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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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 Months

About a week after Julianna died, I saw her in a dream. It wasn’t anything profound or tender….the girl was shopping.

In the dream, we were visiting relatives in South Korea. I was at my aunt’s house and Julianna dropped in. She was seven, maybe eight years old and was dressed in jeans and sneakers. She was clearly busy — she looked stylish, but was ready to move. Sunglasses were perched on top of her head and some cute cross bodies were slung over her left hip. She didn’t say a word, but I understood somehow that she wanted to show me her new bags – weren’t they great ?! She appeared for just a moment and was gone – presumably to do some more shopping.

 

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I’m pretty sure that my dream was inspired by this picture, taken on Thanksgiving day, 2011. She is fifteen months here. We didn’t know about CMT yet and hoped that she was just a late walker

 

I have dreamed almost every night since she left us – dreams with all kinds of weird plots and random people – but nothing more with Julianna . And I have wanted it so badly, to see Julianna again in a dream, in a sign., something, (And not a subtle little something, please – something big and undeniable. )

 

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23 Jan 2017. Biggest rainbow I’ve ever seen — but it’s not her. 

 

Let’s face it: dreams and signs aren’t enough. I want her. I want Julianna back. I want to kiss her forehead and bring her new toys and see her eyes light up with delight. I want to be astonished by her insight and double over with laughter when she says something outrageous. (Did you know that she once threatened to fire one of her nurses for working on chart notes while “Brave” was on? Watching the movie together was important. Paperwork, not so much. Once again, she was right on.)

It doesn’t seem like too much to ask for, does it? Such a reasonable request, a mother wanting her daughter, but I’m living in a world where nothing makes sense, a world that is less bright and not nearly as fun as the one I inhabited with her. There have been moments of joy (what would I do without Alex?), but always under a heavy blanket of sadness. They say it will be different one day, but right now, it’s hard to even care.

If she were here, she’d give me a good talking-to. She would fix me with those beautiful eyes and say “But Mom! You have to try. You have to be happy!” (And she is the only one who could say those words to me – truly).

I would say, “Yes, but I miss you so much. So, so much…”

She already gave me part of the answer, years before I would need it: I don’t have to worry because God is taking care of her. 

So maybe the big sign has already happened. I know she’s OK, and I know I will see her again. With all of my heart and soul and mind, I know this.

But I was right too.  I miss her. So, so much.

Nine months today, my sweet child.  I will try to be happy — for you and for Alex, I will try.

 

J: When you die, will I come to get you?

M: I don’t really know how it works, Julianna. But I think you will be the first person I see when I get to heaven. And I’ll be so happy.

J: Do you want me to stand in front of the house, and in front of all the people so 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! (then she shook her head back and forth to show me how fast she will run).

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

Seven Months

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

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

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

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

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

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

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

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

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

 

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

 

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

 

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10 January 2015: Awe and wonder.

 

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

 

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14 January 2016

 

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

 

 

 

 

Six Months

Note: My writing, like everything else about me these days, is a bit bewildered and lost. (And it’s maddening, because Julianna’s story is most certainly not over.) So I’m learning patience. This post is a remembrance and a reflection — but it’s also a little victory against our monstrous loss. 

 

The living room is decorated now, and I think Julianna would approve. There are old things, new things, old things doing new things – and she is everywhere.

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These were a gift from last year. I forgot we had them — Alex didn’t.

 

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An Alex arrangement  (I believe he’s part elf): the little mittens are Julianna’s, and the big ones are his.

 

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Last year’s ugly Christmas sweaters….

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Repurposed! Could Awkward Unicorn be in anything else but an ugly Christmas sweater twosie? J would have loved it…

 

The little tree in Julianna’s room is up too. It’s been ready for Christmas since last May.

Yes, May.

That month, her feeding tube failed, so we went into the hospital to get it replaced. The procedure went smoothly, but the recovery was rough. (see Roller Coaster, Part II. I am humbled again by her words, and look up — through tears — at heaven. She told me it should be this way.)

She wasn’t doing well, and we were quite busy trying keeping her alive. Amidst the chaos, someone suggested something that, on the surface, seemed absurd: why not put up some Christmas decorations?

We decided that it was a good idea.

 

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Julianna’s last Christmas tree, born in May and still up today. She loved the angel and asked to see her often.

 

 

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Before Awkward Unicorn, there was this one. Have I mentioned that I no longer believe in coincidence?

 

(Would you believe that, in all my years of medical training, not one second was devoted to holiday décor? Proof that the really important stuff is not learned in a classroom.)

The next day she turned the corner, and I felt a little silly. We had been through this several times before – a sudden illness, a few days of life and death, then a miraculous recovery. It was exhausting and terrifying – did we really need to make it more dramatic by imposing on her a last Christmas? She would see another Christmas, right?

