She was not quite six years old when she left me
Six years ago today, exactly
It happened some time this year
the switch, the exact moment
I started having more time
Without her than with
I could have done the calculation
even now, I could figure it out
to the minute, probably
But I didn’t and I don’t
When my loss was fresh, I counted
How many hours, days months
since her last haircut or Christmas or hospital stay?
I kept a record of something that happened
To someone who matters
a merge of past and present tense
All I could do then was hold on
I count still, but less
I hurt still, but differently
Less fire and turbulence
More longing for something that only gets further away
The sacred space (because she was there)
The sacred time (because we knew it was finite)
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.
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.
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.
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.
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
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.
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.
Five Junes ago
was a lovely reprieve. Julianna was dying, but once acknowledged, we lived, with purpose and beauty.
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.
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’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.
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.
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.
We’re All In This Together
As COVID-19 changes the world, my thoughts are a jumble.
Everything seems different now, but the themes are oddly familiar. Fear, isolation, uncertainty, lack of control, disruption of carefully laid plans – these are things I know well. Boredom and frustration too, along with a sense of incredulousness. How could this have happened?
We live in Washington state, one of the hardest hit here in the US, but in a county that has, so far, been largely spared. Our schools and most businesses are closed, and we’ve been urged to practice physical distancing, all in an effort to avoid the devastation that other countries have endured. My heart goes out to those communities and families. Though we are separated by oceans and tightened borders, we are connected by our vulnerability. It could have been us, and it still may be us.
Those of us blessed with health and security tend to think that it will always be this way. If we work hard enough, are nice enough and responsible enough, our lives will continue on a comfortable trajectory. This mindset, whether it comes from a sense of entitlement or just naïve optimism, becomes laughable in the face of reality. All of us, if we live long enough, will experience something that flattens us. It could be a novel virus or a novel gene mutation, a natural or manmade disaster, the death of someone you thought you couldn’t live without. Invincibility is a myth, frailty the human condition. This is the truth.
I learned this eight years ago, when I diagnosed and foresaw the thing that would flatten me, and it is why I know fear, isolation and uncertainty. But I know other things too, important lessons learned from a girl who, in her physical body, was the very definition of frailty. This girl had a breathless voice that barely registered above a whisper, but she taught a master class on the things that really matter.
She taught me so much, more than can be recorded on this blog or anywhere else. In this strange, unnavigated time, these are things I try to remember:
1)The best prayers are simple and honest:
J’s prayer, April 2015:Dear God, I love you. You are good. You are very good. Will you make me strong?
2. Prepare, but try not to fear:
“I have learned that control is mostly an illusion. We must try our best, of course, to protect the blessings we have been granted – but if our plans are obsessive and driven by fear, we can’t really live.”
3) You don’t have to leave home to have an adventure.
4) Humor can be found in even the darkest times, and it is a blessing. In the history of time, has anyone else quoted Vanilla Ice on her deathbed??
Functional, Broken, Hopeful
I’m feeling it more this year, the wistfulness and the yearning. It sits just beneath the surface of things, the glittery ornaments and buttery desserts and the nostalgia. My uncomplicated self wants to stay buoyant and breathe the easy air of good tidings and cheer. No brokenness please, just joy and wonder.
It’s the fourth Christmas without her, and I’m more functional. I can go down the toy aisle, participate in white elephant exchanges and wear an ugly sweater (mine has a unicorn, of course.) It’s supposed to get easier. That’s the normal progression of things, right?
Right. But can we really talk about “right” and “normal” when the amount of time you’ve had your Christmas tree (six years and change) already exceeds the amount of time you got with your daughter (five years and 293 days)? The disparity will keep growing, but she will not. We can add new ornaments, but can’t create any new memories, not as a family of four. It’s not right, it’s not normal, and I will never like it.
The difference this year is that I can see, more and more, that it’s not just me. In this season of warmth and celebration, I see fractured families, lost dreams, failing bodies, fear, despair, loneliness. Brokenness is multi-faceted and ubiquitous, a part of being human.
