Celebrating Riley Victories

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Riley Lesh, Indianapolis, performing a gymnastics routine

My husband and I found out we were expecting in September of 2001, just days after the 9/11 attack.  We had many conversations about our baby's future. It was limitless. She could be a doctor or an athlete or even the president. She could be and do anything. We worried about terrorism but we never thought to worry about her. 

Our world fell apart when in March of 2002, she was born 15 weeks premature. She was immediately taken to Riley Hospital for Children. She weighed about a pound and a half and was 13 inches long. The doctors were frank with us. If she survived, she was facing a long fight. There was a 90% chance that she would have lifelong complications such as asthma, cerebral palsy, learning disabilities, blindness or deafness. We stopped talking about her future and focused on her survival.  

We learned to take each day one at a time. Sometimes, we took it one minute at a time. Her victories were small but we relished each one. Whether it was increasing the amount of food that she ate each meal (she started at less than a teaspoon) or gaining an ounce, her care team rejoiced with us. Some days, the victories were larger like the day she got to start wearing clothes or the day she moved into a regular crib. There were high fives the day she got to take her first bottle.  

Ninety days after she was born, our daughter Riley was sent home with us. She came home on oxygen and with a feeding tube. But gradually, we were able to wean her from those. We waited and watched to see what her future would bring. There were tears when she rolled over, sat up, spoke her first words and then shockingly, walked before her first birthday. Those are all things that most people take for granted but for us, they were victories worth celebrating. 

When Riley was four, one of her NICU doctors suggested that we try putting her in gymnastics. We thought of it as physical therapy and socialization. She loved it. At times, she would struggle with a skill and I would wonder if it had something to do with her prematurity, but just like in the NICU, she was just on her own schedule.  

Riley is now 14 and a freshman in high school. She's still a competitive gymnast as well as an honor student. In April, her XCEL Platinum gymnastics team won the USAG Indiana State championship. Both her future AND her present is open to so many possibilities.   

For months now, she been talking about the 2016 Summer Olympics, most notably the USA Gymnastics team. This is not a surprise to us. She watches their routines in awe, with an occasional "someday I'll be able to do that!" She talks to other gymnasts in a language that many people don't understand, full of terms like "salto" or "hollow" or "yorchenko." Her hands are roughened from years on the uneven bars, more like a seasoned construction worker than a typical teenaged girl. She has learned to recognize victory in ways other than just the medals she earns at meets. She knows how to get up after a fall and fight through seemingly insurmountable fears and battles. She learned that at birth and from the amazing Riley kids she has met. In fact, when she needs extra inspiration in training, she will attach the name of one of her friends through Riley or Children’s Miracle Network Hospitals to her clothes.  

I think back to our time in the NICU often. A lot of the little details have faded in my memory but what hasn't faded is my appreciation. Like the Olympics, it took a great deal of teamwork and attention to detail to keep our daughter alive. It took an amazing amount of heart and fight from her. It took a little bit of luck.

I know that Riley looks up to those five Olympian gymnasts for their guts and their skill and their victories, but I'd like to think that if they met her, they would look up to her as well.

Julie Lesh, Riley Parent

Julie is the mother of Riley Lesh, a former Riley NICU patient and 2014 Children's Miracle Network Hospitals Champion for Indiana.The family has participated in more than 130 Riley Dance Marathons.

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