Victoria was diagnosed with Turner Syndrome at birth. It was a complete shock to me because my pregnancy went smoothly. My doctor knew right away what she had, and it was confirmed with a blood test. Fear of the unknown engulfed me. The initial information provided to me from the NICU was extreme worse case scenarios. This was not my baby.
Worry, anxiety and despair continued as I scheduled doctor visits to diagnose and rule out the specific condition of my little princess. I checked and crossed off the list of possible concerns. Becoming her advocate required on the job training. The first issue was her heart. Then her ears. And next her eyes. For the first eight years of her life she had a surgery every year. We frequented doctor’s offices and hospitals. Along with these came a digestive issue for Victoria. For the first five years of her life she vomited almost every day. We tested for everything and visited numerous specialists. The answer after this long battle was she has an allergy to a milk protein for the early years. As she got older we discovered that she could not digest fruit chew snacks or anything gummy. Ironically, the advice came from a pre-school assistant who suggested taking that out of her diet. The little snacks that provided peace during long office visits? But she was cured.
I remember always waiting for the next thing. And then one year, there was no surgery. My head began to clear and my anxiety started to wane. The time between doctor visits grew.
Living with Turner Syndrome (TS) means that when an issue arises, the first question you ask is: “Is it TS related or a ‘normal’ issue that most kids face?” The truth is that it is not black and white. So we navigate the shades of gray. It is important to remember that every child is an individual and unique in her own way. Victoria is my daughter who is quick to offer a smile, a hug and emotional support. I believe that some of it is due to her life experiences. Out of her trials, a tender young lady has emerged.
We are running in the New Jersey Half Marathon and supporting Turner Syndrome Foundation (TSF) for several reasons. TSF holds a dear place in our hearts. They are a huge help to families. They provide resources and support to anyone who comes across TS including caregivers and those in health care. It is a place that you can go to receive up-to-date information and advice. In 1999, when Victoria was diagnosed, the Internet was limited. The information about TS was raw. TSF offers current, applicable information and resources to help families connect and live fulfilling lives. The NJ Marathon Event is a way that we can show others that girls with TS can overcome obstacles, set goals and achieve their dreams.
We are also running in the half-marathon for personal reasons. Several years ago Victoria struggled with her weight. (A lifelong issue for myself as well.) She began to understand that her weight is a reflection on what food she eats and how much she exercises. She spoke with a nutritionist, researched healthy eating and exercising online, and formulated a plan. I am along side to support her and we discuss good and bad choices everyday. We plan out our meals and workouts weekly. We also plan our splurges, treats and rewards. The biggest help has been realizing portion control. She currently has a slice of carrot cake that she has taken two bites of every day for the past few days. She enjoys each bite, is satisfied and returns it to the refrigerator. Taking small steps like eating one slice of pizza instead of two or three aided in her 25 pound weight loss. Now she only eats pizza once a month. Victoria also joined the cross-country team at her school. It is a small school, with a small team, and she is the only girl, but this does not discourage her. Even when she comes in last, she knows that she gave it her best effort.
Several years back, Team TSF Victoria consisted of my father, my older daughter and myself. We joined together to show our support of her condition. A few years ago, Victoria wanted to raise awareness of TS through her Girl Scout Troop. They decided to use this platform to earn their Silver Award. That year Victoria and I ran in the half marathon together. Our journey was slow and painful. We limped through the finish line. The following week her toenails blistered, a common issue for runners. We were referred to a specialist. The specialist told us that girls with TS aren’t suppose to go out for 13.1 miles. They aren’t designed to do so. Victoria has a shortened tendon, which is why she was in so much pain during her first half-marathon, that led to her overly swollen toes and ingrown toenails. No one mentioned this to us before. Victoria has an inner determination. If someone tells her, “You can’t do that because of your limitations,” she finds the strength to prove them wrong. She told me that this was an activity that she wanted to continue doing. We were advised to remove a few toenails to prevent future infections and given stretches to improve mobility. That process was one of her more difficult surgeries and one that she remembers.
Another obstacle Victoria deals with is exercise-induced asthma. This is a challenge every time she runs, especially when it is cold outside. She often feels like she cannot breathe. The obvious advice is to stop running. But Victoria knows that running will strengthen her lungs and overall fitness. So she slows her pace and keeps going.
Running in the NJ Half Marathon provides us with discipline and motivation. This year we don’t want to limp through the finish line. We recall the pain, but we want to have victory and hopefully a better finish time. We are not out there to be the fastest. Our goal is to encourage each other with health and fitness. We are very positive and loving with our setbacks. As we cross the finish line this year we will have tears of joy. We will head over to the TSF Sweets & Treats tent for a cookie and indulge in a slice of pizza that evening. We are Team TSF Victoria. We are strong!
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