Brace for Courage

By Ally Wall

Lily Bennet, age 15, lives every day with limited use of the right side of her body. She struggles to put on shirts, to button her jeans, to unscrew the cap to her toothpaste and water bottle. She struggles tying her shoes, she can’t fully participate in sports and she finds difficulty in making a simple peanut butter and jelly sandwich.

While inside the womb of her mother, Jackie, Lily and her twin sister Leah struggled to survive. Leah passed away inside the womb due to the rare medical condition called twin-to-twin transfusion. According to Johns Hopkins: 

“Twin-to-twin transfusion syndrome (TTTS) is a rare pregnancy condition affecting identical twins or other multiples. TTTS occurs in pregnancies where twins share one placenta (afterbirth) and a network of blood vessels that supply oxygen and nutrients essential for development in the womb. One twin — the donor twin — gives away more blood than it receives in return and runs the risk of malnourishment and organ failure.”

As a result of twin-to-twin transfusion, Lily suffered a stroke in utero which inhibited the use of the right side of her body and has caused some mild learning disabilities. For years she was forced to wear multicolored and patterned braces on her legs, and traveled all over the United States to go to therapy camps and has been placed in special education classes.

One may begin to think that Lily has given in to the struggles she faces. That she has been defeated by the obstacles of normal life. But that cannot be farther from the truth. Lily is someone who defines courage. She is a fighter.

Since 2016, Lily has traveled to the University of Tennessee multiple times where she spoke to classes of future nurses about twin-to-twin transfusion and what it’s like to be a child who had a stroke in the womb.

After watching her brothers succeed in Navy Junior Reserve Officers’ Training Corps (NJROTC), Lily decided to join the program at William Blount High School in Tennessee. She also made the decision to join the drill team, a unit that performs marching routines and competes against other schools, where she can be seen marching with her team in competitions across the state.

One thing that would never be expected of someone with such limited use of one side of their body is learning to drive. Lily has recently been in the pursuit of her driver’s license, having received her learner’s permit and has been practicing using both sides of her body behind the wheel.

Lily is close to my heart — she’s my cousin. Growing up, there was never a time when she would throw in the towel and give up. She was always there sliding down waterslides, being my partner in games, riding side by side with me through mud in the mountains. She has lived in three countries, two provinces and two states. She has accomplished things that neither you nor I will ever have the chance.

But what was the most difficult part of being a stroke survivor?

“It’s feeling different from everyone around you. The thought that no one understands,” Lily said.

When I hear her say this, and think about my biggest struggles, I realize something: We aren’t so different.

Even though the younger members of the family are supposed to look up to the elder members, I find myself in the reverse. While I may not know what it’s like to celebrate wearing my first pair of jeans, I know the feeling of being different. I had, and have, such an incredible example of perseverance when my life is flipped upside down or I feel like I’m paralyzed. I have never had the opportunity to live close to her, but whether she has been ten hours away or 7500 miles she has always been able to inspire me and those around her. But how can that even be?

It has a lot to do with the caliber of a person’s spirit and heart. When we see something or someone extraordinary, we can’t help but look, aspire and emulate.

If I could emulate a sliver of courage that I have seen inside of Lily, I would be unstoppable.

But what keeps her going? It’s her yearning for success and normalcy. She finds the desire to persevere through the love of those around her and through the celebration of the little moments.

Perseverance is one of the things that brings all people together. We all love a good underdog story, but it sometimes gets difficult to continue when we are the main character of that narrative. When we emerge on the other side of our struggles, we showcase our strengths and our weaknesses, but we also allow others to see the beauty of our souls. The fake personas that we put on melt away to reveal our truest selves.

Lily perseveres because she lives a life of authenticity. She asks for help. She supports those who are different. She understands the pain of struggle, and uses that fire to courageously make it through each day — something we can all admire and take after.