The Beacon 2019 | Issue 1 2019 | Issue 1 - Page 4

STUDENT SPOTLIGHT GRETCHEN NOVAK BY SEAN AND ANGIE NOVAK Joy is defined as the feeling of great happiness. We call Gretchen our joy ambassador. She is a happy, carefree child of God, who loves to smile and interact with others. She is a beautiful little girl with so much heart for those around her. Gretchen was due April 19th, but on April 17th we learned she was breech and although we attempted to turn her, she was over 9 pounds and was not budging. She was born via c-section on April 24, 2013 at St. Francis Hospital in Tulsa, OK and was visually healthy-looking. Those mo- ments hearing her first cry and seeing her sweet face were perfect. She is a true gift from God. When Gretchen was 7 months old, she went to a vision follow-up. The doctor we saw was not seeing Gretchen respond visually in a typical way. He told us she was legally blind, and encouraged us to reach out to our resources. Our Sooner Start coordinator, Sarah Tronnier, adamantly made clear to us she would bring us to LLH for a tour and that Gretchen needed to be enrolled on the waiting list. Through Little Light House we were reacquainted with our friends’ journey, their son had albinism, and we felt a relief that Gretchen might have the opportunity to develop in a nurturing place where every child has a different starting point and story to tell. We were encouraged that even though we could not predict the future for Gretchen, or what she would be capable of, that Little Light House would support her to become her best self. It seemed clear that whatever resources might help a child grow and thrive are sought out in this place. Gretchen was put on the waiting list on November 2013 at number 149. As we waited patiently and eagerly for Gretchen to get into Little Light House, we also were waiting for more answers about Gretchen’s diagnosis. Our initial struggles were with blindness, low muscle 3 | THE BEACON tone, mobility, as well as eating and drinking difficulties. All the hopes and dreams we had while pregnant had already been altered or put on hold. We at this point had evolved as parents to adjust to what Gretchen needed us to be, in addition to what her older brothers needed. We had become accustomed to doctors and medical professionals being baffled by Gretchen. She was known as a “mystery” baby in the NICU. Every test came back negative with no answers. The hospital geneticist told us he didn’t know how to dictate her case.” That was a big moment, when we realized not every child leaves the hos- pital with answers. We became used to not knowing what we were dealing with, and at some point the the human detail of a diagnosis fell to the wayside and we poured our whole hearts into just caring for her the best we knew how. As we reflect, we realize now how crucial it is not to get hung up emotionally on the impact a diagnosis can bring. Repeatedly, we were told what we might be deal- ing with and all those conclusions were wrong. Had we not continued to trust God with His design and plan, we probably would have succumbed to the false diagnoses we were often given and lost hope; but God has a mighty plan for children like Gretchen. The year 2016 was a year of answered questions and the end to a lot of waiting. On March 22, 2016 Gretchen got the call that she would be eligible to start at LLH in August of that year. Just shortly after this phone call, our geneti- cist recommended another test, a whole sequencing, and more waiting delivered an elusive answer for Gretchen’s diagnosis. We sent off our blood tests on May 5, 2016 and on September 27, 2016, we received a call informing us that Gretchen has a rare genetic disorder called PURA Syndrome. It was God’s timing on the phone call because Gretchen was at therapy and her primary therapist was able to help Angie process the information with genetics on the phone. There was an immediate circle of other parents, relationships we had formed in the hours spent in waiting rooms. Going online immediately opened a whole new sup- port group of other parents of children with PURA syndrome. Sometimes the wait, which is so hard to deal with, is so important in reaching the answers we hope for. The first night of our diagnosis was full of relief, reading the list of symptoms was confirming, and feeling the impact of a “welcome” globally was encouraging that all this time we were not alone in the journey with Gretchen. The very next day, when Angie took Gretchen to Little Light House, we saw so clearly that God was preparing this whole time to support us. Out of only 60+ documented cases worldwide, another student in her class had the same diagnosis. The world is tiny folks! Out of the whole world, Gretchen had been in the same country, state, county, city, school, and classroom with another PURA kiddo and that connection has grown into a family friendship God knew we needed for this journey. Gretchen will have attended Little Light House for three years when she graduates summer of 2019. Amongst her time here we have seen so many milestones and miracles. When she started at age 3, she was not even crawling yet! Gretchen can now crawl and walk, which has transitioned over the years from highly confined to a walker then to a gait trainer to walking sometimes holding someone’s hand or all by herself. She can see, keep eye contact for lon- ger periods, hear, clap, laugh, and smile as a response to interaction with people and her en- vironment. She can feed herself with her hands and often with utensils. She can drink from a cup and from a straw. She plays with others, explores her surroundings, and goes potty on the toilet. Her receptive vocabulary is great. She understands what a talker is and is acquir- ing communication skills on her adaptive device. She can understand how to be around kids, people, and animals like dogs and rabbits. Her whole world has been transformed like a fog slowly lifting. We want anyone who donates to the Little Light House to understand their impact has no end. We will always be thanking Little Light House for the level of care, instruction and therapy Gretchen has received. As parents we planned for Gretchen, but we never could have expected her to be the mystery and special unicorn she is. For that we are financially so grateful for you all and the opportunity she has had to grow and learn at Little Light House. We have had the ability to focus on her medical needs financially, knowing she has her academic and group therapy needs met at school. Many families like ours have multiple children and having access to Little Light House, regardless of income, provides for the whole family to be cared for. We are thankful for the close attention Gretchen has received and we know first-hand that she will be more successful for her next school experience because the impact donors have made in creating an amazing school. Whether you give time or finances or services or supplies, YOU are making life-changing differences in every student AND their families for life! 4 | THE BEACON