The Story of One Amazing Girl (and my favorite photo subject) and her Family

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Eight years ago, I did a newborn session for one of my good friend Sharon’s 16-day-old daughter.  I had photographed her two older sons in prior years and I was thrilled to be the historian for newborn images of this little girl. We had a nice session, although little Shaylie slept through most of it and I focused on shots of a tiny hands, feet, and a sleeping infant who already had eyelashes to die for.

Although Sharon seemed a little concerned at her daughter’s excessive drowsiness, no one could have imagined that within twelve hours, I would receive a phone call from the family saying that Shaylie was in intensive care after they found she was not breathing and had blue lips.

I’ll use Sharon’s words here to describe what happened next:

Brian gave her some rescue breaths and called 911.  In the first 24 hours at the hospital, Shaylie died and was brought back nine times.  She was misdiagnosed for the first week and a half; we were told that there something catastrophic happening in her brain and it was possible she was brain dead.  Brian and I never believed that as we saw her vitals change when we talked to her or read to her.  Shaylie was on life support for a little over a week, they diagnosed her as having a left MCA-M2 stroke, then after a week her lungs collapsed and she required blood transfusions – which luckily Brian was a perfect match. 

So began a new life for Sharon and her family.  After two weeks in the hospital, Shaylie came home but her challenges were ongoing.  At five months of age, she was completely blind because of a cortical visual impairment.  By one year of age it was also apparent that she also had Cerebral Palsy.  It was determined, at age four that she had been living with a staph infection she got from her hospital stay;  treating this helped ease her seizures and discomfort.

Despite her trauma, challenges and diagnosis, Shaylie has been thriving under her parents’ and siblings’ love and meticulous care, a support group of doctors, therapists, teachers and care givers, an unending search for new and non-traditional treatments, and as her parents say, “…people all over the world praying for her, including Catholics, Jews, Buddhist monks and more…”

Shaylie is quite a remarkable little girl.  She toilet trained herself by age two, spoke on time, although her articulation is just getting clear now, she went to a regular preschool (with her mom’s support) and was loved by her teachers and classmates.  Like her brothers, Shaylie also has natural musical gifts–perfect pitch and rhythm since a toddler.  I remember in many of her photos sessions, Sharon would sing to her and let Shaylie finish the son, or we would play a tape of her favorite songs.  The music calmed her,  I could see she was always listening and it was obvious the delight she had in the music.  (I learned a lot about photographing a child that doesn’t often look to the photographer but but responds to audible cues.)

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Her visual issues have mostly, but not completely resolved itself and she taught herself to read and use a computer although the doctors had doubted she would ever be able to see a keyboard.

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Shaylie even became a great equestrian and independent horse-back rider who loved to trot and jump bareback.  Just last spring she was beginning to walk independently when her horse was spooked and bucked, throwing her and resulting in a broken right femur (lher knee was actually upside down and backwards), broken right radial bone and soft tissue damage to her back.  Shaylie is right hemiplegic–so this is her weak side that was broken and in casts for months.  This set her back in her walking, although she still did yoga in her casts.  I was so happy to to hear just yesterday from her mom, that she walked unassisted again.

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These days, Shaylie has vision at Camelot Elementary with FCPS one hour a week; music therapy/piano twice a week; hippo therapy (riding) once a week; speech (once a month consultation at Fairfax Inova); yoga once a week; Anat Baniel physical therapy once a week; acupressure once every two weeks; and homeschooling with her tireless and admirable mother.  Note: At a future Shaylie photo session,  I need to make sure Sharon gets in the picture as the two are so connected, and I love photographing that relationship.  That goes for the whole family.  I believe Shaylie has accomplished so much because of her whole family.

Hopefully the photos I’ve taken of her and them throughout the years demonstrate that love.  I have enjoyed being able to help this family document their life and their love.

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