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.

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:

 

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.

 

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

On July 4^th, 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 10^th 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.

 

 

 

Julianna named everything.

Her ponies were Strawberry, Candy and Beach Ball. Members of her little raccoon family (they benefitted from alliteration) were Ellie, Edward, Eliza (pronounced (EE-liza) and Edwin.

 

 

She loved some words just for the way they sounded. This is why she named her glow-in-the-dark ceiling stars “concubines.” (I think she learned that word from “Mulan,” and I’m pretty sure she didn’t know what it meant…because I know I would remember that conversation.)

The little girl who loved words and stories never wanted anyone (or anything) to feel left out, so even ostensibly utilitarian objects like staplers and bread boxes became characters in her extravagant and whimsical adventures. They made treks to see the Wizard, set traps to catch boys who kept messing up her room, and they helped her plan parties with “every color” balloons (but no gray, black or brown) and watermelon juice. If they were nice, they got invited to tea.

This marker was called “Purple Grape”, and it went on adventures too.

 

 

One of Julianna’s nurses told me about Purple Grape. One day, it  played a prominent role in one of Julianna’s stories. Months later, she insisted on finding it again, so they fished it out of a sea of Crayola markers. It was a happy reunion, and the adventure continued.

I found Purple Grape while cleaning out our craft cabinet, and felt the rush of joy/ hurt that is so familiar, but still powerfully and unexpectedly jarring. I found it!/She’s gone.

I tested Purple Grape, and felt the catch on paper that comes from a dried-out marker. Joy fled and there was only hurt. She’s not here, and it hurts so much.

And then, anger at the metaphor of a dried-up marker and the relationship with my only daughter. How stupidly cruel is this?

And I remember her hands. When she was diagnosed with CMT, it wasn’t in her hands yet. I remember the day I grabbed something out of her hand and it just slipped out. The doctor in me knew what it meant, and my heart sank.

I think of other hands, all the ones that helped. There were hundreds of them. They soothed and suctioned, bathed and brushed and they helped her play. They fashioned devices to keep pens in her hand, and when CMT took even that away, they held markers and paintbrushes in her hand so that she could create – because, don’t we all have to create?

 

 

Those hands took care of Julianna’s hands. They kept her nails bright and her skin soft. (One of her respiratory therapists from the hospital even came to work early so that she could paint her nails. Love is a superpower.)

I miss her hands, and I miss her magic.

I am grateful for the many hands that sustained her, the ones that did her chores and shared in her magic, and the ones folded in prayer from afar.

She lived — no, she soared  — because of of them.

 

 

 

On a wall in the corner of Julianna’s room, we kept a calendar.  That space is usually hidden because of an open door, so it was easy to miss. I had forgotten about it, in fact.

I found it a a few months ago, and I was gutted.

Julianna died on June 14, 2016.  The calendar was stuck on the most painful day of my life.

This kind of thing happens randomly: little barrettes, scraps of her scribble, a striped kitty sock. It’s like finding a sliver of glass, but instead of stepping on it, it goes straight to the heart.

We’ve found good homes for most of her things, but these little pieces  remain. They are painful treasures:  unbearable, but cannot be thrown away.

My therapist asked me to think about something to do with the calendar. I didn’t have to actually do it — just think about it.

I thought, then I cut — and painted and gathered and pasted and glue-gunned and bedazzled. It took a few weeks and a lot of Mod-Podge, and now it’s on the wall where the calendar lurked.

It reminds me a bit of “I Spy”, something at which Julianna excelled. Every sparkly bit is meaningful. Besides strips of the  gut-wrenching calendar, it has:

– her “amulet” (watchers of Sofia the First will understand),

– part of the tea cup she and Steve decorated for the tea party she never got to attend

– a tattered picture (my dog got to it, and I couldn’t bear to throw it away, so now the bitten ends are obscured by a flower someone sent and a hair tie.

– a bracelet she made

And more. Like she said, “too much is never enough.”

