Spina Bifida

You Are Not Alone – The California Story

Have you ever felt like you were the only person in the world going through a difficult time? Just the feeling of thinking you are the only one dealing with your problem can make it harder to deal with.

During the making of Future American President, it was important to find children with disabilities, but finding children on the road would be challenging. I know a family in California with a disabled child and asked if I could include their daughter in the book. I didn’t want her to be the only child in the book with a disability so I sought to find others.

I shared my vision of including other children with disabilities with friends, and a buddy told me he knew a woman whose child suffered from a disability, but he wasn’t sure about the specifics of her condition. I asked if I could speak with the mother and my friend made the introduction. The first time I spoke on the phone with the mother she was curious about the project and told me she would like for me to meet her daughter first. We made an appointment and a week later I was knocking on their front door.

I was greeted at the door by the child’s grandmother, who welcomed me into their home and spoke at length about my project. Twenty minutes later I was introduced to the mother and learned more about her daughter. As she shared information she explained that her daughter has been in a wheelchair all her life. The more she spoke the more my interest grew in meeting and speaking with her ten-year-old daughter. After about 45 minutes, I still had no idea about her daughter’s particular disability, and then, she told me.

When the mother first mentioned her daughter’s disability I couldn’t believe my ears, but then she shared something that really threw me. She said her daughter feels like she is the only child in the world dealing with her disability. In that moment, I knew God had led me to meet this little girl.

Her daughter has Spina Bifida, a birth defect that affects the spine and is preventable by taking folic acid before and during the first three months of pregnancy. I was shocked to learn of  her daughter’s disability because the first child I photographed with a disability also has Spina Bifida.

Now it was time to meet her daughter. The first moment we met I loved her energy and zest for life. She talked with me for a while and seemed wise beyond her years. She was beautiful, intelligent and strong willed, the perfect combination of qualities necessary to become a future leader. As we spoke, she told me she feels like she is the only child suffering from Spina Bifida, even though she knew there were others somewhere. I told her I knew of another little girl with Spina Bifida and that she too, is included in the book. She was surprised, so I asked her if she’d like to meet the other little girl. She said yes, and I promised I would speak with the other child’s parents and see what I could arrange. Before I left, I shared the story about one past American president who lead the country from his wheelchair, and explained to her that she could do anything in her life if she just believed it was possible. We set up a date to do the photo shoot and I called the other parents as soon as I left to see if they were available to meet my newfound friend.

 

On the day of the photo shoot the other parents met me at the shoot location with their daughter and both girls had a chance to meet, and I photographed them together to remember the moment. The connection for everyone involved was wonderful because the first parents have a foundation that helps children suffering from Spina Bifida and were able to give useful information to my latest subjects mother.

 

I left this photo shoot feeling intense emotions because my new friend now knows she isn’t suffering by herself. What I didn’t know is that my journey would lead me to meet another child in Tennessee months later who also has Spina Bifida, but even that wouldn’t be the last child with a disability included in the book.


Always Dream Big