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:

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.

*******

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:

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

*********

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: 

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 14^th 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.

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!

Such an adventurous soul

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.

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

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

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

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

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

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.

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

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…

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

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.

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.

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

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:

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.)

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.

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

Note: I wrote this last winter but didn’t post it because the subject matter (unboxing videos) is — just strange. But it’s too funny to keep to myself. For everyone who misses Julianna’s rapier wit, happy belated holidays (Featured image by Charles Gullung)

Julianna took her toys very, very seriously.

Julianna has a new obsession: Youtube “unboxing videos.”

If you don’t know what I’m talking about, good! Basically, someone with a soothing voice introduces a new toy, and there is a close up video of a hand (which I assume belongs to the voice but there is no confirmation. It is always well-manicured, which makes me wonder… can manicures be tax write-offs?) taking the toy out of the box and explaining all the features — in great detail. How many princesses will fit in Rapunzel’s carriage? Here’s Rapunzel….Cinderella…Queen Elsa…Three. But only two princesses if you want to close the carriage door. It goes on and on.

J: Mom, come here.

M: OK – what?

J: Can you try to find something like this for my birthday?

M: OK, but your birthday is a while away. I go back to my chair.

J: five seconds later. Mom, come here.

M: Yes?

J: Can I have this for Christmas?

The worst thing about unboxing videos is the soothing voice.

M: Julianna, don’t you think that this voice is weird?

Silence. When there is a new unboxing video on, I am irrelevant. 

M: It’s too soothing. I assume the soothing voice: Now, Queen Elsa is going to wear the yellow dress…looks fantastic. Here’s Princess Anna –

J: Mom, stop.

M: Why?

J: whispers. It’s annoying.

Later on, as I finish Julianna’s medical “chores.”

M: I’m going to talk like the that lady. I assume the soothing voice with its slow, lilting diction: Now I’m going to vent you. I take a 60cc syringe, then I clip your G-tube and attach the syringe. And look! 40cc’s of air…then I detach the big syringe and hook you back up to the Farrel bag….

J: Mom, zip your lips!

M: I pretend to zip my lips up…but continue to mumble in the same slow, soothing, singsongy manner. 

J: Mom, zip up your humming!

I burst out into laughter. 

J: Mom, you ripped your lips!

Even later as we’re reading her bedtime story:

M: Maybe I should do Calvin and Hobbes in the soothing voice.

J: No no no no. This is going too far. Too far.

M: Why?

J: Because Calvin and Hobbes is not the time for jokes.