A Talk

This week, I partook in two of my greatest loves: public speaking and flying redeye.

(To quote Julianna, (who was quoting Calvin and Hobbes), sarcasm will get you nowhere.)

About that…Julianna came across this phrase while reading with Steve. She asked what it meant, and he explained. For some reason, he thought that she’d have an opportunity to use this phrase on me.

S: So, when mommy says something sarcastic, say it. Wait for the right time – there’s no rush. Wait for the perfect moment – it will be funnier that way, OK?

J: OK.

seconds pass.

J: Mom, come here!!

I run over.

J: Mom, SARCASM WILL GET YOU NOWHERE!!

(I digress, but it’s a funny memory. And I think that sarcasm is pretty great.)

 

Anyway, after work on Wednesday, I took a redeye to the east coast so that I could talk about Julianna.

The event was the Tenth Annual Pediatric Bioethics Conference at Wolfson Children’s Hospital in Jacksonville.

This was the title of my talk.

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I came prepared.

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And this was my name tag.

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I was asked to share our story and talk about how we let Julianna participate in our medical decision making.

I had three main points.

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Listen

One of the reasons I never wanted to go into pediatric anything is because I thought that babies and young kids couldn’t tell you what’s wrong. Adults, I thought, were much easier to figure out.

I was an idiot.

(The other reason I never liked pediatrics is because I don’t think that kids should get sick. That worked out well, didn’t it?)

Kids communicate with us all the time — sometimes verbally, often nonverbally.

Julianna was incredibly articulate. She told us — with words — that she did not want to go back to the hospital. But all along, she was communicating with us in other ways. Her body spoke to us in with its decline. Her eyes sparkled when we went into her magical world (“Let’s play!”) and filled with tears when we asked too much of her body. They expressed everything we needed to know.

Hospice

It’s not giving up.

It gave us more time, and better time.

No Judgment

Though most of the response to our story was positive, we were also criticized by some who felt that we didn’t make the right decisions, and by others who felt we gave Julianna too much input into those decisions.

We made our decisions out of love, and with the support of our medical team.

And unfortunately, we are not alone. For all the parents who have to make impossible decisions, please — no judgment.

 

And if there is:

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Remember:

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When Words Fail

Julianna was the most stoic person I’ve known. When she cried, you knew that something really hurt, and you wanted to fix it immediately.

The tears, you see, came from a little girl who had endured a lifetime full of tear-worthy events but shed very few. She simply did not have the time, not when there were stories to tell and fashion advice to dispense and people to love.

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“Let me tell you something…” I am so grateful that she was able to see her words in print.

 

One thing that upset her greatly was when she was not understood.

As her CMT got stronger, her physical voice got weaker. Her voice got softer, and it had to fight against the noise of the BiPAP – which kept getting louder because her chest muscles needed more and more help moving air.

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A little microphone made all the difference. Along with the pink koala and happy manicure.

 

 

Through all this, her need to be understood never changed. She wanted us to understand her stories, agree with her opinions, and appreciate the nuances of language. She cherished words and insisted on proper enunciation (in one of her stories, there was an Ella, an Ellie and an EEliza. Different people, different names – and they had to be pronounced correctly.)

We did our best to understand her words and intent. When we failed, tears would spring from her beautiful eyes and she would shake her head in frustration.  This is how important it was for her to be understood.

 

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Sometimes she dictated, and we were just the scribe.

 

I share Julianna’s love for words, and I communicate best through written word. I can’t paint, sing, dance or emote. But I can put my feelings into words, and I need to put them into words – just like Julianna.

And now, words fail me.

I don’t know how many more ways I can say I miss her, or that it hurts, and that nothing feels the same.

I’ve used all the words I know, and they’ve expressed just a tiny portion of what I feel — and only the smallest, most palatable bit.

These days, I have no words – so I knit.

 

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I have a lot of pink yarn

 

I learned via YouTube and I make a lot of mistakes – but life is far from perfect, and my knitting can match.

I knit with bright colors and soft yarn. I want her to approve of everything I make.

 

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She would like this. 

 

 

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This yarn is called “Unicorn Sprinkles.”

 

I knit to fill the quietness that is our “new normal.”

I knit so that I don’t have to think, and I knit to help me think.

I knit because life didn’t stop when my world did, and I resent that sometimes. Knitting slows it down.

I knit because I’m starting to forget things she said and how she was. I’m getting used to this life without feeding tubes and syringes – and I don’t like it. I don’t like the fact that I seem to be tolerating it so well.

