Wednesday, March 5, 2008

Close to Heaven

At times in my life I feel very close to Heaven.


Last Saturday, Jaren and I shot a charity event called Rett Rendevous.

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Rett Syndrome is a childhood neurodevelopmental disorder that is characterized by normal early developments but then is followed by distinctive hand movements, slowed brain and head growth, gait abnormalities, seizures, and mental retardation. It affects females almost exclusively.

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As the syndrome progresses, the child loses purposeful use of her hands and the ability to speak. I found myself wanting to know what these little ladies were thinking. What would they like to tell their parents, siblings, or grandparents if they were granted 5 minutes of lucid speech. What joy would their mothers feel to hear them say, "Mama"? How would their fathers feel to hear their daughters share their gratitude for all of their paternal sacrifices? How would siblings feel to hear their sisters joke with them, like brothers and sisters do? What would they say? I am sure it would be, "I love you" or "Thank you" or "Please, stop feeding me peas; I hate them." ;)

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I was magnetized to so many of the girls and their parents. I was especially touched at the resiliency in their attitudes and the strength of their courage and spirits. I felt endeared to the parents. Raising children in this world is a challanging task; raising children who will always be children is even more daunting; however, every parental perspective I heard that evening was filled with love, encouragement, and hope- for their daughters and for finding a cure.

One resplendant mother.

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A characteristic of Rett Syndrome is compulsive movements like hand wringing. I watched their little hands; even though they don't have perfect control they still found ways to be quite expressive and communicative.

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The event was filled with entertaiment,

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dining,

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dessert,

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dancing,

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hula hooping :),

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and fundraising.

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There currently isn't a cure for Rett Syndrome, but scientists, doctors, parents, and I am sure the girls themselves are hopeful.

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In Les Miserables, one of my favorite Broadway musicals, there is a line sung at the end of the play. I think about it often, "To love another person is to see the face of God."

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The family members related to these "silent angels" see the face of God everytime they look at their daughters.

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Joanna and Maren- Thanks for thinking of me. I enjoyed being with you two as well. Next time, don't hang out by the bar so much. You started slurring pretty bad by the end of the night. (Ha! I'm totally, completely joking!) ;)

Misty- Thank you for the opportunity to be a small part of something tremendous. Your efforts are leaving indelible marks on the life of your daughter and many others. You might never be able to hear it, but Kennedy is grateful.

For those of you intersted in learning more about Rett Syndrome and how you can help make a difference click here.

17 comments:

Brooklyn said...

You have captured the spirit of our little girls in these pictures, they are beautiful. I actually was not at the event. I live in Indiana but have a 2 year old daughter with Rett Syndrome. I came across your blog this morning in my goolge alert about Rett Syndrome. Your words were touching to me. Thank you.
Kelly,
Mom to Brooklyn (age 2)
www.brooklynbutler.blogspot.com

Olivia said...

gorgeous words and pictures, kam!

shahba-gahba said...

I LOVE this post. Though I only know these girls from your photos, the pictures seem to radiate their essence. I feel like you have given me a glimpse of who their parents know them to be. You take lovely pictures.

hansenfive said...

Kam, you really did it this time. The pictures are beautiful and so are the children. What amazing women these moms are for their strength.

Tonya said...

What a blessing to capture even just a simple moment of the lives of these little angels. I am touched by this sweet post.

Thank you so much for sharing and for the perspective your camera can bring to all of us...

Tonya

Paige said...

Kamee, these pictures are so beautiful. I think it's so fantastic that you went out of your way to learn about th condition so you could capture all the little parts of it that mean so much to those around them. Great work!

Jennifer P. said...

I love all the photos!--I think anytime you can put a face to a condition, it helps people understand so much better.

To know that these girls are so close to heaven makes it all the more beautiful. Thanks so much for sharing.

Rebecca said...

You failed to mention tissue essential at the beginning of the post. I was very touched by your post. But mostly by the quote from Les Miserables, I shall always think of it. Lovely pictures BTW, oh if I could only shadow you for a day, then I could figure out my camera better!

me said...

How beautiful - I often think how hard it would be. What wonderful families and mothers.

D Baker Photography said...

Kammee, I don't have words. I see my precious boys everyday and I know how greatful I am to have them. Great job for an awesome cause.

shannon said...

Oh, wow! Kamee, I'm in tears. I'm moved by these wonderful little faces and the artful way in which you captured them. You can see their sweet souls, radiant and pure. You are amazing.

Kate said...
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Kate said...

I've been meaning to call or write you ever since you mentioned in a previous post that you'd be photographing this event. My cousin's daughter was recently diagnosed with Rett Syndrome. We've been learning a lot about it. I love seeing these lovely pictures. I will share this post with my cousin. You did a wonderful job.

Kimberly said...

Kam,

Not sure what to add that hasn't already been said. You know I live in the non-profit world...it is always about capturing people by tugging at their heartstrings as well as educating and bringing awareness. Thank you for opening my eyes to something I knew nothing about. AND thank you for invoking the humanity in me and giving a little tug on my heart through your words and pictures.

Beautiful pictures and a beautiful tribute. I love ya girl.

Sheryl said...

Kamee, Everyday, I get to work at a school for severely handicapped children, and we currently have 3 Rett girls enrolled, and have had others go thru our program. You did a fabulous job capturing the essence of their perfect spirits inside their bodies of limitations. Amazing, touching, so you!

caitholmes said...

Wow...this was one of your best yet! I found your words to be so moving and your pictures were amazing. This makes me want to go back to CHOC hospital and volunteer like I used to! You have such a big heart and you always seem to use it in just the right ways (most of the time blowing my mind). You make me jealous every time I read your blog; a good jealous though :] I'm so happy that I know you...

Joanna said...

What a sweet experience! Thanks for sharing - it brought a tear...