I’m not an artist, and the message from this is not “When life gives you lemons…”

It’s doing something with the little objects that hurt so much, because she is missed — so much. It’s knowing that she would have loved it and imagining how she would have played with it (I think it would have become an obstacle course for her little toys. The bracelet would probably be a jail for the bad guys..)

It’s a way to remember, on my terms, in a way that honors her.

I’ll be doing it for the rest of my life.

New t-shirts!

Here until 31 Oct 2019 only.

All proceeds go to CMTRF.

https://stores.inksoft.com/superpower/shop/product-detail/1002462

This week was the official launch of the CMT Research Foundation (CMTRF).  Its single focus is to deliver treatment for this disease, and I have agreed to serve on its Board of Directors.

The decision to join was easy, because the founders of the CMTRF, Susan Ruediger and Pat Livney, share my vision: find effective treatment now.  They are passionate but also pragmatic. They know that it will take a lot of money, plus collaboration between the worlds of research, biotechnology and pharmaceuticals. And I think that they have the resources and drive to get it done.

My motivation for joining is professional and, of course, deeply personal.

As a neurologist, I know that CMT is really not that rare, and it’s becoming less and less mysterious. Breakthroughs are coming through for other neurological conditions – so why can’t it happen for CMT?

Take multiple sclerosis (MS), for example. It affects about the same number of people as CMT (2.3 million patients worldwide vs. 2.6 million for CMT). It was also discovered around the same time– and by the same person. (Dr. Charcot, in the 1860’s).

When I finished neurology residency ten years ago, we had three disease modifying medications for MS. Today, there are ten. With CMT, it’s zero and zero.

The progress made with MS treatment is wonderful, and it is inspiring. We need the same for CMT, and in this era of genomic medicine, there has never been a more promising time —  but we need the research and we need the studies.

On the personal side, it’s about hope.

I hoped for many things as Julianna’s mom, but I couldn’t hope for a cure. We were too many steps behind on the science, and I knew that ours wasn’t going to be that kind of story.

Today, my hope is for other families affected by CMT, now and in the future: may your story be very different from mine.

We must accept finite disappointment, but never lose infinite hope.

–Martin Luther King, Jr.

 

She’ll be part of every good day. No matter what.  — “The Book of Polly”

 

I’m not sure what you’re supposed to do on the anniversary of your child’s death. It’s not just another day, and it’s impossible to ignore.

It’s like a great, looming cloud. It feels unsettled sometimes, and you wait for the storm. There should be a massive storm, you think — something that breaks things open and shakes the earth.  Something vital was ripped from the deepest part of me, and it needs to be acknowledged.

But there is no Zeus, and I am not God. I don’t control the weather, and I couldn’t cure her disease: acknowledge that, and everything changes.

Sometimes, the answer doesn’t come in words. We lack the language, I think, of a higher truth. So we listen, and we wait. We plan, but we do not control. It’s maddening sometimes, but it’s the best we can do.

Last year, I beat back the awfulness by writing something big (if you haven’t seen my CNN piece on hospice, please check it out. It’s so dear to my heart) and by taking a big trip.  

On Julianna’s second heaven day, I tried not to overplan. My goal was to see something beautiful and to honor her.

This was my something beautiful:

 

I honored her by making something sparkly,

and by going to her favorite place

 

 

Along the way, there were a few surprises.

 

 

 

 

 

 

 

 

A friend (J’s best friend, in fact) shared a memory — this is one of Julianna’s “secrets”

J — My legs can come off.

J’s BFF — Really? What do they do?

J — They’re wild!

And her eyes just sparkled…

 

And another shared a picture that I forgot existed.  Pure treasure.

 

There were tears —  believe me, many of them. But it was a good day.

…And someday, there is going to be a good day that we are all part of. I’m not sure where that is, or what it looks like, but I believe in that day. — “The Book of Polly”

The second year is harder than the first.

I heard it many times during that awful, surreal, first year, from many different members of the “club.” I didn’t believe it, though. How could I? How could it possibly get worse?

But it was. For me, year two without Julianna was most definitely worse.

