Friday, October 8, 2010

exceptional kids (and their families)

I'm not in love with the phrase "kids with special needs." It sounds sad to me. I prefer "exceptional kids" or something like that.

We met a bunch of exceptional kids last week.

As we walked the halls of the various research facilities of that remarkable place we call the NIH , it broke my heart to see some of them. The ones racing each other in their wheelchairs...legs so small and weak resting calmly in their chairs while the rest of their bodies flailed about in the race. The bald little girl with deep, dark circles under her eyes hugging to her mother's arm. The tiny fifteen-year-old boy waiting for a transplant of some kind with the wit to keep Dave interested in his football expertise for a long time.

There was the sweetest eight-year-old in the waiting room with us one of the days we were there who Lucy from that point forward claimed to be her new best friend. Lucy wasn't phased by the fact that half of her dear new friend's face was hugely swollen three times the size of the other half and that she only had one working eye.

We saw the looks in the parents: the bravery. the heart-wrenching worry. the exhaustion. Some families stay there for months. Some come on a regular basis. They have the routine of getting through all the serious security and shuffling through to doctor after doctor down pat.

Their strength is inspiring.

Before we left on our trip I had the opportunity to photograph one of these exceptional kids.

No, I don't do photography any more, but I couldn't turn this little girl and her family down.

Meet Esra and her wonderful family:She has a syndrome all of her own and she needed a way to get around and be able to function in life with her limited mobility.

And her amazing family figured out how.

They found a guy in England who made this special chair for her.You should see her maneuver that thing around. She's a pro.

They have overcome a bunch of odds.
Because of strength and sheer grit.

And mostly, because of love.This little sister of hers will never know the difference. She loves to ride on the back of that chair, and is used to waiting for her parents to maneuver setting it all up when they get new places.
Check out more details about their story and how it all began here and here.

I'm so thankful for inspiring examples.

P.S. I just read this great quote on an email from the Foundation for the Blind and thought it was perfect for this post:

Nothing in this world can take the place of persistence.

Talent will not; nothing is more common than unsuccessful men with talent.

Genius will not; unrewarded genius is almost a proverb.

Education will not; the world is full of educated derelicts.

Persistence and determination alone are omnipotent.

The slogan 'press on' has solved and always will solve the problems of the human race.

-- Calvin Coolidge

15 comments:

  1. Beautiful pics Shawni! What a beautiful little girl! I am SO thankful for my childrens' good health and strong minds and bodies.

    I pray that all will be well with Lucy. Families like yours and the one pictured in this post are blessed with extraordinary children because of the love, faith and strength which they contain. Thanks for inspiring me today...like always!

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  2. Oops! The comment above was from me. My daughter was still logged in...

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  3. What an incredible trip/journey!I
    love how you captured the good & bad with the hospital stay!

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  4. Hey, I know about this family! Esra's dad is the brother of one of my great friends. I know all about their faith and determination and hard work and love. Thanks for posting about them--Esra's sweet smile is full of courage.

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  5. What a beautiful little girl, family and story. Thank you for sharing it with us. I will keep them in my prayers.

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  6. I'm so glad you wrote about this. One of the things that is really difficult for me to talk about when it comes to our hospital experiences is the other families and children that we meet. My own troubles seem awfully small when I see what others are dealing with. During one of our first, long hospitalizations, there was a little girl down the hall from us that I just loved. She had very little family support, so the nurses would let her walk around the unit with my daughter and I. She called me mommy. It broke my heart when we left, because I couldn't go back to visit her without her family's permission. I've always wondered how she is doing.

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  7. Wow! That quote was just what I needed today. Thanks for sharing this story. I love how the world through your eyes always is full of light.

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  9. Oops--sorry about that!

    Shawni- Thanks for your blog and your beautiful posts. I really appreciate the fact that your posts have substance. They make me want to improve and be a better person.

    ~Sheila

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  10. such a good quote! She is a beautiful exceptional little girl! you captured her perfectly :)

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  11. oh what a beautiful girl and what a beautiful family. You've brought tears to my eyes because of the love and happiness you can see in their faces.

    beautiful photos
    Corrie;)

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  12. Seeing this valiant family is just such a good reminder to be grateful for your own trials! What an adorable child!

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  13. I love seeing these pics! Bob and I were driving on Gilbert road and happened to see you doing this photo shoot. I'm glad you posted them! What a touching story, thanks for sharing it with us!

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  14. i work for a special needs foster care agency. one of our foster parents has adopted four children with needs that are more than challenging at times. she shared this with me a few months ago and i've been meaning to pass it along to you...
    http://www.our-kids.org/Archives/Holland.html

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  15. I found your blog this week and I was looking through your photography posts - they are wonderful. Then, I saw this post and recognized this beautiful little girl from when I worked with her years ago while I was working at a preschool in Connecticut! What a small world!

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