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 Kate

PS 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.

    

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wendy terry - January 27, 2012 - 6:44 am

I am looking at these pics for about the 6th time and each time i am overwhelmed by emotion…the pictures capture this loving family and the information about what your thoughts are on raising children with Rhett’s…gosh Katiedid, great job to raise awarenness for this…you may want to send these with your thoughts to their official web site…if there is one, because it really helps us all to know more about this. Here i have been a nurse for 20 years, but had never even heard about this…xoxoxoxoLove to all, xoxoxomom

Michelle - October 25, 2010 - 9:26 am

Here I am, teary in Texas. Awesome pictures, you captured them so well. The one of Justin and Nora perfectly captures all the feeling he expressed in one of his blog posts about Nora months back. Yes, these need to be in your favorites pile.

Gretchen - October 22, 2010 - 6:23 pm

What a gorgeous family and what tender moments you’ve captured. I’m so glad you shared Nora and her story. Thank you.

The Rancher's Wife Kate - October 22, 2010 - 8:37 am

Notice my problem with saying SO way too many times? HA

The Rancher's Wife Kate - October 22, 2010 - 8:36 am

Thanks everyone for your kind comments. Everything just lined up for this evening shoot! The weather was beautiful…the wind just right…the kids were happy and mellow.
It was just a really fun shoot, and I think you can tell from the pictures.
There are so many variables that could go wrong when you are dealing with mother nature and little ones. I was so happy that it went so well.

wendy terry - October 22, 2010 - 5:54 am

This is really a landmark post of pics…absolutely beautiful family and fantastic job on the lighting and aperature settings…Katie…you have really ARRIVED. xoxoxoxoxoLove, Mom

Lois---Your adopted granny - October 21, 2010 - 8:20 pm

What beautiful pictures and post for a special family and especially Nora. It is so wonderful to hear of all her progress, see her videos and know there is progress being made. Give her an extra hug and we hope to see her soon. GO NORA!

Papa Ken - October 21, 2010 - 6:23 pm

Ausome pictures sure hope there are some breakthroughs soon on RETTs.I want to see all the pictures too.These are very touching makes tears come to my eyes too!

Jen - October 20, 2010 - 9:39 pm

These ARE truly breathtaking, Kate!! Like others have shared, the images made me cry, too. It probably has more to do with KNOWING the family and knowing how SPECIAL they are! As always, though, you captured them in their full beauty! Great photos!! 🙂

Jennie - October 20, 2010 - 6:36 pm

Wow, words are beyond me! These are absolutely beautiful pictures of a beautiful family inside and out!

heidi h - October 20, 2010 - 5:42 pm

these are precious!

Kristy - October 20, 2010 - 5:32 pm

You guys are a-bunch-a babies! Just kidding ;o). It’s funny reading about everyone crying, tho… funny, not quite the right word. I don’t laugh at crying people. Anyway, that probably didn’t come out right in writing. Hopefully you all know my sense of humor! Kate, I wanted to thank you again. I’m glad you got that owie off her face. She really beat her face up this past week. I think I let her nails get too long. 🙁

Myrna - October 20, 2010 - 4:44 pm

I can’t even express how wonderful these pictures are Kate. They made me cry too. I wait to see them all!

Jocelyn - October 20, 2010 - 4:36 pm

Wow! I love these…they made me cry!

ESTHER - October 20, 2010 - 4:10 pm

Beautiful, Kate. A record of precious memories. Got to enjoy this family a bit last week. A special time.

Lisa - October 20, 2010 - 3:56 pm

Oh my goodness, Kate. These are incredible. What a lovely post as well…made me cry. The way you capture so beautifully the ones that we love is…magical.

Linda - October 20, 2010 - 3:40 pm

Super pictures and great post. Linda

Justin - October 20, 2010 - 3:07 pm

Wow, Kate. You really “got” us on film. Thanks for posting!

Kelley - October 20, 2010 - 2:40 pm

What a beautiful family! Thanks for sharing the pictures and raising awareness.

Kristy - October 20, 2010 - 2:29 pm

This definitely made me tear up! All I can really say is: Thank You, Kate! I LOVE them. Can’t wait to have them on my wall. Can I just make it a wallpaper to cover my entire house with??!!?!

candy - October 20, 2010 - 1:57 pm

Oh my word…this post made me cry!!! I’m so lucky to know this beautiful family too and I’m glad you captured their affection for each other. Beautiful shots of a moment in time.

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