Twisted and contorted I came screaming into life. No one had ever seen a baby like me before. The first 24 hours was a roll coaster for my mom. "She will never swallow, she is blind, she is deaf, she will never move, she is cognitively impaired and she may die within the next 24 hours!"
This was my mom’s first conversation after awakening from the c-section.
However, my mom had faith. And with her faith and her endless strength I was only affected from the mid-thigh down. I did not have kneecaps and most of the bones in my feet were missing or in the wrong place. My muscles were very tight and I could not bend at all! My legs looked like they were on backwards, and the banding was isolated only my lower extremities.

From 1 month old to 6 years old I was in and out of surgeries and casts. However, throughout all this my spirit and confidence were growing rapidly. I was never given the option to give up or stop exploring playgrounds or the simple’s things as a toy store. I have to say, it was hard, very very hard to accept that I was never going to walk, well if I can be honest it was mostly hard on my mom. I spent countless hours crying with her. But the bottom line is, I am healthy and happy, I just can’t walk.
I know, I know, easy to say now, and easier yet to say when I am not your child. Truth is, there are situation much more difficult and tragic than mine, and we will survive and thrive, no matter what! And that is the attitude I have to have to get through!!

Now let’s get to the most extraordinary life changing moment. Are you still comfortable cuz if not get cozy cuz let me tell you this moment will forever change the way you look at life. Remember I am healthy, sweet and smart, sassy and ever challenging. Just like I should be, just like I always have been and I can breathe again. Is this anticipation killing you well hold on I promise I’ll tell you.

It was January 2014 I was with my mom and a typical checkup appointment, as my mom had to leave to room for a moment I took this opportunity to show my surgeon something I had been working on “walking on my knees”! This was something that seemed impossible to everyone but ME. I raced down the hallway like something was chasing me, but when I turned around doctors, my mom and many others mouths were wide open and it was silent. WHAT THE HECK! Well, it turns out that I am and will always be 1 in a million. That whole "walking on her knees" thing was a new development that my doctors found very interesting and I was quickly taken in to have new x-rays done.

OK wait a minute, what's going on?

Well, turned out that my scoliosis, torticollis and kyphosis had become "functional". But most importantly I proved that my muscular/skeletal system could bear my own weight. By developing my own funny little way of walking on my knees I proved that I could hold myself up and that my legs rotated in the hip sockets correctly.
OMG this whole time no one realized that what I was doing was getting myself ready to walk, really walk. I'll never forget when the doctor said, “we were just waiting for Lilly to show us what she could do"! My response was, "I want to walk". But in order to achieve that they said I would have to have both legs amputated at the knee.

Wow, you want to talk about choices! God Bless my mom, try making that choice for your 6 year old daughter. It was a long ride home that day. Long and very quiet. Our world (weird as it was) had just taken an enormously different and new direction. Don't misunderstand me, my mom has been making impossible decisions for me from the time I was born ……. but really. . .

My feet hurt more often, they were cold most of the time and I was well aware that they didn’t work. I know that my mom and I were facing a serious surgery and big changes however my mom was very pragmatic about it all. Believe it or not my only questions were “where do my legs go when the doctors take them and will they grow back?”. “Will my new legs have toes that we can paint - and can I walk?” We talk about it every day and with each question comes more realization that life is about to change again, for the better! Strange funny little things have helped put it into perspective for me, like my mom took the bottom part of a Barbie doll legs off and showed me how it would look. Shriners gave me a teddy bear who had had an amputation, we read books on amputation and have talked to a child psychologist, all in preparation. Honestly, I think what helped the most was that my mom repeatedly telling me that regardless of what we do, I’m will always be fabulous. I’m smart, witty and strong willed. Regardless of what legs are, can or cannot do, I will be just fine and I’m loved with or without limits!

Have I lost your attention yet? Are you still on this journey with me? Great because my life changing day happened on February 13, 2014!!! Whooooooo! Excited but terrified. Have you ever felt like singing out loud, dancing through the house with complete abandon, and rejoicing over every moment of every day? Well that's sort of the way I was feeling! My mom felt like she hasn’t been unable to adequately describe what this journey has really been like but today, finally, both she and I feel free again!

This story was submitted by the child, with permission from her parents, exclusively for use by Operation Dez Strong.