Ten

She would have been ten today.

Like any mother, I remember her in phases: the colicky baby, a vivacious toddler, my astonishing child.

Phase four and beyond exist outside of memory,  in a murky and perilous space where everything is possible but nothing is real. Visits there are fleeting, because whether you call it unimaginative or realistic, I have never liked spending time on things that have no chance of being. 

For Julianna the two weren’t mutually exclusive. She lived in the intersection between imagination and reality.  How else to explain a five year old who could take us for a ride on her bed turned magic carpet and also articulate the loss of higher cortical function that comes with death? (“When you die, you don’t do anything. You don’t think.”) 


I’ve dreamed of her just twice since she died.

In one, she was sick.  It was one of those dreams that goes on and on. I woke up with my heart in my throat, but I don’t remember any of the details. I don’t know where we were, why she was sick, or anything we did. I only remember the feeling, the horrible, hopeless feeling that was my reality for years.

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The other was a flash, but I remember everything. I was in a high rise in Seoul visiting relatives. She came through the door with windswept hair, a mischievous  smile– and hands full of shopping bags. She had two purses (Julianna was never afraid of excess), and they were worn cross-body style so that her hands were free to carry said shopping bags. She wore pants and pink sneakers, and I understood in an instant that she was very busy.  She had a lot of ground to cover, and a fussy dress would just be in the way. She didn’t say a word, but gave me one look with the sparkling eyes that I know so well, and she was gone. 


Two dreams,

both as real as the earth below and sky above. I lived one and know the other, the way I know the curve of her forehead and the feel of her little hand in mine. Truth is in both of them, but the first is grounded in fact and the second could be perceived as fantasy, the subconscious yearning a a grieving mom.

After ten years of being Julianna’s mother, I know this: some truths, the deepest ones, can’t be felt with our hands or seen with our eyes. To live well in this world, with all of its pain and brokenness, you have to know the other one, the way she did.

Out of all the gifts she gave me (and there were so many), the greatest was a glimpse, an undeniable vision, of the reality to come.  I will see her again, in a place beyond time, imagination and frailty.

So on the day she would have been ten, I remember and mourn, anticipate and give thanks. More than anything else, I am blessed because there was a girl named Julianna.

Will I be your little girl even when I’m a queen? When I’m a giant?

Julianna Yuri Snow

Nine

Today she would have been nine. But what does that even mean?

I can imagine six – she almost got there, after all. And seven isn’t so different from six. But eight, now nine, next year ten. A decade! My mind can go there, easily, but my heart doesn’t allow it. It won’t be crushed for a fantasy, not when life already contains such abundant substrate for brokenness.

An older Julianna is not an option, so I think of the past. Babies are magic, and she, with her perfectly round head and gummy smile, was no exception.

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almost one here

She was not an easy baby, though. My strongest memory of her first few months is crying — mostly her, but me too as I rocked and paced, rocked and paced. Why wouldn’t she stop crying? It was colic, and I couldn’t wait until it was over.

She outgrew it, but then the real problems started: worry over missed milestones, a diagnosis, determination to beat stupid CMT. Then, abject fear when we realized  we would not.

Life was a serious of obstacles. Things would be OK if we could just get past them. When she starts walking; when we get the feeding tube in; when we get out of the hospital…it will be OK. 

Security based on supposition is not actually very secure at all. What if it doesn’t work out and life is most certainly not OK? You go to Plan B (then C, D, E and F) and get more desperate. If the cause is noble and you fight hard, it will work out, right? It has to work out.

This, as it turns out, is another supposition. The most earnest and pure longing of my heart, the desire to simply see her grow up, was not guaranteed. At some point, I stopped looking into the future; I couldn’t face it anymore.

Enter Julianna. If you spent any time with her at all, you knew she was special. If you managed to put away your phone and internal checklist and worry, you entered a world created by an agile mind and tremendous heart. And it changed you.

Her eyes said it all. They contained ancient wisdom and saw things that a child shouldn’t face, but reflected only peace and deepest love — and mischief.

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I wish I knew what she was thinking here. Photo by Aubrey LeGault

They told me that things would be OK in the end, the real end. If I had ever doubted it before, I couldn’t now because she made it too real.

But enough of all that, they said. Life is short for all of us, so you have to play and sing and laugh.

And move, as much as you can, because you can. For the joy of it.

It really will be OK in the end, but right now, live.

So on the day she would have been nine, I’ll look for something beautiful and do something fun. The past is not accessible, not in the way I really want, and the future seems too long without her. All I have is now.

She was happiest when I stayed there with her.

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