The Last Bedtime Story

"When is the right time to take pictures?"

That's the question I hear most often from families who are planning for the death of a loved one.  They want everything to be just right because the what ifs that come later can be debilitating.  

"When do we schedule photography?  How long will it last?  How much notice do you need?"
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These aren't easy questions.  The best I can do is to tell families how I operate (and that my job is to make things effortless for them) and to encourage them to listen to themselves.  They know when the right time is.
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The precise timing usually comes from the person who is at the end of life.  

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I met this woman six years ago.  She interviewed me as a potential wedding photographer.  I met her then groom-to-be.  The match was a wonderful one and we became friends in the process.  I photographed their wedding.  I photographed her first pregnancy and baby.  And second.  I sat with her and cried when her third pregnancy ended at 36 weeks.  I photographed her fourth pregnancy and baby one year later.

For as long as I've known her, she's inspired me.  "The best and easiest way to change the world is to be yourself.  Wholeheartedly.  Unapologetically."  When I met her she was a newly diagnosed leukemia patient.  She's had three remissions.  In April her oncologist informed her that her leukemia was back and she resolved to rally her strength again to manage the treatment protocol while continuing to participate in her family and community.

In August she slowed her pace.  We saw the side effects of treatment take over.  Her husband and her mother assumed her matriarchal responsibilities as best as they could.  Her mother declined community engagements on her behalf.  This once vibrant woman now struggled to breathe through the pain of everything.

Yet she smiled.

I visited her weekly.  I visited for her and for her family.  She didn't ask for anything.  She didn't talk about what life would be like when she left.  She carried on, as much as she could, as though she still owned her body.  In the moments I spent with her it was easy to forget she was sick and slipping away.

This week she called me, which was unusual.  

"Hey, can you come over tonight?"  I could hear the fatigue in her voice and yet she sounded chipper.  Joyous, even. "I'd like a few pictures."

It wasn't my regular day to visit and I had to rearrange a few things.  Because she didn't ask me for favors I knew this one was important and she felt strongly about it.  

We enjoyed a wonderful evening together.   She was easily exhausted and our activities centered around her bed, as they had for weeks.  She was gaunt, bald, fragile, and her skin had a waxy translucence.  She was entirely beautiful.  I could tell by the way her husband and mother looked at her that they saw the same beautiful woman.  I captured those expressions forever.  I photographed how she looked at her children.  Her laughter.  Her hand in her husband's hand.  All the little things that are the most important things.

It was time for the boys to go to sleep and I said my goodbyes when she grabbed my hand.  "Please stay," she whispered.  "One last bedtime story."

This is the part where I struggled.  She's always made it so easy to be around her.  She doesn't focus on her cancer or her treatment.  She doesn't ask for pity or sympathy.  She carries on in the same noble, gracious, compassionate way.  I love that about her because I understand why that was her choice.  That's what she needed.  When the word "last" left her lips, my own trembled.  I pursed my lips, blinked rapidly, and looked up at the ceiling.  I smiled that crying smile that's intended to signal I'm okay and having a hard time with this.  I felt the tears roll down my cheeks and drop on her mattress, the white sheet stretched taut. In the quiet of the room those tiny drops sounded like thunder.

She smiled.  The most gorgeous, meaningful, loving smile.  She had no tears to give and didn't need them.  I helped prop her in bed to receive her boys, who were making their way down the hall to her room in a parade of bedtime raucousness that only three boys can do.  

I don't know what her pain was like.  I know that everything hurt her.  She told me on a few occasions that it hurt to breathe.  The physical process of breathing was painful, even with palliative care.  She asked the boys to snuggle in her arms while she read.  This was clearly more than her body could comfortably do.  We could see it on her face and yet she smiled.  She was holding her boys.  She croaked her way through the book, Guess How Much I Love You, kissed the top of each head, and winced as grandmother and father picked up the boys and carted them off to bed.

"Thank you," she whispered.  She smiled as she closed her eyes.  I held her hand for a moment.  I told her how much I loved her and what she's meant to me.
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Her husband called me the next day.  She didn't wake up.  She was smiling.