Life With Livy Videos


Episode 11: 6/18/2012 - I Am Livy

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.


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