If I knit until my hands are on fire, I feel something – and sometimes that’s better than nothing, even if it hurts.

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I have a lot to work out, apparently.

 

I knit because I miss her so much, but I seem to have used all my tears (they went away with my words, I think) and I can’t just go back to the person I was before she was here. Something has to be different — because she changed me fundamentally.

So in this new life, I knit.

(But I still need my words. I miss those too.)

Seven

She would have been seven today.

If only her nerves worked. (Not the metaphorical ones that are equated with bravery. Those, she had in abundance and they worked just fine.)

If only they were able to carry the signals from her remarkable brain down to her arms and to her legs. Where would she have gone? How hard would she have hugged?

If they had done their job, the muscles she needed to breathe would have been strong, and she would…not even notice.  Because breathing should be effortless. What would her laugh have sounded like?

If those stupid nerves worked, she would be here now. There would be cake, and it would be pink and she would be able to eat it with her own hands. She would swirl around in a flouncy dress and tear open presents (Or maybe not. She never let us rip up wrapping paper. She couldn’t hurt anything that she found beautiful, and to her, most things were beautiful.) She would run around, fueled by a little extra sugar and an abundance of love. It would be what every little girl should experience on the day she turns seven.

Instead, she is five. She will always be five, except for the times I think about her at two weeks (the most wonderful peach fuzz baldness), four months (COLIC!) or two years (sparkling eyes). She will always be my baby and my big little girl; never a teenager, never an adult.

 

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I have always loved bald babies.

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In between rounds of colic. She looks deceptively sweet here…

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Trying on her flower girl dress. Her gold walker is in the background. She is almost two here, and I was sure that she’d be able to walk down the aisle if we worked hard enough. We did — and then worked hard to turn a wagon into a cloud-like carriage fit for a princess-to-be.

Maybe it’s a waste of time to think about the “if onlys.” It’s like reasoning with a thunderstorm or asking gravity to take a little break.

Julianna body was her Achille’s heel.  We propped it up, outsourced what we could to machines and coaxed it along, but it was a losing proposition. The problem was in the DNA, and it could not be fixed by twenty-first century science: my heartbreak was guaranteed.

And so was my joy, as long as I let her in – just a little bit.

For a while, I tried to resist. Her disease was a beast. We threw everything we could at it, but it only grew stronger. At my lowest point, the little girl lying in the bed — the one who couldn’t even scratch her own nose without my help — terrified me. She would leave me one day, and I would be broken.

And yet, I couldn’t help myself. She was so easy to love.  You just had to take her hand and say “yes” — yes to her brightness and her beautiful way of seeing the world. She made me better, in so many different ways.

Love was her superpower and it overcame my fear.

It hurts — in a way I cannot yet describe – not getting to seven (or ten or forty five).  But love is stronger than the pain and bigger than the emptiness — every second of every day.

Even on the day that she would have been seven.

 

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Time, Wounds — and Healing?

The day after Julianna died, we got rid of all her medical equipment. We were indebted to the machines (they kept her alive, after all), but when they were no longer needed, I wanted them gone. Stupid machines; stupid disease. I hated it all.

So the machines went away, and our house went quiet. I no longer heard the whirring of Julianna’s feeding pump (it ran thirteen hours a day) or the constant whoosh of her BiPAP.

Of course, the sound I missed most was Julianna’s voice, her constant observations and ridiculous wit.

Let me tell you something…

Ooh, what’s that?

Let’s play!

And so much more…

Last summer, the silence of our house was overwhelming. It shouted at me, cruelly: JULIANNA IS GONE. SHE IS REALLY GONE.

One year later, it feels different. It’s still too quiet, but it no longer taunts me. We gave her the most beautiful life that we could. She was surrounded by love. She is free. There is peace in this kind of silence.

I don’t think that time heals all wounds, not when the wound goes straight through the heart. But the pain is not quite so exquisite. It’s less likely to maim. Is this what one year does?

And then, I see it. It’s pure gold, a forgotten photo:

 

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Sept 2013

My heart is filled with joy, and then it is crushed.

This is her pre-K class photo, her only class photo.

She was able to sit up – by herself. This was before the scoliosis destroyed her spine.

Her fingers aren’t that curled. Why didn’t we paint them that day?

