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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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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Scotland

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.

 

 

 

Purple Grape

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.

 

Edwin — or Edward??

 

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.

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Sometimes she had tea with boys who messed up her room.

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

 

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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?

 

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hairband + purple bandage = forehead scribble

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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.

 

 

 

“Too Much is Never Enough”

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.

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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.

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mixed media

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.

Hope — and the CMTRF

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.

 

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photo by Aubrie LeGault

Eight

On the day she would have been eight, I wonder if It was all a dream.

Did I really have two babies and lose one?

 

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The beginning:  Julianna, 2 wks. Photo by Stacy Newlin Nyikos.

 

Surely, it’s not possible, not when we wanted her so much. It didn’t really happen, right?

In my head, it’s simple. I was there for her beginning and for her end. She was here, then she was not – and I was there for all of it. It was my privilege, but also the source of my greatest pain.

 

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She was herself until the very end. On her last day, she received a unicorn and deemed it awkward…

 

My heart knows it too, but in a way that’s not easily expressed with words. Imagine the most oppressive blanket. It’s heavy enough to constrict your breath, but its weight falls just shy of crushing the life that’s left in you. It’s a continuous stream of blazing hot tears (sometimes a trickle, sometimes a torrent) or the searing pain of an open, angry wound.

Oppressive heaviness and exquisite pain: this is how my heart knows she is gone. It’s too much, and that is the source of my disbelief. When it’s this painful, a little disassociation is not a bad thing.

My heart knows something else too: if someone is a part of you, they never really leave. She’s in vivid pink sunsets and in the stories her brother tells, the ones that make us remember and laugh. She is behind every colorful item of clothing and sparkling accessory that I own. I think of her every time I see a baby, because nobody has ever loved them more. She’s in flowers, on mountaintops, and part of everything beautiful, bright and lovely — because she was everything beautiful, bright and lovely.

 

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So, on the day she would have been eight, I am blessed and bereft. I am thankful, but so sad.  I celebrate and I mourn, because her presence and absence are undeniable.

 

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Mt. Hood is the best part of the landscape here, and is visible on most days. Earlier this year, we put some of Julianna’s ashes on “Mountain Hood”