Remembering Karley's Fight - Chedda Condition

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Remembering Karley's Fight - Chedda Condition

Karley has a newly discovered condition called CHEDDA and is the 9th known case in the world.

she will have an array of physical and mental disabilities but She is our rare, little unicorn �

31/12/2024

As I was doing stockings tonight (we haven't had our family Christmas yet :-) ) I was reminded again how Karley's stocking will never again have toys and goodies in it.
This year, instead of an empty stocking, we put some birthday balloons to celebrate her December 17th birthday ❤️

It's adapting to the change and moving forward, differently. The pain, the grief, the longing to hold her is still there, but carrying that is more manageable as life changes and moves forward with new and different experiences.

Merry Christmas Karley Josephine! 🥰

18/12/2024

December 17
Karley would be turning 6 today.
We started the tradition of driving around, looking at Christmas lights. She had very limited sight but I wholeheartedly believe she could see the contrast of the lights, especially the bright, flashing ones.
We got some pizza and sang Happy Birthday while enjoying some birthday ice cream.

The picture of the little girl with Jesus is such a strong, powerful image. She is whole again and we are reminded of his love and the excitement!
We love you so much Karley!
Happy Birthday!

01/11/2024

Karley didn't get too many times to dress up but she was the cutest little mouse for one Halloween. 🥰

20/09/2024

The Hawkeye Wave is now more than a gesture, it’s a location. The street just south of our hospital has been renamed Hawkeye Wave Way in honor of the best tradition in college sports. With a gold and black street sign, it will be easily recognizable for many patients and their families. http://spr.ly/6183o8ty5

01/05/2024

This past weekend we attended the Stead Family Children's Hospital annual Remembrance Service.
We haven't gone every year but it's nice to go on occasion to just set aside some extra time to celebrate and remember Karley's life. We even sat at a table with a couple from our surrounding area and we talked about our children and their impact on this world. Everyone in that room had lost a child and sometimes it's nice to be around people that know some of your exact same struggles and grief.
The first two photos are on their rolling slideshow and a reading of the names.
We miss that little girl soo much!!!

21/02/2024

Late posting but we had taken some Valentines things out to decorate her graveside.
She was our lovable Valentine and we see so many cute things in the store that we get to either put out at the cemetery or to have at home in her honor :-)

20/12/2023

Happy birthday to you, happy birthday to you, happy heavenly birthday dear Karley, happy birthday to you ❤️🥹🎂

5 years old on December 17th

18/12/2023

Today is miss Karley's heavenly birthday! Hard to believe she would have been 5 years old today...
Around Christmas time, we would always go and look at all the beautiful lights. I would occasionally catch Karley shifting her head so she could see out the window. The contrast of Christmas lights at night allowed her to see glimpses of them with her limited eyesight; add that to her mobility delays and it was truly amazing to see those little reactions ❤️
In honor of her birthday, we always go out on the 17th and drive around looking at lights, eat pizza, have hot chocolate and cupcakes, and sing "Happy Birthday"
Tonight we even had a beautiful sunset to mark the occasion. 🥹❤️

10/04/2023

Happy Easter Karley! You have the best Easter gift of being with Jesus!

We miss you and know your having a great day having an Easter egg hunt with Jesus 😊

#2023

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