Her jumper was from Costco. It seemed like a good back-to-school outfit. I often had a hard time getting out of Costco without getting her another frilly skirt or princess dress. Her eyes lit up and she always said “I love it!” I still can’t go into that section. I miss that.

Her pink tennis shoes. Finding shoes that fit over her orthotics was work. They had to be big but light, and not completely ugly. I usually bought ten pairs of shoes and was lucky if one worked. When I found these, I bought the next size up –but she never got to use them. A few months after this picture was taken, her CMT took over, and we started our year from hell. She lost the ability to stand, then sit.

Her hair is in her signature bob. Could it be any cuter?

And that face, that smile, those eyes. Her mischievous, knowing, beautiful eyes. What was she thinking? What would she have become? What would she be doing now?

There are wounds that cannot be healed on this side of heaven. This will not go away.

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This weekend, we attended a bereavement retreat. The theme was the “Wild West of Grief.” Each family made a craft project that depicted their grief journey.

This was ours:

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It was a bit too much, but I think that she would have loved it.

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This is your last chance to get the 2017 “Love is a Superpower” t-shirt. All proceeds will go to CMTA. Orders need to be in by 31 July 2017. Adult and children’s sizes are available.

Click here: 

 

Life is an Adventure – Part I

There is a certain freedom that comes after you’ve endured a monstrous loss. When you’ve gone through the worst, is there anything left to fear?

As it turns out, yes. Anniversaries, holidays, social gatherings, polite conversation, fading memories – all terrifying.

For months, June 14th loomed large and ominous. What are you supposed to do on the anniversary of your child’s death?

The answer to this terrible question is as individual as a fingerprint. For me, one thing was clear: We would have to go away. And considering the thing we were escaping from, it would have to be big.

 

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Has it really been one year? .

 

Enter Italy and Switzerland.

Switzerland, because my mom has wanted to go there. Italy, because I found only one guided travel package that would get us to Switzerland around the right time, and it started in Italy.

My spirits lifted as we made the reservations. It would be a grand adventure. Julianna would definitely approve!

 

 

A few months later, I regretted it. Travel requires stamina and an open spirit; grief is exhausting. I felt like spending June 14th in bed.

Fortunately, the deposit was nonrefundable.

 

Julianna’s First Heaven Day

 

The group tour was set to start on 16 June. To accomplish my goal of being AWAY on 14 June, we flew into Milan a few days early.

Breakfast at the hotel looked more like a tea party.

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This may have been Alex’s favorite experience in Milan…

 

We visited the Duomo, Milan’s massive gothic cathedral.

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(It reminded me a little of this picture — the Duomo is not subtle…)

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“Too much is never enough” — one of my favorite Juliannaisms.

 

We lit a candle in front of the picture of the Madonna and Child.

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And learned that it is the only cathedral in Europe that is made of pink marble — who would have thought?

 

 

We also saw a castle.

 

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Sforza Castle, built in the 15th century by the Duke of Milan.

 

 

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Alex did log rolls in a former moat.

 

Then I spent the rest of the day in bed nursing my jet lag and my grief. I listened to recordings of our sweet girl and I missed her, just as I have every second of every minute of every day that she’s been gone.

Like the love that causes it, grief never stops. You have to make room for it, even when you are halfway around the world on the trip of a lifetime.

 

Part II is coming soon…

 

 

One Year

My sweet Julianna,

It’s one year today – your heaven day. This is what I’m choosing to call it, because this is the most important part of June 14th. It’s bigger than my sorrow and shock and pain.

I know you are free now, and gloriously happy — even happier than you were here. Happier in a way that I can’t really imagine. Your body doesn’t hold you back anymore, and you can run, jump and play. I think you are playing with children now. (We adults did our best, but it’s just not the same…) This does my heart good.

I miss you – so much. I know that you didn’t want me to be sad, but I am still bound by this world’s limitations. Better me than you 🙂

You taught me that happiness and heartbreak can coexist, so today I will try for happiness.

 

I’ll wear pink, and I will play with Alex.
I’ll seek out beauty in everything and everyone.
I will be honest but kind.
My hair will be neat.

Most of all, I will be thankful. I got to be your mom. Nothing can take that away.

Until I see your sweet face again,
With a zillion billion kisses,
Mom

 

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Photo: Jennifer Rialtos

 

My thanks to CNN for publishing a piece I wrote about our hospice experience. Because we started following Julianna’s example, we had eighteen beautiful months. She gave us the courage to face our greatest fear.

