The Arrow Spring 2012 : Page 4

HANDS BROUGHT TOGETHER THEIR FAMILIES AND PI PHI SISTERS. FIVE PI PHIS REFLECT ON HOW A CHILD WITH SPECIAL NEEDS ALL IN 4 THE ARROW | SPRING 2012

All Hands In

Larsen had a gift: she truly and deeply touched people. TAMARA GREMILLION, Mississippi Alpha I always knew I wanted to be a mother — it was the one thing I had wanted my whole life. My husband and I had gone through in vitro fertilization to get pregnant, and I was able to get pregnant on the first attempt. At 39 weeks, I had to undergo an emergency C-section because our baby was in fetal distress. Later, in recovery, my husband told me we needed to decide on a name because the doctors weren’t sure our daughter was going to survive. I was devastated. In the days that followed, our daughter, Larsen Grace, underwent open-heart surgery and numerous tests, until the doctors determined she had Alagille Syndrome, a rare genetic disorder affecting her heart, liver and pulmonary arteries.We were told she might survive a year, two if we were lucky. Feeding tubes, multiple medications, prescription vitamins and high-calorie formula became the daily routine. Multiple trips to Vanderbilt Children’s Hospital became the norm for ultrasounds of her heart, monthly blood draws to check her liver and treatment for any minor illness she encountered, such as a cold. It was the most frustrating disease, because remedies that help a healthy person would end up damaging her liver further. When we were in public, people would stare, and many stopped to comment on Larsen’s beauty.However, I began to realize some people were staring because of her jaundice. I tried to explain her disease, but eventually stopped because the questions from strangers became too intrusive and painful. I was most surprised by the comments from doctors, including one who said he was “coming to see the yellow baby.” I hurt for my daughter.As Larsen got older, how would she understand people would potentially exclude her based on her appearance? Larsen had a gift: she truly and deeply touched people. Around her second birthday, Larsen fell out of her bed and underwent emergency brain surgery.Shortly after, as several nurses were transporting her, she suddenly thanked them and told them she loved them. How is it possible for a 2-year-old to have that much grace and love? My Pi Phi sisters from college and the Nashville, Tennessee, Alumnae Club provided amazing support, from organizing prayer chains to bringing us dinner — even when there wasn’t some kind of crisis. I am eternally grateful to my Pi Phi sisters.The bonds really do last a lifetime and through all different seasons of life. Sadly, Larsen passed away in January 2011 at age 3. Having a special needs child is emotionally, physically and financially draining, but it is also the most rewarding experience. We drew strength and courage from Larsen, we learned from her and we developed lasting friendships with her physicians, nurses and speech and physical therapists. Every day we try to embrace life and “live like Larsen.” Ellis is like any other child. We just have to add a few extra steps into our daily routine to make sure she stays healthy. KRISTINA CALLAN QUESADA, Arizona Alpha My husband and I were blessed with our beautiful daughter, Ellis Rose, on October 25, 2010. It has now become common practice for babies to go through a newborn screening to test for genetic illnesses.To our surprise, at 10 days old, Ellis was diagnosed with Cystic Fibrosis. In the United States, approximately 30,000 people are affected by Cystic Fibrosis (also known as CF) — and Ellis happens to be one of them. In people with CF, the body produces unusually thick, sticky mucus clogging the lungs and may cause digestive problems. Today, the average age expectancy is 37 years old. There are many challenges when it comes to raising an infant with CF. In order to prevent buildup in Ellis’ lungs, she goes through 20 minutes of physical therapy twice a day to “pound” the mucus out of her system. Also, every time Ellis eats, we break up pills into her food to help her pancreas absorb the nutrients of what she is eating. Ellis takes around 15 to 20 pills every day. At first, it was a struggle to get used to this new way of life, but after a couple of months, it became our norm. To us, Ellis is like any other child. We just have to add a few extra steps into our daily routine to make sure she stays healthy. My Pi Phi sisters have been overwhelmingly supportive since Ellis was diagnosed. These amazing women reached out to me with phone calls, hand-written letters, emails and Facebook messages with encouraging words for my family and me. They also expressed how they want to be involved in raising funds for the Cystic Fibrosis Foundation.Although many of us no longer live in the same city, my sisters donated their time and energy to help my family raise funds for the foundation’s annual walk, Great Strides.Last year, Team Ellis Rose brought in more than $13,000! My Pi Phi sisters have also been there to celebrate the good times, whether it is a sweet gift in the mail for Ellis’ first birthday or celebrating CF research advancements with phone calls cheering on Team Ellis Rose. It is so wonderful to know my sisters are always thinking about Ellis. Having them show their support during the good times and bad is truly irreplaceable. Raising a child with special needs reminds me to always count my blessings and appreciate what I have in life. Every day is a gift, and it is important to be thankful for the time we all have together. Ellis has opened my eyes to a world where giving, caring and enjoying every moment are all that really matter. LESLIE DUVALL KANTOR, Washington Gamma When our daughter, Taylor, was born, the pediatrician told us there might be something wrong, as it appeared she had low muscle tone.After exhaustive tests, we discovered Taylor had a rare chromosome disorder — only 60 known cases in the world — and no one knew her future. How could that be? My husband, David, and I were both only 24 years old. David was a health nut who did not eat sugar, drink caffeine or alcohol and went to the gym five days a week. I followed every step of the doctor’s advice, and I ate what I was recommended. Two happy-go-lucky college sweethearts who never faced a serious challenge were now forced to be ferocious advocates for their daughter. After many years of struggling with Taylor’s health, we were introduced to a new physician. Upon examining Taylor, he explained she would continue to get pneumonia while living in