The Pillows

Hello again.

Thanks to those who reached out (and kept reaching out :), and I’m sorry for the silence.

I haven’t been able to write, and thought for a while about taking down the blog, because the idea of a fading or stale anything  associated with Julianna is not acceptable. But, then someone reached out and told me that Julianna’s story helped them during a low and desperate point. And then I heard it again from someone else…

I always thought that she needed to be shared, and her story is not over. I’m not sure how,  when, and via which medium…and on many days, I’m just overwhelmed by grief and deficient on hope.

But today — there is this.

Thank you for reading, and for remembering  Julianna.



Grief fallacy #1: Time heals all wounds

It does nothing of the kind.

So far, all time has done is create distance from the happiest time of my life: eighteen months of love and life and celebration and intent, the kind of life you create when you’re not sure how long it will last.



Magical. (notice all the pillows). photo by Charles Gullung


Distance creates numbness, but numbness is not the absence of pain. It just masks the pain, and in some ways, that’s worse. A certain amount of numbness is needed to live in a world that my daughter has already left, but too much is dangerous. I know the numbness has been too deep when pain feels like a relief.

It takes my breath away, this pain, and it hurts in ways I cannot describe. I feel it in the weariness of my bones and in the heaviness of my spirit.

And there’s sharpness too, exquisite and intense emptiness when I realize (in yet another way), that she is really gone.

The other day,  a bag of pillows  did me in.

Julianna had about a dozen pillows on her bed at any given time. They were all grandma-made, mostly pink and came in a variety of shapes and sizes. The little flat rectangles cushioned her heels when she sat up in her Tumbleform chair. The long cylinders cradled her back and kept her in a less aspiration-prone side position as she slept. The medium rectangles propped up her arms when sat up in bed (only possible with the hospital bed and a plethora of more pillows, of course).

They were so important, these bespoke little pillows. They supported her small body and prevented bed sores and propped up weak limbs so that she could wave her forearms about and delight and direct. They had to be just right, and it was something that only the experienced Julianna caregiver would know.  How lucky was I to be one of them!  It was my privilege to know these things and to do these things. I miss these little acts, the thousands of tasks that were a manifestation of love for the girl with the loveliest of hearts.


A five pillow arrangement. Her right side always needed support. (“stupid scoliosis!!” –JYS)


Memories flooded and tears flowed freely at the sight of these pillows. I held them close and took in their scent, but I  smelled nothing but a faint staleness.

I’m not sure what I was expecting. The pillows have been hiding in a closet corner for almost two years, and Julianna never really smelled like anything to me. Maybe that’s what happens when someone is so deeply a part of you: I can’t smell her any more than I can smell myself.



The pillows — and other things I can’t give away.

I sat in my puddle of tears and imagined what she would say…Put them in the washing machine…let’s PLAY!!..I smiled as I ugly-cried.

 It always comes back to love. It’s greater than the pain; it’s what remains.