This nativity scene, different from any other I’ve seen, captures it best.
Mary is embracing her baby. Joseph is by their side and three angels bow their heads reverently. It depicts a birth, but it could just as easily be a death.
Life and death, joy and pain. It’s a fine line that, when things are set right, will become a chasm. This is the hope of Christmas.
Armor (and t-shirts)
I wasn’t a hermit, exactly, when Julianna was here, but I came close.
Work, grocery and toy acquisition took me out of the house almost every day, but the outside world felt distant, almost irrelevant. Everything real and important was contained within the walls of our home. We were cocooned in a soft, magical space where the wit matched the décor (sparkling). There were every-colored ponies, Julianna tigers and vaccines delivered with soft needles.
Cruelty existed only in the form of the disease that necessitated our cloister. It spun its web and counted down, but on every day except for her last, we were safe in our lovely cocoon. There was nowhere else I wanted to be.
When Julianna died, it – everything – was ripped open. The world hadn’t ended like I felt it ought, and I was in it again.
It was a shock. On the first airplane ride after she died, I heard a pair of passengers dismiss our flight attendant as “old” and “rough looking.” Apparently, it was funny.
“Really?” I thought. “Is this what it’s like out here?”
And I missed it even more, the world we had created, the one that followed the rules of a girl whose love flowed out of her heart, onto her shoulders and into the dozens of kisses she blew to me every day. How would I survive in this other world?
The answers didn’t come all at once. I put a bright pink streak in my hair — because she marked me. I had a necklace made, a snowflake with a little pink diamond center, and asked for a chain strong enough to last the rest of my life. Hair dye and bespoke jewelry were my armor against a harsh, bewildering world. Unconventional, perhaps, but I knew she would approve.
Finding a new life after monstrous loss has been a dance of stepping forward (to what?) and retreating, humbled and shattered. Compartmentalization can pass for courage, but it’s like treading water: it buys time but takes you nowhere. And you can’t do it forever.
Peace and purpose in a post-Julianna world have been hard-won, first coming in flashes, then in fleeting bits turned into stretches of time. I do best when I carry her with me and look for her everywhere. Yes, it keeps me closer to the pain, but I can’t have it both ways.
She’s gone – my God, she’s really gone…but she was glorious, and she was mine. How lucky was I?
Life outside the cocoon is still bewildering. She’s here, though. I just have to keep following her lead.
One more thing….
T-shirts like these are another piece of my armor.
I hadn’t planned on doing another set of shirts, but people keep asking — even if they don’t know the story behind it, they respond to the message.
For the next week, you can get them at cost ($9 for adult or child’s short sleeve and $19 for adult long sleeve) — click here.
And if you are able, please donate to the CMT Research Foundation.
Today she would have been nine. But what does that even mean?
I can imagine six – she almost got there, after all. And seven isn’t so different from six. But eight, now nine, next year ten. A decade! My mind can go there, easily, but my heart doesn’t allow it. It won’t be crushed for a fantasy, not when life already contains such abundant substrate for brokenness.
An older Julianna is not an option, so I think of the past. Babies are magic, and she, with her perfectly round head and gummy smile, was no exception.
She was not an easy baby, though. My strongest memory of her first few months is crying — mostly her, but me too as I rocked and paced, rocked and paced. Why wouldn’t she stop crying? It was colic, and I couldn’t wait until it was over.
She outgrew it, but then the real problems started: worry over missed milestones, a diagnosis, determination to beat stupid CMT. Then, abject fear when we realized we would not.
Life was a serious of obstacles. Things would be OK if we could just get past them. When she starts walking; when we get the feeding tube in; when we get out of the hospital…it will be OK.
Security based on supposition is not actually very secure at all. What if it doesn’t work out and life is most certainly not OK? You go to Plan B (then C, D, E and F) and get more desperate. If the cause is noble and you fight hard, it will work out, right? It has to work out.
