It's hard to put into words what meeting Lily did for me. Lily has a rare neurological disorder called Rett Syndrome. Her mother described her syndrome to me as being a combination of the symptoms of Autism, Cerebral Palsy, Parkinson's, Epilepsy and anxiety. Although Lily can't walk or communicate through speech, she absolutely communicated with me and her with her family during our short meeting. Her eyes are bright and her smile is big and genuine. She looks at her mom the way every 6-year-old girl does; with love and admiration. She absolutely adores her older sister, Grace, and it shows. Although I did this shoot to give something to a family that would allow them to remember the good amidst the range of emotions that come with having a child with an illness, I feel like I was the one who walked away with the most.
On my drive to meet them, I was frustrated with traffic. I was frustrated with how tired my pregnancy has made me from day to day and my mind was filled with all the stress we all have in our everyday lives. Then, I meet Lily. I meet her mother, Jenny and her sister Grace. They are happy, grateful, energetic and everything we should all be. It was such a humbling reminder of how much I have, and not because they have less. Several times during the session, Jenny told me how happy she was that her daughter smiled so much, that she hasn't yet been burdened with the seizures that many other Rett syndrome children have and that she was just grateful to be able to hang a happy memory of her little girl on her wall. Despite their struggles, there is so much love, appreciation and positivity in this family. My drive home was very different that my drive there. Thank you, Lily, for reminding me to see the bright side.
This is what Lily's mother, Jenny, had to say about her daughter:
Although Lily cannot walk, talk, or use her hands in a purposeful way, her bright eyes show she understands much of what we say. Her beautiful smile lights up a room and she brings us so much joy! Some see a little girl who can't walk, but I see a miracle that doesn't need words.
Please check out www.rettsyndrome.org for more details on the syndrome and how you can help.