the Pacific Northwest and build up scar tissue until nothing could be done. The solution? He told us to move to the desert. I called the realtor on the car ride home. We moved our family to California and found dry air and sunshine were the best things for Taylor’s health — and weren’t too bad for the rest of us, either. Through the trials, tears and frustrations, we learned a lot about life. When Taylor was 4 years old, we started a charity called “Bids for Kids” to benefit the children’s therapy department at the Mary Bridge Children’s Hospital in Tacoma, Washington. “Bids for Kids” has raised more than $1 million dollars and is now led by an amazing group of women, The Jean Cunningham Orthopedic Guild. Over the years, many friends and family have supported us. My best friend from college and Pi Phi sister, Washington Gamma MARYLOU HILL FERRY, has been with us every step of the journey. Many of my other Pi Phi sisters live in different states, but I continue to keep in touch and inform them of Taylor’s health. This winter, our family — my husband and our three other daughters, California Epsilon TATUM KANTOR, Jayda and Tiffany — and many of our friends celebrated Taylor’s 24th birthday. It’s amazing to discover the things you learn from a child who cannot walk or speak. Taylor has been our teacher, our comfort, our joy and our sorrow. And, most of all, we have learned to trust our instincts when it comes to raising a daughter with special needs. There is no handbook, and each parent must forge his or her own path.To every parent who is given one of these very special people, you do have the strength and the knowledge to do what’s right. People often say we’re amazing for what we do with Taylor. We simply do what needs to be done, and if faced with a similar situation, you could too. It’s amazing to discover the things you learn from a child who cannot walk or speak. ELIZABETH BOSCHINI, Virginia Eta I am a speech-language pathologist, and I am passionate about giving children with hearing loss the chance to listen and talk. I have written two children’s books featuring children with hearing loss who listen and talk with the help of cochlear implants. My experiences as a Pi Phi play a huge part of what I do today. The Fraternity’s commitment to literacy is one of the reasons I decided to pledge Pi Phi, and every day I have the privilege of helping children with hearing loss experience the world through books. I am on a mission to show the world anything is possible for children who are deaf or hard of hearing. When my books were published, my Virginia Eta sisters were among the first to support me, sending words of love from across the country — and even across the globe! The books, “Ellie’s Ears” and “Happy Birthday to My Ears,” help give children with hearing loss positive role models in literature, something that is sorely lacking in mainstream children’s books. The book’s illustrator, Rachel Chaikof (herself a bilateral cochlear implant user), and I have committed to donating all proceeds from the books to nonprofits supporting children with disabilities. My work with children with hearing loss has also taken me around the world, helping to lobby for universal newborn hearing screening in Costa Rica and train teachers of the deaf in the Dominican Republic. Most recently, I have been involved in lobbying efforts in Indiana leading to the creation of an unbiased resource center for children with hearing loss and their parents. Pi Beta Phi gave me friendship, self-confidence and leadership opportunities at a crucial point in my life.Through my website, www.cochlearimplantonline.com, and my books, I reach people from around the world each month with a message of hope, support and possibilities for children with hearing loss. I am on a mission to show the world anything is possible for children who are deaf or hard of hearing. We focus on his quality of life and what he can achieve: Kent has an amazing memory, incredible organizational skills and a wonderful sense of humor. BETH ALDERTON ERNSBERGER, Indiana Gamma Within minutes of the birth of my brother, Robert Kent Alderton, the doctors announced to my parents he had been born with Down syndrome: a congenital condition, caused by the presence of an extra chromosome in his DNA, characterized by moderate to severe mental retardation, upward slanting eyes, a broad short skull and broad hands with short fingers. I remember my dad waking me up to tell me Kent had been born, and he had Down syndrome. At 5 years old, I had no idea what that meant. I just remember thinking what a beautiful baby my brother was. He was absolutely adorable in my eyes. The impact of his diagnosis wouldn’t come until a few years later when I volunteered at a Special Olympics track meet. That day, I came to realize the extra chromosome Kent had would impact his entire life. My mother enrolled Kent in educational and therapeutic sessions from the time he was 8 weeks old. Because he started therapy at such a young age, Kent became the first child with Down syndrome mainstreamed into a kindergarten class in South Bend, Indiana, when he was just 5 years old. For me, the heart-wrenching part of Kent’s disability is that he is keenly aware of it. He is too bright to push a broom all day, but using a calculator or a keyboard, or reading a book, are above his ability level. That’s what I call being stuck between a rock and a hard place. We focus on his quality of life and what he can achieve: Kent has an amazing memory, incredible organizational skills and a wonderful sense of humor. He does a great Michael Jackson impersonation and is always the first on the dance floor and the last one to leave. He’s given our family opportunities we otherwise would not have had, and we’ve met so many amazing people. In college, all my Pi Phi sisters knew Kent and loved him.Some women even joined me at Special Olympics events.And now, though we don’t see each other frequently, my Pi Phi sisters still play a significant role in my life. When we are together, time melts away. There is a love, admiration and bond that come from membership in Pi Phi, which is unlike any other experience. My mother died a few years ago, and Kent has since come to live with my husband, our three children and me. There are learning curves and territory wars we have to get through, like any family. But despite the full house, I am thankful for Kent’s presence in my children’s lives. It’s my hope he will help teach them the importance of acceptance.

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