This, as it turns out, is another supposition. The most earnest and pure longing of my heart, the desire to simply see her grow up, was not guaranteed. At some point, I stopped looking into the future; I couldn’t face it anymore.
Enter Julianna. If you spent any time with her at all, you knew she was special. If you managed to put away your phone and internal checklist and worry, you entered a world created by an agile mind and tremendous heart. And it changed you.
Her eyes said it all. They contained ancient wisdom and saw things that a child shouldn’t face, but reflected only peace and deepest love — and mischief.
They told me that things would be OK in the end, the real end. If I had ever doubted it before, I couldn’t now because she made it too real.
But enough of all that, they said. Life is short for all of us, so you have to play and sing and laugh.
And move, as much as you can, because you can. For the joy of it.
It really will be OK in the end, but right now, live.
So on the day she would have been nine, I’ll look for something beautiful and do something fun. The past is not accessible, not in the way I really want, and the future seems too long without her. All I have is now.
She was happiest when I stayed there with her.
June 14th is a day of personal infamy. How else to describe the day your child dies?
We had been in hospice for eighteen months and were as well prepared as possible. It stunned, though, with overwhelming and vicious finality, like an almost-lethal blow to the solar plexus of my soul.
June 14th is just a day, like my children are just people. It’s as important as their birthdays but a lot more dangerous. It can’t be ignored or wished away: it requires reckoning.
For me, the only answer is escape. This year, it was Scotland, a country whose national animal is a unicorn.
We left the evening of June 13th, on a plane that chased the sun over a northern arc. It never got dark, so June 14th seemed indefinitely delayed – and then we were fully in it. Not unlike our time in hospice.
My first impression of Scotland was warmth. Not weather, (it was overcast and in the 50’s) but the people. From the woman who met us at the airport (She was in a pink tweed jacket and sparkly burgundy shoes; “It felt like a pink kind of day when I woke up this morning,” she said) to the kilted, septuagenarian hotel greeter who fist-bumped as way of greeting, it was everywhere. Scots are down-to-earth, friendly and inquisitive. They are as wonderful as their accents.
They are also great storytellers. We learned about kelpies (water spirits that look like horses but for their wet manes. Miss the tell, and they may drag you down to a watery grave.) and lost pipers and angel’s share (the bit of whiskey lost to evaporation as it matures. A scientific principle, infinitely more delightful as a story.)
Almost two hundred years ago, a little boy lived here, on 17 Heriot Row. He had weak lungs and missed a lot of school. He couldn’t play outside with the other kids, but may have heard them from his bedroom window as he convalesced. There, his beloved nurse cared for him and told him lots of stories. He began making his own – and never stopped. Later, he would write about pirates and adventure, good and evil.
This was the childhood home of Robert Lewis Stevenson, author of Treasure Island and the Strange Case of Dr. Jekyll and Mr. Hyde.
(That which limits the body has no hold on the imagination. I learned that from a little girl who used to pretend that her bed was a magic carpet.)
There’s great beauty in Scotland, both natural and made.
It’s in the castles:
with their fancy ceilings;
In the cities,
There are a lot of gravesites in Scotland, more than I’ve seen in any other place.
They are remembrances — because to forget is to lose a part of yourself.
On one of the last nights, we attended a ceilidh (pronounced Kaylee). In a beautiful old room with twinkling lights and a distinctly pink glow, we heard more stories and listened to the fiddle and pipe. We swung around and around in a Scottish line dance that brought a bit of dizziness and a lot of cheer. A ceilidh is a gathering, and it is a celebration.
At the very end, we sang a famous song from the famous Scottish poet Robert Burnes: Auld Lang Syne.
Should old acquaintance be forgot,
and never brought to mind?
Should old acquaintance be forgot,
and old lang syne?
For auld lang syne, my dear,
for auld lang syne,
we’ll take a cup of kindness yet,
for auld lang syne.
We sang about those we love from days of old, for they need celebration too. They stay in our heart — and become part of our story.