I didn't want to write this post.  In fact, I've been doing everything possible to avoid it.   For the last two weeks, a simple release form sat in an unassuming manilla envelope in my office, with a young woman's name scribbled at the bottom. I almost wished she hadn't signed it after all.  At the time, I had found myself hoping that she'd just forget to send it back and then I might be off the hook.

 

But she did sign it and return it, and so, in my true procrastinating form, I decided I was going to leave it until after the holidays.  I didn't want to think about it anymore until then.  I wanted to sit around the Christmas tree with my babies and somehow pretend that everything was as it was before.  I've never liked change- especially the kind that I don't see coming.  Those always hurt the most.  And there had been too much hurt over the last few days.  I wanted my happy back.  Give me naive, even.  I wanted that rosy lens I had grown so accustomed to looking in for most of my life.

 

It seems so much easier to talk about the refiner's fire and those growing pains that "build your character" when it's in the past tense.  Even easier, when it's happening to someone else.  And harder still, when it's fresh and raw and you're still coming to terms with it.

 

The week leading up to Christmas was one of the darkest weeks I've experienced in some time.  In hindsight, it was probably a good thing that I didn't have much time to prepare for my first Gold Hope shoot.  I was contacted on Thursday, December 13th and was told that it needed to happen that weekend.  The liaison told me that this girl's family had just received the news that she was "end stage" and there was nothing more that could be done.  Preparations had been made to celebrate her Christmas early and do a few things that she had always wanted to do.  I had barely begun to wrap my mind around a family that was doing the impossible: somehow finding it in themselves to decorate, wrap presents, and make the most of their five year-old daughter's final days... and then the very next day, more news of more shattered parents in a small town in Connecticut, also doing the inconceivable.

 

I sat on my couch that Friday evening, only a few hours past the jolting headlines of sweet babies whose lights had been snuffed out in their very classrooms, and only hours away from meeting another one who was losing hers in her own home. For the first time in years, I was unable to avoid thinking about death.  I let it grip me, let it make me sick, let it scare me.  I stood in the doorways of Ella and Milo's rooms and watched them sleep, tried to memorize each hair, dimple, and drool stain and wondered if every parent across the nation was doing the same thing that night. We know that death is inevitable.  But when it barges into our classrooms with a semi-automatic weapon, or creeps up slowly and steadily in a hospital corridor, are we ever really ready to face it?  Whether it comes peacefully or violently, all we know is that we're forever changed- those that are left behind.   

 

Maybe the only hopeful part I can glean from it all is that we- the ones who are still here carrying on- ultimately get to decide how it changes us.

 

The next morning, I rode with the chaplain from one of our local hospitals to a small town about 45 minutes away.  And death, again, was the topic of the conversation. How could it not be?  In her many years of work with hospice and palliative care, she shared with me that most children have a keen sense of their bodies and their time. They don't find it difficult to talk about death- or at least, not in the way most adults do.  This little girl knew exactly what was happening and she was okay with it.  In her five short years, she had never known what it was like to not be in the hospital, to not be sick.  She had fought a battle that most could never begin to understand and it seemed she was relieved to know that she didn't have to fight anymore.  I felt my stomach sink as we turned into their driveway and asked for a minute to collect myself.

 

I'm not sure what I thought I was going to see.  As awful as it is to say, I had steeled myself against the image of a sleepy, sickly looking girl, bound by tubes and the look of death.  I guess I had wanted to prepare for the worst so that I wouldn't react too strongly.  I warily made my way into the house and was greeted by several family members- her aunts, uncles, cousins, and grandmother.

 

And then she walked into the room and my mouth almost fell open.

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She was stunning.

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There she stood, quiet and shy, in a red sweater dress and black boots, with a shiny bow in her hair and a little bit of makeup.  I was all at once amazed by her light and broken by her wise, old eyes.  And somewhere deep inside me, a small ember of hope was ignited that maybe, just maybe, she was going to pull through this.   And then I watched her mother and noted the far-away look in her eyes.  I tried to imagine the kind of strength she possessed to have a house full of family and a strange photographer, the kind of presence she had to be able to carry on, to try and smile for the camera- or in the very least, not cry.  The photographer in me knew I should stay behind the lens- that was what I was there to do, after all.   But the mother in me wanted to throw my arms around her.

 

 

And yet, somehow, in the midst of screaming babies, a curious pet bunny named "Princess," aunts and uncles and cousins and close quarters, moments happened.  I was scared they wouldn't.  I was afraid that we might all need to be propped up in a corner somewhere.  Perhaps I should've spoken for myself.  I think I was the weakest one there.  We didn't fall apart- at least not right there.  And though there were brief moments of far-off stares, deep breaths, and glassy eyes, there was love.  Love, and a kind of quiet dignity that I've never encountered before.  I watched as people smiled genuine smiles.  They hugged each other, gave pecks on cheeks, and rubbed backs reassuringly.

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After a while, we decided to move outside, and I found myself grateful for the change of pace and fresh air.  Almost as if stepping outside had flipped a switch, the subdued group of kids who, only five minutes earlier had posed rigidly on the sofa, came out of their shell.  They stuck their tongues out at me and struck poses and giggled.  Pure inhibition and innocence.

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And as we moved further out into the yard, the kids started to dance.  She danced. For those few minutes, she was just another kid playing with her cousins in her backyard. A little girl who wasn't afraid to die, and because of that, wasn't afraid to live fully in every moment she had left.

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And my moments have been different since meeting her. To this day, I hope she knows that. The moments I spend holding my kids and my husband are longer and sweeter. The times around our table are filled with more gratitude than they've ever been before. Even the scary moments have been stripped down and exposed for what they really are.  I might have given them images on a disc, but what they gave me far surpasses that.   

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And so it turns out that the best gift I received this Christmas wasn't anything I thought I wanted. In fact, it's the very thing I tried to avoid. A 5 year old girl who wasn't afraid to let go, showed me what it means to reach out and embrace everything that I have in this life.

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“I believe that imagination is stronger than knowledge. That myth is more potent than history. That dreams are more powerful than facts. That hope always triumphs over experience. That laughter is the only cure for grief.   And I believe that love is stronger than death.”   ~Robert Fulghum

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Anijah lost her battle on December 24th, 2012.   Rest in peace, sweet girl.  

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