Hi, my name is Leah, and this is my story about the journey I have taken with my daughter Sydney. I had a normal pregnancy until 28 weeks when the decision was made by specialist to send me to Vanderbilt for bedrest and monitoring due to polyhydramnios until it was safe for the birth. She was born at 33 ½ weeks gestation. Sydney was not breathing and with resuscitation, she was taken immediately to the NICU where she was placed on a vent. The doctors tried numerous times to take her off life support, but each attempt failed. On Christmas eve morning, a doctor discovered a boney blockage in her nose -Bilateral Choanal Atresia, and she was given the diagnosis of CHARGE Syndrome. CHARGE is a recognizable genetic syndrome with known pattern of features and often involves extensive medical and physical difficulties such as balance, vision and hearing loss which differ from child to child. Sydney had numerous surgeries and the doctors gave us a gloomy picture for her future. Her nurses fought hard to keep her alive, and she began to thrive after a tracheostomy. Finally – after 3 months in the NICU, Sydney was allowed to come home with us.
Our home was filled with equipment to take care of Sydney and I quit my job to stay home with her. She had to be suctioned several times a night, so very little sleep was happening for us. Pneumonia and fluid in her lungs led to several hospitalizations. But despite everything, Sydney continued to thrive. We noticed her moving her mouth trying to make sounds and using the startled reflex every time her brother came near her in his cowboy boots or rocked in his chair. This gave us hope.
I was so grateful to a social worker at Vanderbilt who made sure we had a medical card for Sydney as well as other resources to contact before we left the hospital. She encouraged us, gave me the will to become a proactive mother – constantly asking questions, teaching me to become the advocate Sydney would need to grow and thrive. That social worker is the reason I went back to college to enter that profession. I wanted to give families the same supports which she modeled for me.
We contacted the Kentucky Early Intervention System – First Steps and before we knew it, we had someone in our home almost constantly. Between speech (SLP), occupational therapy (OT), physical therapy (PT), and an amazing developmental interventionist (DI), Sydney was getting the help she needed. Those First Steps folks became family to us. These team members developed an Individual Family Service Plan (IFSP) and we were able to share what our goals were for Sydney. We stayed busy between First Steps appointments and Cincinnati Children’s Hospital. However, the one KY agency that we did not know about was the Commission for Children with Special Health Care Needs (CCSHCN). I had no idea at the time they could follow Sydney throughout her school years. It could have been the congruent interagency partner needed to keep track of what had been done and what still needed to be done.
Before we knew it, the time came for Sydney to transition into preschool. Everything went so smooth between First Steps, the preschool program and us. Each team member provided their expertise to develop Sydney’s Individual Education Program (IEP). The implementers had specific roles and responsibilities and each goal was documented to assure Sydney was successful. An instructional assistant and a nurse were hired to transport her each day. Kentucky School for the Deaf (KSD) had a satellite program in the area, and Sydney was able to be there for 5 years. Everything was done to assure us that all the capable staff would take good care of Sydney. At the end of the day, that is what all parents are looking for when they let their child go to school for the first time.
The elementary years for Sydney brought about lots of change. She was placed in a special education classroom for her elementary years. She made friends with 10 students from all over the county who also had hearing impairments. Those were wonderful times. I would fix her hair in double pigtails, and she would bebop off to school. One of her favorite things was watching the “Wiggles” and bebopping with them during their program. One of the sweetest times was when she attended a Wiggles Concert and met them. She has always loved music, whether it was in the car when she was little, and if she was not hearing any – that did not stop her. Sydney could move to her own music! It has been her lifelong passion. The early years had allowed us to be active participants in Sydney’s education. Middle to high school was very different for us. Sydney had a difficult time with the setting and developed lots of problems. I worked at the middle school and that made it very hard to advocate for my child with my colleagues. I recognized that Sydney was not getting what she needed to be successful, and the Kentucky DeafBlind Project helped to support the process. We had many ARC meetings, and nothing changed. We filed a complaint with the KY Department of Education (KDE) and the school district was cited for non-compliance. I left my job with the school district after 8 years. The state and local professionals worked to correct the deficient. It was one of the most difficult times in all our lives. I cannot explain how uncomfortable it is for parents to advocate for their child and maintain a supportive relationship with the school. We had good times and bad times while advocating for Sydney.
During her junior year, Sydney ran track. During her last race, we saw the sweetest thing happen. Her teammates were at the end to cheer for her. The team celebrated her and her “not give up” spirit.
Sydney was a 2020 high school graduate with diploma. She always did well in school and took an education very seriously. She did her homework because she knew an education was important. Since it was the “year of the pandemic” there was not an actual graduation, but the school decorated and had a drive-by parade for the graduation seniors. It was sad but such treasured moments. We all tried to make the seniors feel special.
One of the best memories is when our 8th grade Sydney went to a concert with her favorite singer Kesha. She had tickets on the front row! During the concert, Sydney was standing and moving to the music. Kesha spotted her and waved to her. About 2 songs later when Kesha waved to Sydney. The bodyguard came over and told us to wait about 15 minutes after the concert and he would return and take us backstage to meet Kesha – we could hardly believe it! Back we went, and it was wonderful. Kesha met us with not makeup on, in regular clothes just like a real person! She gave her so many things including a T-shirt. We tried to stay back and watch the interaction. When they were finished, Kesha came back to us and hugged me, telling me what an amazing parent I had to be. She let us know that it meant so much to her to have Sydney there and that she had been bullied in high school and it was a rough time for her and her family. That led Keshia to stand firm on “NO BULLING ZONE” in hopes of making a difference for other girls.
The Kentucky DeafBlind Project (KDBP) became involved with Sydney early on. Diane attended the Admission and Release Committee (ARC) meetings, and Donna and Kim provided training and moral support. One of them usually observed for a day and made recommendations. This was so helpful to teachers and our family. They have always helped me advocate for Sydney’s needs.
The gift Sydney has given me is DETERMINATION. At 43 years old, I will be graduating college and have a job with a school district as a social worker. My summer will be spent locating resources for families and I hope that I can be the person a parent knows is safe to lean on during stressful times.
Sydney had planned to go to Helen Keller Institute during Covid-19. We hired a special education student to work with Sydney on social skills during that time. Next year she will go to the Helen Keller Center. Despite the obstacles, she is so smart and a true WARRIOR– the wonderful strong-willed child. She has pushed us as her family to do better and do more.