The new normal has become…life. Our house is quiet. There’s no reason to walk through the girl’s section at Target. I make travel plans for a family of three.  I’m getting used to the fact that she’s gone – and I hate it. ( I recognize that it’s necessary  — “healthy”, perhaps — to accept reality, but I don’t have to like it. We live in a messed up world, and it hurts.)

I miss her most in the evenings. She needed someone at her bedside at all time. It wasn’t a burden: how I loved sitting there with the familiar lullabies playing in the background.  She was usually chatty and often profound: the best conversationalist I will ever know. She didn’t like to sleep (“God says Julianna is not tired.”), but no one can defy physiology, not indefinitely. So she’d drift off and I would watch…my lovely girl, finally at rest.

It was the best part of my day. I’d be exhausted but grateful. We had gotten another day and she’d be there again in the morning.

Two years ago, she drifted off for the final time. The mornings have come – 730 of them –without her.

On that first morning after she died, I wrote this:

Today, I just want the world to know that there was a girl named Julianna.

Such a strange, simple thought.  But it has stayed in my heart, even as words have failed me.

Julianna.

She made me better.

I miss her – so much.

She asked me about angels, and she walks among them now. No, she runs, and I think she even soars.

Her imagination was magical.  It was surpassed only by her heart.

She asked us to remember her always.

Remember her — please.

Hello again.

Thanks to those who reached out (and kept reaching out :), and I’m sorry for the silence.

I haven’t been able to write, and thought for a while about taking down the blog, because the idea of a fading or stale anything  associated with Julianna is not acceptable. But, then someone reached out and told me that Julianna’s story helped them during a low and desperate point. And then I heard it again from someone else…

I always thought that she needed to be shared, and her story is not over. I’m not sure how,  when, and via which medium…and on many days, I’m just overwhelmed by grief and deficient on hope.

But today — there is this.

Thank you for reading, and for remembering  Julianna.

Michelle

 

Grief fallacy #1: Time heals all wounds

It does nothing of the kind.

So far, all time has done is create distance from the happiest time of my life: eighteen months of love and life and celebration and intent, the kind of life you create when you’re not sure how long it will last.

 

 

Distance creates numbness, but numbness is not the absence of pain. It just masks the pain, and in some ways, that’s worse. A certain amount of numbness is needed to live in a world that my daughter has already left, but too much is dangerous. I know the numbness has been too deep when pain feels like a relief.

It takes my breath away, this pain, and it hurts in ways I cannot describe. I feel it in the weariness of my bones and in the heaviness of my spirit.

And there’s sharpness too, exquisite and intense emptiness when I realize (in yet another way), that she is really gone.

The other day,  a bag of pillows  did me in.

Julianna had about a dozen pillows on her bed at any given time. They were all grandma-made, mostly pink and came in a variety of shapes and sizes. The little flat rectangles cushioned her heels when she sat up in her Tumbleform chair. The long cylinders cradled her back and kept her in a less aspiration-prone side position as she slept. The medium rectangles propped up her arms when sat up in bed (only possible with the hospital bed and a plethora of more pillows, of course).

They were so important, these bespoke little pillows. They supported her small body and prevented bed sores and propped up weak limbs so that she could wave her forearms about and delight and direct. They had to be just right, and it was something that only the experienced Julianna caregiver would know.  How lucky was I to be one of them!  It was my privilege to know these things and to do these things. I miss these little acts, the thousands of tasks that were a manifestation of love for the girl with the loveliest of hearts.

 

Memories flooded and tears flowed freely at the sight of these pillows. I held them close and took in their scent, but I  smelled nothing but a faint staleness.

I’m not sure what I was expecting. The pillows have been hiding in a closet corner for almost two years, and Julianna never really smelled like anything to me. Maybe that’s what happens when someone is so deeply a part of you: I can’t smell her any more than I can smell myself.

 

I sat in my puddle of tears and imagined what she would say…Put them in the washing machine…let’s PLAY!!..I smiled as I ugly-cried.

 It always comes back to love. It’s greater than the pain; it’s what remains.