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.

_T7A7850

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?

File143

 

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.

 

img_6329

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.

img_6325

At a very special wedding…

 

img_6291

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.

 

537365_10101818162614349_1547782367_n

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. )

 

IMG_3625-2

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. 

***************************

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.

 

img_1324

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.

 

SONY DSC

10 January 2015: Awe and wonder.

 

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

 

img_2673

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.

img_3582

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

 

img_3581

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

 

IMG_2594

Last year’s ugly Christmas sweaters….

img_3579

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.

 

img_3583

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

 

 

fullsizerender-45

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:

 

fullsizerender-46

 

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.)

 

7a024349

 

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…)

7a024250

 

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.)

7a024263

 

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…

7a024340

 

…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.

 

img_1615-copy

 

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.

 

IMG_4779

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

 

IMG_3286

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

FullSizeRender-42

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


IMG_3303

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.

IMG_3311

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.

IMG_3329

Lots of pink roses

FullSizeRender-41

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.

IMG_3327

 

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.

IMG_4845

 

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.

 

7A010858

“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.

 

IMG_3261

Sunrise


IMG_3271

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.

IMG_4167

 

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

 

IMG_4236

 

IMG_4215

 

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.

IMG_4211

 

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.

FullSizeRender-40

 

 

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

 

IMG_3275

 

“Remember Me Always”

Remember me always.

Who says this? Certainly not a child.

Julianna said this – a lot. It started when she was four. I don’t remember when I first heard those words, but it was some time after our first heaven conversation.

She said it when she presented me with a flower from the yard (really, a weed). Those words accompanied just about every card and drawing and gift that she gave.

Put it in your room, and remember me always.

 

Moon-360

So much to remember in this picture: this was her favorite outfit (“my colorful shirt and my colorful skirt”). She loved shaking her head and making those plastic earrings clink. And if you look close, you can see her Korean doll, Young-Hee. She was never without at least one of her friends. Photo by Aubrie LeGault.

 

When she had a gift for you, it became the most important thing. She needed to share it right away, and had to experience your delight – immediately.

 Don’t forget your kisses! Remember Julianna always.

When her nurses left for the day, she sent them out with kisses. She blew kisses, and told them to put them in their purse. It was never just one kiss. It was three or four or twenty. They could take them out when they needed, but they had to zip up their purse so that they wouldn’t run out. And if they did? No problem: the kisses never run out.

Every time she asked you to “remember me always,” it startled. The plea to remember her would make my heart swell and but it would also cut. What made her say this? She was so light, carefree and vibrant. You could feel it as soon as you walked into her room and got swept into her fantastic world.

_T7A7850.jpg

Just another day in Julianna’s room. Not really, but you get the idea. Photo by Charles Gullung.

 

Julianna played harder than anyone I’ve ever known, but there was more. She was a deep thinker, an old soul. She talked about death, dying and heaven. And she told us what to do afterwards: remember me always.

And I do. In some ways, I feel like she is with me now more than ever before. I think about her all the time. I talk to her, and I feel her encouragement to give a little more, dress a little brighter and to just go for it (C’mon mom!). I see her in sunrises and sunsets, in pink flowers that grow wild. I see her in other children, and I know that she is finally able to run (or fly?) around and play – with children. Stupid CMT didn’t allow it here, but now she is free.

IMG_3215

These just grow — all on their own. God takes care of them.

I miss her – so much.

She told me to remember her always. I do, and I will. Always, until I can see her again.

 

This week, we received this beautiful  note from our friend. This is how he remembers Julianna:

She ruled her kingdom with love and kindness (and a very strong will that her human subjects were pleased to accommodate.)

She learned from history’s greatest princesses, overcame all of their flaws and created a realm that put Camelot and Wonderland to shame. There was no challenge, or evil in her kingdom of love that could not be overcome, and all creatures, great and small had equal opportunity to manifest Julianna’s own character, through them.

Princess Julianna’s imagination was endless. C.S. Lewis and Tolkien would have been exhausted keeping up with her plots. And, as any great princess, she ruled over many realms. Each time I visited, it was a different one, with a vibrant backdrop, and multitudes of characters. With each character so well defined, that if a mere human tried to change the character, they would get “The Look” from the writer.

Julianna’s life is an epic story, within a story. A princess trapped in a tower by an evil dragon, now released by our Prince on a white horse, and placed in a wondrous castle.

 

And then there’s this: Julianna in the hospital, after the worst was over. She had been through hell, and decided that it was time to dance. I remember, and I learn from this amazing girl.

 

And remember this: you have ONE WEEK to get this Julianna-inspired t-shirt. All proceeds go to CMTA. The store closes on Friday 8/12/16.

Order here:

http://getshirtsfast.com/superpower

One month

I haven’t been very organized about commemorating Alex and Julianna’s little milestones. I didn’t take pictures of them every month. I see these photos a lot, the ones with little signs that tell us how many months old a baby is on a certain day. And I love them — was that not around when my children were babies? Or were they, and I just didn’t notice?

Today, it’s been a month. One month since I was able to hold Julianna and kiss her forehead.

