Ten

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. 


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

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. 

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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

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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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?? 

5) It will be OK. 

 

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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.

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Christmas 2013, photo by Jennifer Rialtos. 

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.

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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.

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The Nativity, Edward Coley Burne-Jones, 1887. Public Domain. Burne-Jones was an English artist whose second child died in infancy. 

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.

 

 

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First 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.

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photo by Charles Gullung

 

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?

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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.

 

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The jeweler added a surprise message on the back.

 

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.

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At a very special wedding…

 

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and a talk.

 

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. 

Nine

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.

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almost one here

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.

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I wish I knew what she was thinking here. Photo by Aubrey LeGault

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.

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Scotland

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.

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Her last picture.

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.

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Holyrood Palace, Edinburgh

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.

We saw the moon, but it never got dark.

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.

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Edinburgh airport

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.)

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A kelpie – just a sculpture, though.

Here’s another:

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17 Heriot Row, Edinburgh

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:

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Floors Castle

with  their fancy ceilings;

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J would have loved this — and asked us to reproduce it, I’m sure.

In the cities,

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Edinburgh

the countryside,

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Highland cow in, appropriately, the Highlands.

and water.

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Loch Ness

There are a lot of gravesites in Scotland, more than I’ve seen in any other place.

 

They are a part of the stories too, which, as it turns out, are more than just stories.

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Clan gravesite marker at Culloden, the site of the final Jacobite rising against the British in 1746. 1600 died in less than an hour. 1500 were Jacobites. It was also the end of the Highland way of life.

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The Jacobites were trying to restore the Stuarts to the throne. Their leader was Charles Stuart: we followed you prince, to this ocean of flatness and bullets. 

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.

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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.

PS: Unicorns.

 

 

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Our decision to go to Scotland was informed by the mundane (schedule, budget), not the magical. The unicorn was just a happy coincidence. (If you believe in that sort of thing, which I don’t. Not since I started listening to a girl named Julianna…)

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Three Years

The winter after Julianna died was bitterly cold. It snowed and sleeted, iced and froze. Winters are usually mild in this part of the Northwest, but the winter of 2016 was an aberration: harsh and unrelenting, but also fitting  for my own season of deepest loss.

I worried about Julianna’s little dogwood tree, the one that received farewell messages of love during her tea party. We made it the centerpiece of our front yard and it stood unsheltered from the biting wind. Would it be OK? It had to survive, I told Steve. It just had to.

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It did, and when spring came, I wondered if it would bloom. Young dogwoods, I read, may not bloom for a few years, especially when stressed.  That April, the neighborhood pear trees unleashed their usual arsenal of stunning pink flowers, but our dogwood stayed bare. It’s OK, I thought. It’s just a baby tree; we mustn’t expect too much.

And then in June, a week before the day I had been dreading, Julianna’s baby dogwood tree gave us this:

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Julianna’s dogwood tree — blooming at just the right time.

 

It was a late bloomer, but for us, the timing was perfect.

Julianna’s tree is a toddler now, and like a growing child, its size sometimes catches me off guard. Could this much time really have passed?

Three years. She’s been gone for three years today.  It’s unbelievable except for the fact that I’ve lived it.

Time dulls, it doesn’t heal.  It’s a blunt instrument that creates distance, from things we want to forget and that which we want desperately to remember. I am further away from the searing pain of fresh loss, but it’s harder to remember the sound of her voice. It’s another way of losing her.

On that morning she left us, I just wanted the world to know that there was a girl named Julianna.

Three years later, it’s the same. Julianna. She struggled, she soared, she laughed and lived and loved. She put things in their proper place and dared us to do the same. She let us in and we could experience, for a little while, a fantastic and colorful world powered by her imagination and heart, the strongest, purest and loveliest of hearts.

She occupies the most tender and fierce part of my own heart. It let me love her with abandon even as I knew I would have let her go. And now, it mourns her– always, it will mourn her, even as it rejoices in the pink sky.

 

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Before the Morning

Christmas and Mother’s Day are brutal, but they don’t compare to the day she left or the day she came. 

On July 4th, I remember her last. We wheeled her out and watched her eyes light up, brighter than the skies above. 

Halloween makes me think of an elephant and a cowgirl.  Cinderella in a rock-star pink motorized carriage, driving it herself. 

 

Green was not one of her favorite colors, but she went all out on St. Patricks’ Day because it was an opportunity  to celebrate (and accessorize). 

 

Back to school is hard, because she loved it so. Thanksgiving too, because it is my family’s big holiday. January 10th was the first day of her most awful hospital admission, but it’s also the day she got her Make-A-Wish princess room. 

Spring makes me think of the annual tulip festival. She wore pink socks and tulip pants and was engulfed by beauty. I’m grateful for this moment, but don’t think I can ever go back to see the tulips.

Every holiday and every season bring out another facet of grief that’s as individual and specific as the person we mourn and the moment we miss. Sometimes it’s a sledgehammer, sometimes just sweet melancholy. Always, there is emptiness.

Easter is the exception; it’s the only day that is better now.

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When I faced the awful truth, that part of my motherhood would require carrying Julianna to her end, there was despair and pain too strong and too deep for anything to reach – except for love. Mine for her, hers for me, and at the center of it and surrounding us both, Love. 

More than anyone else I have ever known, Julianna lived for and through love. When we started following her lead, things changed in an instant. We lived with intent; there was no time to waste.  We were still scared, but love was our weapon against fear, so her last eighteen months were glorious.  She thrived even as her body failed, and we lived a miracle: joy in the face of deepest pain. 

I have come to realize that Julianna was never mine to keep. She belonged to the Father who created her and the Son who saved her and the Spirit who shone so radiantly and unmistakably through her. 

She belonged to another place too, the place where there is no end,  where everything is as it was meant to be. She’s there now, running free.

Easter is not so much Easter to me now. It’s Resurrection Sunday, a promise that there is an end to all that is so deeply amiss in this world.

When it’s done, I’ll see her again — and she’ll run to me.

“The dream is ended- this is the morning.” 
― C.S. Lewis, The Last Battle

 

J — Do you want me to stand in front of the house and in front of all the people so that you can see me first?

M — Yes. I’ll be so happy to see you.

J — Will you run to me?

M — Yes. And I think you will run to me, too

J — I’ll run fast! (shakes her head back and forth to show me how fast she will run)

M — Yes, I think you will run so fast.