About Nora

My husband warned me not to "get on a soapbox" about Nora's neurological disorder. I think he has a very valid point. This family deserves to be treated like any other family that I have taken pictures for.They have two beautiful kids named Nora and Coen. Mom stays at home with the kiddos, and Dad goes to work M-F. The only difference is Nora's neurological disorder. She has Rett Syndrome.  My only motivation in mentioning Nora's neurological disorder is to raise awareness. You would never guess from the pictures below that Nora struggles with a disorder of any kind.I do not understand fully what it is like to live with a child with special needs. I do not understand all of the complex emotions and issues that this dear family deals with on a daily basis.The only thing I do see or feel is the love these two parents have for their son and daughter.I also felt an urgency to capture their little boy Coen. I'm sure this family struggles with feelings of wanting to give Coen as much care and time as they do their child with special needs. He is just SO happy and sweet. In one picture he is showing me his muscles as Dad looks on. He copies everything you say...including "hey man" after my husband said it to him! I looked the definition up online of what Rett Syndrome is, and this is what the Mayo Clinic writes:Rett syndrome is a rare genetic disorder that affects the way the brain develops. It occurs almost exclusively in girls.Most babies with Rett syndrome develop normally at first, but symptoms start to surface after 6 months of age. Over time, children with Rett syndrome have increasing problems with movement, coordination and communication that may affect their ability to use their hands, communicate and walk.Although there's no cure for Rett syndrome, potential treatments are being studied. Current Rett syndrome treatment focuses on improving movement and communication and providing care and support for affected children and their families.That definition is so cold...so matter of fact... and I just feel like I am fumbling and akward trying to discuss what Rett Syndrome really is and how it affects the families that have to deal with it.At this point, Nora can walk. Nora does have trouble with fine motor skills and communication. Although her family is very in tune with her needs, and use a process of elimination to help her. I don't have any pictures in the sneak peek of Dad wearing his purple bracelet, but in the final post there will be some. The purple bracelet is to help raise awareness about Rett Syndrome. There are a lot of unknowns about Nora's future. I think for this reason I felt an urgency to capture this family right now...in this moment with their children as best I could.The race to find a cure for this devastating neurological disorder is on. Kristy has written on her blog http://johnsonsnews.blogspot.com about how close they are to finding a cure.This month also happens to be Rett Syndrome awareness month!If you interested in learning more about Nora's neurological disorder or donating to help her and others with her disorder or if you have a child with Rett Syndrome or know someone who does and you just want to chat please contact Kristy at kristine.a.johnson@gmail.com.Hope you enjoy!The Rancher's Wife KatePS Words really can't do justice for how I feel about these pictures, but let's just say they are going in my favorite pile.