It seems perverse to remember and document the one month anniversary of Julianna’s death when I didn’t document the one month anniversary of her life. I have no idea what we did that day.

I thought about doing nothing, but that didn’t seem right either. How can I not remember and acknowledge it, this horrible loss?

It doesn’t really matter, of course. It’s just a day, and I’ve been acknowledging this horrible loss – for years. As difficult as this past month has been, the years before it were much worse. (Not the glorious eighteen months in hospice. Those were a gift, better than the most wonderful dream.And yes, “glorious” and “hospice” go in the same sentence — I’ll write more about that later.)

The time before that was the hardest. I knew, but I denied, and I struggled. Fear permeated everything then, and with it came despair.

I’m not afraid now, and I wonder if I can be again. There is sadness, of course. I miss her – so much. But there is also joy and gratitude. When I was afraid, I could not begin to imagine that these would be in the mix, and that they would keep me afloat.

Though Julianna was the girliest of girly girls, I imagine her in pants and sneakers now. She is always running, doing all the things that she couldn’t do in this life.

This weekend, Steve and I received a beautiful gift. I have been wanting to get a little angel for our yard (to put near Julianna’s tree when it gets planted). Kathy, the gifted artist who did Julianna’s princess room furniture, just “happened” to have the perfect one:

FullSizeRender-36

It looks like her, and it is clothed. (A lot of these cherubs tend to be partially draped. J valued modesty.) I thought it was perfect, but wished that it was a bit smaller, a sitting angel perhaps. Then Steve came up with the perfect response to my unspoken thought: “She would have wanted to be standing.”

 

FullSizeRender-34

This morning, a Julianna sunrise. For the last month, I’ve gotten up every morning before the sun, but it hasn’t been pink. It’s a pale pink, for sure, but according to J, the perfect shade of pink is “like a pig” — so I think that this counts.

Moon-607.jpg

I tried to find a picture of J at one month, but couldn’t. Instead, this is one of my favorite memories: the way Alex made her smile. 

 

PS — a  Cool New Thing:

These lovely items (a bookmark and a 3×3″ card) were made by the wonderful Oscar’s Print Shop. We printed a bunch, and will hand them out everywhere.

If you would like to do the same, please do. You can download each image individually to get a high-res pdf.JYLongJYLongbackJYSquarebackJYSquare

The Other Side

I’m on the other side now, in the club that no one wants to join.

I have grieved before, but this is different. What we have done these last three weeks – what we have had to do – goes against nature. But it happened, and we go on, not knowing what that really means.

I still can’t believe she’s gone. I know she is because the house is ridiculously quiet now. It wasn’t just the soft hum of her machines: it was her voice. “Mom! Mom!” As soon as I walked in the door, she called for me. Sometimes it was loud (thanks to the mic), and often it was very soft…but I always heard it. She knew that I needed to shower after work before I could touch her (no germs allowed), but she insisted on seeing me and sharing the latest thing. It could be a new toy, or an old toy doing a new thing. A new hairstyle or dance move. There was always some new drama (with her toys), a new observation, a new word. The supply was endless, just like her love.

And that’s the hardest part – knowing that there will never be a new anything. What I work on now is memory, legacy, meaning – some new direction that honors who she was. I will share this with you when it takes form. I want something big. Julianna didn’t do anything timidly or half heartedly, and I won’t either. Not anymore.

In some ways, I think that I’m doing too well. I went back to the office after one week. I could have taken more time, but I wanted to go back. It’s good to focus – hard – on something else. I’m more patient now, a better listener. It will make me a better physician (and person), I think, but the price was too great.

I know now what heartache is. It is a literal ache. I have felt it before, but it was fleeting. This unnatural event has made it settle. It’s a heaviness, and it’s oppressive. I have to concentrate to take a deep breath. It doesn’t leave, this physical ache, until my mind focuses on something else. And when the defenses are low, it’s not possible. So I go to sleep, but not for long. My body clock is reset, it seems, and it doesn’t want me to sleep much. This horrible loss has to be acknowledged and worked out, so it demands that I grieve.

They say that anger is part of grief, and it’s true. I’m not mad at God, and I’m not mad at any person. I am mad at CMT, mad at our situation. I am grateful for the eighteen beautiful months we had in hospice – it was longer and more delightful than anyone imagined. It was a gift. But I wish that we didn’t have to make that choice.

Choices bring me to the here and now, and they demand action versus languishing in the “what ifs?”

We love talking about Julianna, so we do it – a lot. Little Alex continuously wonders out loud what she is doing and shares new memories (Julianna had a lot of “secrets”, it seems, and they were adorable!). This weekend, I chose to make cauliflower fried rice, the last meal Julianna watched me make. I wondered if it was wise (should I really be chopping vegetables with eyes full of tears?), but her voice popped into my head: Come on, mom. You can’t cook many things. You have to make it!

 Some things hurt too much and I choose to ignore them – for now. Recordings of her voice, video clips…she was so alive. It’s too much right now.

Choices…intent….connections. And always, love. Those are the things that matter.

IMG_2095

If it’s a picture I don’t remember, I’m counting it as new. It was probably taken almost a year ago. I think she asked me to take this during a treatment because I told her that I missed her little nose.