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Livy's Hope Blog

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I Am Livy

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We would like to extend a big welcome to our new friends that attended our presentation at the Family Café Conference on June 16th in Orlando. Thank you so much for taking the time to listen to what we had to say.

I don’t know what it feels like not to be able to speak or to communicate how I am feeling. What if I was in distress but couldn’t tell anyone where it hurt? What if I was hungry or thirsty but couldn’t form the words food or water. What if I simply wanted to say thank you or I love you but my body didn’t allow me to vocalize it or use sign language to express it?

I often wonder what kind of a world Livy must live in. She lets us know if she is happy, sad or generally uncomfortable but we are never entirely certain how she is feeling. It pains me to think that she is in any way lonely or confused. We are left guessing if she is sick or has any type of infection. We have made many trips to the doctor’s office on a hunch that there may be an issue. Over time, our hunches are getting more accurate. We try to understand Livy through interpretation of her demeanor, smiles and what little verbal ability she does have. The sounds she makes usually alert us that something is not quite right.

In the bigger picture, Livy may actually say more than any of us. What she stands for and what she has overcome in her short life inspires people in ways I never thought possible. Her story of hope and the will to live often moves others to tears. She is miraculous in so many ways and I pray that she understands us when we tell her how amazing she is.

This video is entitled “I Am Livy”. It was part of our presentation at the Family Café. We wanted to give Livy a voice during the presentation since she would not be able to participate in the typical sense. We hope it leaves you with a brighter outlook on life and allows you to look at the world a little bit differently.

Thanks for reading!

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Comments 4

Guest - Paige on Tuesday, 19 June 2012 09:52

Ivan and I love this video. We feel Livy's strength and hope when watching it and we know how incredible her family already is-----!

Ivan and I love this video. We feel Livy's strength and hope when watching it and we know how incredible her family already is-----!
Guest - Carol Lee on Tuesday, 19 June 2012 10:38

So beautiful, it moved me to tears. many hugs, Carol

So beautiful, it moved me to tears. many hugs, Carol
Guest - Joanna Cavanaugh on Thursday, 21 June 2012 20:29

I appreciate all your beautiful videos and to see what ALL of you have done,not just for Livy ,but for all of us only able to view her progression through your efforts - Livy shines in the LOVE of her family - You're all to be commended !

I appreciate all your beautiful videos and to see what ALL of you have done,not just for Livy ,but for all of us only able to view her progression through your efforts - Livy shines in the LOVE of her family - You're all to be commended !
Guest - Roberta Greenlaw on Sunday, 24 June 2012 18:27

she was not sent from the angels for you to help her I believe these children are sent to help us. You are a blessed family with precious gift. Livy

Roberta

she was not sent from the angels for you to help her I believe these children are sent to help us. You are a blessed family with precious gift. Livy Roberta
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