The tree stayed up. Every day for the last month of her life, our sweet Julianna enjoyed a little bit of Christmas.

And that’s the way this season is for me: beauty and wonder, mixed with deepest pain and longing.

Six months today. The first six months of the rest of my life.

 

A remembrance:

Reading my account of Julianna’s last trip to the hospital brought back a lot that I’ve already forgotten.

As much as she hated the hospital, she tried to make the best of it. Her room for that final hospital stay had white walls and one blue accent wall. One colored wall! That’s all she needed.

When her nurse came in to introduce herself, Julianna told her that she loved the room with its one colorful wall — it was beautiful. She asked if she could be in the very same room two years from now (the next time her feeding tube would need to be replaced). It was as if she knew her nurse had personally chosen that room with Julianna’s aesthetics in mind. (And blue wasn’t even her favorite color! I can only imagine her response if the wall was pink…).

I don’t think that I’ve ever met another patient who was so concerned about her nurse’s feelings.

And a promise:

It’s been a very Pacific Northwest winter here — short days and lots of rain and clouds. Earlier this week after a particularly hard day, I stepped outside and saw this:

 

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A bit of pink, daring to peek out from all the gray.

Cookies, AwkUni Style

This week, we received a gift from a self-described “member of Julianna’s Awkward Unicorn Club”: cookies.

Julianna-inspired cookies, to be exact.

 

They were addressed to Alex, and he was also a cookie-muse. (He just got his blue belt in real life. I have stopped believing in coincidences.)

 

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This is Julianna, fighting stupid CMT. She is just as Alex imagined her a few months ago, and has achieved the highest belt in the world according to Julianna (pink, with a purple sparkly stripe. Her toenails are even painted…)

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Much to Alex’s delight, there was another breed of Awkward Unicorn. These poop rainbow colored poop (candy decorations).  He just had to remove their marshmallow “butt plugs” and give them a shake. (Simultaneously gross and cute. Julianna would have loved it too.)

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The one with Julianna in her hanbok is my favorite.

 

 

In her attached note, the master cookier (I don’t think it’s a word, but it should be) wrote:

I was admiring the angel cookies, had them all lined up and was wondering if she would be pleased…

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…and the room and outside in an instant turned bright blush pink. The sun was setting and it should have been getting darker, but for a minute, it became very bright, and very pink.

 

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In a world in which a mother is required to witness her child’s first and last breath, nothing makes sense. I didn’t expect this aspect of grief, grappling with the meaninglessness of it all.

At the same time, meaning can come from unexpected sources. Cookies, when they look exactly like ones that your daughter would send and are crafted by someone you’ve never met, make it just a little better.

I’m pretty sure she was pleased.

 

 

 

From Ashes

Part One: Messed Up

Parenthood is full of firsts: birthdays, words, steps, bus rides, etc. These moments are anticipated and special.

If your child dies, there is a whole new set of firsts, and they are not welcome. You anticipate them still, but with dread.

How, for example, does a parent celebrate (and make no mistake, it needs to be celebrated) their child’s birthday when they are gone?

For me, the answer started with anger.

A few weeks after Julianna died, the funeral home called to tell me that her ashes were ready. The woman on the phone was perfectly nice and professional. Following the usual rules of phone etiquette, I thanked her.

As soon as I hung up, I was mad.

My (lightly edited) first thought: What kind of a crap world do we live in where a parent has to get a phone call like this? This is so messed up.

My second thought/call to action: We’re going on a trip. I’m buying the tickets today.

And I did. And we did.

 

Part II: Wanderlust No More

From the time I was a young adult, travel was a huge part of my identity. It was one of the things I missed most after Julianna’s disease declared itself to be a joy-sucking beast.

At first, I was resentful. I felt like my wings were clipped and I envied others who could come and go with such ease. (Ease — even if your flight has been delayed or there is traffic. These are healthy people problems.)

Later, when things were into more proper focus, I didn’t care if I ever travelled again. Please, let my frequent flier miles expire. I didn’t want to “get away.” Everything that mattered was in our house. Often, it was contained in a single pink and purple room filled with toys and stories and love.

I knew that the freedom to travel again would come one day, but I wished that it wouldn’t. I didn’t want it. The cost would be unbearable.

Part III: California Playing

The call about the ashes was a catalyst. I had to do something to counteract the horribleness of it all, so I took the plunge and planned a trip.

We decided to spend Julianna’s birthday week in southern California. We needed sunsets (I’ve always been partial to the Pacific variety), friends – and amusement parks. Lots of them.

 

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

 

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

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


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Ferris wheel over Santa Monica.

