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.
These were a gift from last year. I forgot we had them — Alex didn’t.
An Alex arrangement (I believe he’s part elf): the little mittens are Julianna’s, and the big ones are his.
Last year’s ugly Christmas sweaters….
Repurposed! Could Awkward Unicorn be in anything else but an ugly Christmas sweater twosie? J would have loved it…
The little tree in Julianna’s room is up too. It’s been ready for Christmas since last 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.
Julianna’s last Christmas tree, born in May and still up today. She loved the angel and asked to see her often.
Before Awkward Unicorn, there was this one. Have I mentioned that I no longer believe in coincidence?
(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.
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.