Courtesy of Julia Galan
At the age of six, most children are focused on setting such personal milestones as riding a bike, or learning to read and write. But what about completing a triathlon? Thanks to Baltimore-based non-profit organization Athletes Serving Athletes (ASA), Salisbury’s Lily Reckeweg recently did exactly that at the Nanticoke River Swim and Tri on May 3rd! Lily was born with spina bifida, a birth defect characterized by the incomplete development of the spinal cord. As a result, she has no feeling in her feet and legs from mid-calf down. Although Lily can only walk with the aid of crutches, this limitation has not stopped her from flying through life on the wings of determination and hope, with her fiercely supportive family and friends by her side. From 5Ks to half marathons to – most recently – triathlons, “Team Lily”, her fellow athletes and her ASA wingmen are continually breaking down the barriers that are often associated with disabilities.
As ASA area coordinator Jill Fears explained, “…Athletes Serving Athletes works by pairing able-bodied athletes (wingmen) with athletes living with disabilities to compete in main-stream athletic events such as 5ks, 10ks, half-marathons, marathons and triathlons. The goal is for each athlete to finish an event together with his or her wingman and to enjoy the sense of elation and accomplishment that comes from finishing. Ultimately, ASA is all about people. People like Lily, who can feel–even for just a moment–a little less “different” than usual. And people like Bobby Robinson, Lily’s swimming wingman at Nanticoke , that reach outside of themselves to connect with a kindred spirit, enabling them to race like the wind or skim across the water and finish what they never could on their own.” Adds Robinson, “…I have known Lily since she was born. When Jill Fears asked me if I wanted to join ASA and swim with Lily at Nanticoke, I didn’t even have to think about it! Now I want to teach her how to swim on her own so she can do her own triathlon one day. I hope that the good work done by ASA helps make other athletes realize that they, too, can make a difference.”
Out of all of Lily’s “wingmen”, however, none could be bigger fans than her loving parents, Scott and Merry Jo Reckeweg. And that is who we turned towards to hear more about Lily’s story. Below is her tale of adversity and determination, in Scott’s own words.
Lily’s birth: a crash course on spina bifida
Our introduction to spina bifida was instantaneous and unexpected. During Merry Jo’s pregnancy with Lily, all of the ultrasounds and tests came back as normal. When we went to bed on March 14th, 2009 we were expecting another healthy daughter to welcome into the family. Lily was born at 4:44 on the afternoon of March 15th. The day didn’t go as we had planned.
When the nurse first held Lily up, Merry Jo noticed a small protrusion at the base of her back. That’s when they first diagnosed Lily with spina bifida. Later that night she would be transported to Johns Hopkins Hospital in Baltimore for surgery the next day.
The first twenty-four hours were quite a blur. I didn’t know what spina bifida was. I thought it was fatal. Many hours had passed before someone told me she wasn’t going to die. I just remember sitting next to her bed and keeping my hand on her so she wouldn’t feel alone.
I was woken up at 6 a.m the next morning. The surgeon, Dr. Ahn, discussed her upcoming procedure. Honestly, I didn’t understand much of what he was talking about. Here I was, alone and sleep deprived, having to trust a complete stranger with the life of my precious little Lily. I signed the authorizations, and she was taken for surgery a few hours later. I can still vividly remember the look of her tiny body on this big bed, being wheeled to an area where I could not go. I wanted to protect her and watch over her. Instead, I sat powerless in a room filled with orange, plastic chairs.
Then, good things began to happen. Lily’s surgery went well. Additionally, Merry Jo was released from the hospital. She and her mother were able to join us at Hopkins while Lily was still in surgery and be there when she was taken to the intensive care unit.
Over the course of the next ten days, we got a crash course on how spina bifida would affect Lily and how to care for her unique needs. It was both scary and reassuring. It was scary because we didn’t know if we would be able to give her the help she would need. It was also reassuring because someone was giving us a template we could use to be successful, as well as answers to basic questions.
Coping with the challenges
Merry Jo and I handled everything quite differently. Merry Jo had to deal with a sense of helplessness. She faced what seemed to be an intimidating list of questions. How did this happen to her? How do we complete the most basic of tasks in caring for our daughter? What can we expect for her as she grows? Everyone said we had to wait a few years to see. We couldn’t even look at others with spina bifida to know what to expect because it affects everyone so differently.
I never asked why Lily was born with this condition – that was irrelevant to me. All that mattered was that this was our reality. Our daughter would not face this by herself. She was born into a team, Team Reck! We stand by one another. I know that God had a plan for Lily. No loving parent desires for their child to be born with a disability, but I also didn’t foresee how God would use her to touch so many people.
Our greatest challenge is, of course, mobility. Lily has no feeling in her legs and feet from about mid-calf down. However, she is able to walk with the aid of crutches and braces. It takes us longer to do things, whether walking from place to place or getting dressed in the morning, but we have learned to simply adjust. Lily is aware that she isn’t able to do everything that other children can do. She would love to run, climb trees, do ballet and ride a bike just like everyone else. It can be tough for a six-year-old to understand and handle this. We talk about this with her, however. We don’t hide from it. We have always said that we want to acknowledge everything for what it is, but we won’t use those limitations to hold us back or make excuses. Tears are often shed, but Lily has an inner strength that sees her through.