 

We skipped Disney. This is, of course, the most iconic of amusement parks, but I wasn’t sure that I could face it without Julianna. Maybe one day, maybe not.

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We did see a castle, though: Hogwarts!!!!!!! One of the highlights of my life 🙂

Part IV: Julianna’s Birthday.

On Julianna’s birthday, we dressed to impress (Julianna, that is. We all wore pink) and drove to Santa Barbara. It’s one of the most beautiful cities I’ve seen, and the drive includes some stunning ocean-hugging stretches of the Pacific Coast Highway. We needed beauty on that day.

We went to the Santa Barbara Mission. More beauty — and peace.

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Lots of pink roses

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Inside the chapel. I don’t know if it was just the lighting, but the altar looked pink. In the middle, a lamb — another one of J’s favorite animals (“lamby”). 

 

And some levity.

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At lunch, our server noticed all the pink and asked if we were celebrating a special occasion. There was a moment of awkwardness as I debated myself: how do I answer this? Do I tell the truth? It’s like dropping a bomb sometimes…

Sweetly and simply, Alex answered. “It’s my sister’s birthday. She’s in heaven.”

The server nodded in understanding, and instead of distress, there was a free birthday sundae. (Ice cream was also needed on this day).

 

 

We ended the day watching the sun disappear over the Pacific.

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The ocean can make a poet out of anyone. It’s all been said before, and by better writers than me.

 

I’ll add only this: she was there, and she was free.

 

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“Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.” — Harry Potter and the Prisoner of Azkaban.

 

 

 

 

 

 

Two Months: Missing Her

Disclaimer:  You know those cooking shows where they stick something in the oven and almost simultaneously bring out the perfectly baked result? I hope that this doesn’t read like the blog equivalent of “the magic of television.” The last thing I want is to make grief look quick and easy. It’s the exact opposite.

Julianna has been gone for two months today, but I have been grieving for almost five years. It started when Julianna was one. I grieved for missed milestones, then lost milestones (infinitely harder)…and it just went on. Grief will be my constant companion, so I might as well get comfortable with it.

Part I

Sometimes, the rationalizations, responsibilities and remembrances aren’t enough.

I just miss her. In my marrow, in my heart, my mind, my soul, and in my gut. In the deepest part of me, I miss her.

They say life goes on, and so it does. The sun rises and sets each day (thank you for all the pink, God and Julianna…) and there are bills to pay. There are diseases to fight and legacies to shape. A family to love, friends with whom to reconnect, patients to help. It’s all important, and I am blessed – truly. I am grateful for all of this.

 

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Sunrise


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Sunset. Julianna’s windchimes. 

 

Sometimes, though, the horrible, glaring and massive void has to be acknowledged: I had a daughter, and she was pure joy. She’s gone now, and I will never see her again – not on this earth. It’s messed up and it’s wrong. I don’t like it.

There, I said it, and I feel better. I can spend the rest of the evening being semi-productive and appreciating life. I am, after all, Julianna’s mother. She would expect nothing less.

(But I reserve the right to come back to this place when I need. I miss her all the time. Sometimes, I have to take time – and just miss her. )

 

Part II

The remembrances do help.

A few days after Julianna died, my cousin sent me all the pictures she could find. I had asked for them, but I wasn’t ready to look at them until this week. (The remembrances hurt sometimes too, you see…).

When Julianna and Alex were almost two and four, they were asked to be in my cousin’s wedding. J was at the peak of her strength then, and had started using a walker. I hoped desperately that she’d be able to walk down the aisle with it.

It didn’t happen, but we made do. We decorated  a wagon, and she sat in a cloud of white tulle and lavender petals like the princess she was,  her beloved Alex leading the way.

She was proud and delighted. So was Alex.

For some reason, we don’t have pictures of this moment. No one I’ve asked has any either.

Among the pictures my cousin sent, though, was this — from the rehearsal dinner.

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After the wedding, we went on one of those duck-boat tours. It was a perfect July day in Seattle.

 

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I remember the joy and wonder in Julianna’s face as the bus became a boat and we came onto the sparkling water of Lake Stevens. It’s one of my happiest memories.

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Part III

Do you have angels? I have angels…

— Julianna

 

When we went through the worst, there was always a light.

One of Julianna’s nurses told me to look for this light. Even if it was tiny, we needed to cling to it, and it would grow.

Sometimes she was our light. When she took care of Julianna, we felt safe. (Think about what that means when your child is in the ICU and struggling…). She was the kind of nurse who, if something happened to go wrong on her watch, we would have been at peace knowing that Julianna was in the best, most loving hands. We trusted her that much.

Yesterday, I had the privilege of attending her wedding.

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Amidst the light and the love, Julianna was there. I was sure of it.

 

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