Pacific sunset. Have sunsets always been this pink and I just didn’t notice? 

 

 

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Love is a superpower. It makes bad guys good. — JYS

 

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Julianna’s favorite animal (if she ever were to admit to picking favorites) made with Steve’s favorite toy.


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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.

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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.

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Lots of pink roses

 

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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.

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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.

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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.

 

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“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.

 

 

 

 

 

 

“Remember Me Always”

/ Michelle Moon / 18 Comments

Remember me always.

Who says this? Certainly not a child.

Julianna said this – a lot. It started when she was four. I don’t remember when I first heard those words, but it was some time after our first heaven conversation.

She said it when she presented me with a flower from the yard (really, a weed). Those words accompanied just about every card and drawing and gift that she gave.

Put it in your room, and remember me always.

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So much to remember in this picture: this was her favorite outfit (“my colorful shirt and my colorful skirt”). She loved shaking her head and making those plastic earrings clink. And if you look close, you can see her Korean doll, Young-Hee. She was never without at least one of her friends. Photo by Aubrie LeGault.

When she had a gift for you, it became the most important thing. She needed to share it right away, and had to experience your delight – immediately.

 Don’t forget your kisses! Remember Julianna always.

When her nurses left for the day, she sent them out with kisses. She blew kisses, and told them to put them in their purse. It was never just one kiss. It was three or four or twenty. They could take them out when they needed, but they had to zip up their purse so that they wouldn’t run out. And if they did? No problem: the kisses never run out.

Every time she asked you to “remember me always,” it startled. The plea to remember her would make my heart swell and but it would also cut. What made her say this? She was so light, carefree and vibrant. You could feel it as soon as you walked into her room and got swept into her fantastic world.

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Just another day in Julianna’s room. Not really, but you get the idea. Photo by Charles Gullung.

Julianna played harder than anyone I’ve ever known, but there was more. She was a deep thinker, an old soul. She talked about death, dying and heaven. And she told us what to do afterwards: remember me always.

And I do. In some ways, I feel like she is with me now more than ever before. I think about her all the time. I talk to her, and I feel her encouragement to give a little more, dress a little brighter and to just go for it (C’mon mom!). I see her in sunrises and sunsets, in pink flowers that grow wild. I see her in other children, and I know that she is finally able to run (or fly?) around and play – with children. Stupid CMT didn’t allow it here, but now she is free.

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These just grow — all on their own. God takes care of them.

I miss her – so much.

She told me to remember her always. I do, and I will. Always, until I can see her again.

This week, we received this beautiful  note from our friend. This is how he remembers Julianna:

She ruled her kingdom with love and kindness (and a very strong will that her human subjects were pleased to accommodate.)

She learned from history’s greatest princesses, overcame all of their flaws and created a realm that put Camelot and Wonderland to shame. There was no challenge, or evil in her kingdom of love that could not be overcome, and all creatures, great and small had equal opportunity to manifest Julianna’s own character, through them.

Princess Julianna’s imagination was endless. C.S. Lewis and Tolkien would have been exhausted keeping up with her plots. And, as any great princess, she ruled over many realms. Each time I visited, it was a different one, with a vibrant backdrop, and multitudes of characters. With each character so well defined, that if a mere human tried to change the character, they would get “The Look” from the writer.

Julianna’s life is an epic story, within a story. A princess trapped in a tower by an evil dragon, now released by our Prince on a white horse, and placed in a wondrous castle.

Overwhelmed

/ Michelle Moon / 20 Comments

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.

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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.

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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.

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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.

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