Love selflessly, unconditionally and like today really could be your last day with your child
This was my first session with a special needs child. I had no idea what to expect. I think they found me on a Google search. I was honestly a bit hesitant as I had no idea what to expect…in the end it saved my career.
Newlyweds, Annie and Ryan Landefeld, were delighted to discover they were expecting a baby just weeks after sharing their marriage vows in September. On June 20, 2009, they welcomed a healthy, beautiful baby girl, Scarlett Rose, into the world. Scarlett passed all newborn screenings with flying colors. Beginning around 10 weeks of age, they noticed that Scarlett wasn’t moving her legs, arms and head as much. She appeared to be floppy. They knew that something wasn’t right so they decided to seek the help of a Neurologist. On September 11th, after extensive medical testing, they were given a devastating diagnosis of SMA Type 1 (www.fsma.org), which stands for Spinal Muscular Atrophy.
SMA is the leading genetic killer of infants. It is a rare, genetic disease affecting part of the nervous system that controls voluntary muscle movement due to the loss of nerves in the spinal cord. One in 6,000 babies is born with SMA, and 1 in 40 people are carriers. Ryan and Annie are both carriers and unknowingly passed their copies on to Scarlett.
Scarlett will never be able to walk, stand, sit, eat, breathe and even swallow without assistance. All of her muscles are extremely weak, with the weakest muscles being the legs, upper arms and neck. Her mind and spirit are no different from that of a healthy baby. She has a bright, expressive face and eyes.
Scarlett faces a difficult battle and requires extensive medical support. Care interventions have been established to help with breathing and feeding problems, muscle weakness, bouts of illness, and discomfort. They are consulting with doctors and pursuing any treatment that might save their baby girl.
Special needs children were a part of my elementary school, as we had half of our school occupied by children with special needs. I don’t recall ever thinking they were really that “different”.
I was meant to photograph this family, I knew it in my heart. The light was GORGEOUS, the day was beautiful… I had just finished a session with a family that, unfortunately, didn’t have a real connection. This is hard for me and at times, disappointing. Unhappy kids, mom is too worried about the kids, dad is mad at mom for making him do this…just the normal things. But in the busy season it can wear me down emotionally. I’m giving my all, my heart and soul to each and every session and at the time, felt no reciprocation. Until my INSPIRED shoot. The parents were in love with their daughter and each other. They ‘d fought more battles than anyone could ever imagine…but they were HAPPY.
I had a renewed sense of family, what it truly means, at it’s core. Love selflessly, unconditionally and like today really could be your last day with your child.
They loved their photos and that of course felt wonderful that my client was happy. What they gave me to me was more than they will ever know.
// Leah Brady Photography //
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