Five Months

It’s the most wonderful time of the year.

I love everything about the holidays, the good and the bad. I revere the meaning and also enjoy all of the trappings. I know you don’t need glittery decorations and peppermint everything to celebrate gratitude and Jesus’s birthday, but I like it all – unapologetically.

When you have kids, the holidays become even more magical.

 

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Julianna’s first Christmas morning.  Alex is moving in for a kiss (I think). J isn’t having it

 

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Christmas in Tucson. Instead of snowflakes, bubbles. Still magical. I’m amazed that J is able to stand by herself here…

 

It will be different this year. There’s just no way around it.

I’m not sure how I feel about it. Grief, I have discovered, is unpredictable. It’s my new filter, and it changes everything.

There will be no photo card this year. Maybe we’re done with them for good. Somehow,  I don’t really care. I lost my daughter this year. A photo card is meaningless.

 

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This is one of my favorite pictures of J and A. We used it for our 2013 Christmas card. It was the calm before the storm that was 2014.  Photo by Jennifer Rialtos

 

The toy aisle is another matter. Oh, how Julianna loved her toys! We would have had a closet full of Christmas gifts by now, new superheroines and ponies and princesses, all waiting for their turn to be loved and be launch into fantastic adventures. Her eyes went wide and sparkled at the sight of a new toy, so I was the most liberal of toy purchasers — even as I bemoaned the excess. Now, the toy aisle is too much, and it has nothing to do with consumerism.

Christmas music is safe. Her favorite was Hark the Herald.  I remember her singing it, even when she didn’t have breath to spare. I hear Alex humming it now as he eats apples on our living room floor, and I’m comforted. He seems to be thriving now, and I think it’s because he has both of us. I’m grateful for this, but also broken, because it makes me realize just how much he had to sacrifice when Julianna was here. And now he saves us, just by existing.

I have no desire to put up the Christmas tree, but we’ll do it if Alex asks. It seems like a reasonable plan, even if this new world is anything but.

 

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364 days ago we put up the tree.

 

And we still have to get through Thanksgiving. Last year, Thanksgiving came to us, and it was epic. This year, we will travel as a family of three to St. Louis. Julianna spent three of her five Thanksgivings here, and they are some of my happiest memories. This one will be tough.

 

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This is the last time she went to Homie’s house. You can’t even tell that she had stupid CMT. I love the belly.

 

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J was able to ride the merry-g0-round with help. She always picked the elephant.

 

I don’t know how to do any of this. Grief leaves me bewildered as often as it leaves me sad.

Thr holiday season so far through the filter of grief: joy (that she was mine), peace (that nothing can hurt her now), and wonder (what, exactly, are we supposed to do now?).

 

I remember….

One year ago (more or less), we let a documentary crew into our home to film Julianna’s Christmas for South Korean television. Julianna took it in stride, but the strangeness of living in front of a camera was felt by all.

One evening, they filmed us as we played in Julianna’s room. The producer asked Julianna to explain what we were doing.

Fixing him with a stare, Julianna said “We’re going to have a quiet contest now.”

“Quiet contests” were a game that Steve and I employed when we wanted a few moments peace in the car. Julianna was never very good at them — until that night.

 

Featured image by Jennifer Rialtos.

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.

 

 

 

Exceptional

“Exceptional. EXCEPTional. Exceptional!”

This was Julianna earlier this year, muttering to herself like she often did any time she was not directly engaged in conversation or play. It was an endearing but mostly incomprehensible habit.

Julianna’s hospice volunteer shared this memory with me. She observed her one morning saying the word “exceptional” over and over. J had found a new word, and she was exploring it. She probably liked the way it sounded, and I’m certain that she liked what it meant. (Another endearing habit: she frequently claimed that she didn’t know what a word meant – right after she had used it perfectly in a sentence. The girl had context.)

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Julianna and her hospice volunteer. We call her our angel.

 

I love this image of her. She adored words; she was exceptional. Of course she should delight in the word “exceptional.” It just fits.

Communication through spoken word was vitally important to Julianna. As stupid CMT took hold, volume and enunciation diminished and it was hard to understand her words. This frustrated her, often to the point of tears.

In her last year, something changed. Maybe we got better at listening, or maybe she made peace with her voice. Calmly, she would repeat herself and enunciate each syllable until we got it.

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Things got easier after she started using a microphone.

 

I like words too, and they’re not coming easily these days. I hope this passes, because Julianna’s story didn’t end with her death.

In the last post, I wrote that there are no new stories. This is stunningly and painfully true, but only in the literal sense.  I know that there is meaning and context yet to be discovered in the old stories, the ones show how a five-year-old girl taught us what it means to truly live.

Exceptional: that she was.

 

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