I’m feeling it more this year, the wistfulness and the yearning. It sits just beneath the surface of things, the glittery ornaments and buttery desserts and the nostalgia. My uncomplicated self wants to stay buoyant and breathe the easy air of good tidings and cheer.  No brokenness please, just joy and wonder.

It’s the fourth Christmas without her, and I’m more functional. I can go down the toy aisle, participate in white elephant exchanges and wear an ugly sweater (mine has a unicorn, of course.)  It’s supposed to get easier. That’s the normal progression of things, right?

Right. But can we really talk about “right” and “normal” when the amount of time you’ve had your Christmas tree (six years and change) already exceeds the amount of time you got with your daughter (five years and 293 days)?  The disparity will keep growing, but she will not. We can add new ornaments, but can’t create any new memories, not as a family of four. It’s not right, it’s not normal, and I will never like it.

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The difference this year is that I can see, more and more, that it’s not just me. In this season of warmth and celebration, I see fractured families, lost dreams, failing bodies, fear, despair, loneliness. Brokenness is multi-faceted and ubiquitous, a part of being human.

This nativity scene, different from any other I’ve seen, captures it best.

Mary is embracing her baby. Joseph is by their side and three angels bow their heads reverently. It depicts a birth, but it could just as easily be a death.

Life and death, joy and pain. It’s a fine line that, when things are set right, will become a chasm. This is the hope of Christmas.

 

 

 

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.

 

 

 

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.

 

 

 

 

(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:

 

 

A bit of pink, daring to peek out from all the gray.