Going forward, it is difficult to predict what the challenges will be for Lily. Merry Jo and I have decided that we’re not going to assign a ceiling to what Lily will be able to accomplish. We don’t want to set the bar lower than what she has the potential to do. We try things. Sometimes we fail. Sometimes that means we’ve hit the ceiling with that particular thing. Sometimes it means we need to try again and learn from the past.
Lily Reckeweg: An Inspiration to others
In public, Lily is a shy, reserved young lady. She’s not one to start up a conversation with someone that she doesn’t know or even make eye contact with them when she’s talking to them. That is, unless someone is holding a baby. She has been known to walk up to complete strangers and ask if she can hold their baby. You’d be surprised how many people say yes.
Her demeanor changes once she gets comfortable with a person. She has a hearty laugh that is infectious. She loves to do things with someone else, whether it is with us or with her older sister, Emma, or younger brothers, Scotty and Gideon. It doesn’t necessarily matter what that activity is, just that you’re doing it together. She loves to color, swim, help me cook or Merry Jo bake. She also really enjoys her horseback riding lessons. I am especially impressed with how quickly she picked up the basics of riding. She loves horses. It’s an interest of hers in which she will be able to excel.
I don’t think Lily is aware of her effect on others yet. I can’t tell you the number of people who have expressed how much she inspires them. She just goes about things in her normal fashion, and people seem to gain true inspiration from what she’s able to accomplish. When she flashes that big smile, you just can’t help but smile with her.
Athletes Serving Athletes: An Introduction
We were first approached about being part of Athletes Serving Athletes by Jill Fears, who co-organizes ASA events on the Eastern Shore of Maryland, together with Jaime Toner. Jill asked if her daughter Tori could run the Beach 5K with Lily as a part of Team Danny. Danny was Jill’s son and her first athlete as a wingwoman for ASA. Sadly, Danny had left this earth to be with God. Team Danny was running in his memory. We thought it was a great opportunity for Lily, and we wanted to show our support for Jill and her family, so we ended up having our whole family participate in the race!
ASA is a wonderful organization that empowers individuals with disabilities to train and compete in mainstream running and triathlon events. They provide wingmen to assist disabled athletes in training for and completing the competition. And they do an amazing job. Jill and Jaime are very enthusiastic and willing to do whatever it takes to see everyone enjoy themselves and succeed. We couldn’t ask for better people to oversee this organization. These events open up a whole new world for the athletes that are served by ASA, a world that would otherwise be difficult, or even impossible, for them to be involved in.
Lily enjoys being a part of ASA because she is a social girl. She’s quiet and shy, but loves when others engage her and take notice. The wingmen do just that and more. They make her feel special and help her to realize the value of being who God created her to be. We all have disabilities; it’s just that some are easier to see. Being a part of ASA allows Lily to see that she is just as normal as you or I.
Additionally, ASA is helping Lily – and us, for that matter – to break barriers. If someone told me that she would compete in a triathlon when she was first born, I don’t think I would have believed them. I would have been too afraid to get my hopes up. Well, she just completed the Nanticoke River Swim & Tri on May 3rd. It was amazing to see her cross that finish line. She loves getting out of the runner towards the end and finishing the race on her own and the triathlon was no exception. I cannot describe the depth of joy and pride that I felt for her at that moment – and that I feel after every race.
Lily’s wingmen at the Nanticoke Tri
Lily’s team at the Nanticoke River Swim & Tri was made up of Bobby Robinson, Jill Fears and Dave Moreno. We’ve known Bobby and his family for many years. We first met them at church when it was just Merry Jo and I. He took to Lily right from the start. They’ve always had a special bond. To say the least, they are buddies. Bobby’s goal is to teach her to swim on her own. He is investing his time beyond ASA to give her something that will provide her with a freedom she has never known. That’s love.
We also met Jill and her family at church. Jill is probably Lily’s biggest cheerleader apart from Merry Jo and me. If you attend any of the races, you will definitely hear Jill’s voice above the others urging Lily to finish the race strong.
We just recently met Dave. He joined Lily’s team when she decided to do the triathlon. He is great with her. After he finished the biking leg with Lily at Nanticoke, he decided to join Jill and Lily for the run, too. He has blended seamlessly into the team, and you can see his affections for her are as genuine as Bobby and Jill’s.
Looking to the future
We try to fit in ASA events whenever we can. There are more to choose from than we are able to compete in, but it’s definitely something that Lily wants to continue to do. We’ve actually spoken with Jill to look into ways that Lily can be more independent in the races. She would still have her wingmen, but she would be able to accomplish the events under more of her own power. Our next race is scheduled for June 14th, where Lily will be completing a ½ marathon at them Eagleman in Cambridge.
How YOU can help Athletes Serving Athletes
ASA can always use more volunteer wingmen. I haven’t spoken to one wingman that doesn’t love what they do. It’s definitely a worthwhile investment of a person’s time. As much as they give to the athletes, the return is even greater. Additionally, we could use donations for equipment. Some of the equipment we need is specialized and expensive, and financial support is crucial to keeping programs like ASA running. Any type of support is very much appreciated!
Please visit the ASA website to learn more.
Thanks to Lily and Scott for their time in sharing a truly inspirational story! We wish the Reckeweg family all the best in their future endeavors.
About Julia Galan
Julia Galan is a lifelong competitive swimmer and a USA Swimming and U.S. Masters Swimming coach. Julia’s passion for the sport, for coaching and for writing led to the creation of Swimspire, a coaching and swimming inspiration source geared towards athletes of all levels and goals.
A real fighter and a real winner of life ! She must be an example for all us !!!!