 

 

Eleven Months

For the past eleven months, I’ve marked time by remembering the past. What were we doing last Christmas and Easter and June and spring…when we were still a family of four?

It’s taken on a more intense timbre of late, because we’re coming to the end, the final weeks of Julianna’s life.

One year ago, I wrote:

Parenting a child with a terminal illness means that your heart is fractured a thousand different ways. One day it will be broken, but until then, you fight to give your child the happiest, most comfortable, most beautiful life you can.

 

And fight, we did. Last spring, Julianna lost her voice, but she gained a microphone….which allowed her to talk even more. She got another wheelchair and it widened her world. She told me that love is a superpower.

And yet, it was the beginning of the end. Julianna’s feeding tube finally failed (it lasted eighteen months – some sort of record, I’m sure) and we were thrown on the horrible roller coaster that only parents of medically fragile children know. We squeaked through, but it took a toll on a little body that had barely any reserve.

Julianna had more strength than anyone I’ve known – but none of it was physical. I see it now: her body was done, and the end was near.

I wonder if it will be like this every spring, this journey back to the last days of my daughter’s life. Will I relive her death for decades to come? Will it gut me always? What is the long term prognosis for a broken heart?

Impossible questions, and there are no satisfactory answers on this side. And when I get to the other one, maybe they won’t be needed because the pain will be obliterated – in the blink of an eye.

Eleven months ago today, Julianna rested in my arms one final time. The pain was indescribable, but I am grateful that she ended her life as she began it: in my arms.

I was able to give her safe passage. Sometimes it’s the only thing a mother can give.

 

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In My Father’s Eyes is a ministry that comforts those who mourn. This painting is beyond beautiful.

Ten Months

I’m not doing well.

There’s a heaviness that is, at times, crushing. It oppresses and smothers and obfuscates. It’s always there.

The depths of my emotions startle me sometimes, but, really, it’s quite logical. My daughter died – am I supposed to be doing well?

Oh, I know how it will turn out. I know that she suffered on this earth (I saw it – a lot), and I know she is free. I know that I will see her again — for eternity, in fact.

But now I mourn. I don’t get to skip over that part.

To get to Easter, you have to go through Good Friday.

And it is so painful. My God, it is so painful.

(I think God gets it. He saw his own child suffer and die. He saw Mary’s tears, and he sees mine. He knows that it can be no other way right now.)

Reality, you see, is brutal. The most difficult things I express in this space still go through a filter. Something in me wants to spare you from how bad it really is. Even if I wished to share it all, I can’t:  words are simply inadequate.

But here’s another reality that is as undeniable as my pain and requires few words:

 

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After a long, cold, gray winter, the cherry blossoms erupted, splendid and unapologetically pink. How could they not remind me of Julianna?

And then, there’s this girl – my God, did she live!

Untitled from Michelle Moon on Vimeo.

 

One year ago, she danced — as hard as she could — to the Gummy Bear song.  (Note the multicolored nails, the sticker on the BiPAP hose, and her long, ponytailed hair.  I forgot it  got that long! It was one of her goals, and  I am so grateful that she achieved it.)

 

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.

Eight Months

I’m not sure how this grief thing is supposed to work but I can say this much: at month eight, it hurts more, not less.

It’s incredible, really, that she is gone. I had a daughter, and then I didn’t. How is this possible?

I was there when she left and I sit in the silence now. It is obvious that she is gone, but my mind doesn’t understand it and my heart doesn’t accept it. Surely this didn’t happen– right?

The thing that bewilders me most is the love. Where, exactly, does the love go when you have loved someone with your whole heart – with desperation and joy and fury – and that person is gone? This kind of love cannot be ignored and it cannot be contained. Where does it go? What do I do with it now? This is the part I can’t get past; this is the part that hurts.

I have no answers, just love for a girl with the loveliest of hearts and the most buoyant spirit. The love never runs out. She taught me that.

I would do it all over again, with full knowledge of the pain ahead. I would do it again and again and again, because the only thing worse than the pain now is the thought of not ever knowing her at all. I am forever blessed because I got to be her mom.

So at last, here is something I understand: love is greater than the pain. It’s already won, but in this imperfect place, it coexists with the pain.

One day, it will be different. Until then, I love and I hurt, I love and I hurt some more. It can’t be any other way.

 

Two more things I know: she gave love, and she knew she was loved — both in massive amounts.

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(photos 1, 5 and 6 – Aubrie LeGault; photo 2 – Charles Gullung)