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My personal cleft lip & palate journey
This is the story I share when asked at various speaking events within the community. Obviously updating when things change. I want to thank Shriners International and Shriners hospitals for the philanthropy and care in which I have received thus far and moving forward. A special thanks to my plastic surgeon and the staff at Cincinnati Shriners Hospital for Children and locally Dr. William Parris, orthodontist & Dr. Betsy Barcroft, DDS. All I have mentioned make up one out of this world cleft team.
CLCP (cleft lip/cleft palate) is one of the most common birth defects affecting 1 in 500 children born in the USA today. Unless treated it can interfere with feeding, hearing & speech. My family's cleft journey began during a typical 20-week ultrasound. This is how my mom & dad found out that I would be born with a possible cleft lip. They had over to mom now as she knows the history better than I do.
As his mother the very first thing that came to my mind what did I do? How did this happen? From that moment forward after all the emotions ran through us, his father and I, we started our research as to how we would care for him, feed him, etc. Around the 28 week mark, we contacted the local cleft team which we interviewed and asked a TON of questions. Shortly afterward I was put on bed rest due to complications. Fast forward to Sept 12, 2006, I was 35 weeks along and our son, whose nickname is “Blue” decided to make an early grand entrance. We were both scared and had no idea what to do, we had no insurance, no family in the state to lean on (we moved from Savannah, GA to our forever home after my husband was honorably discharged from the Army). Everything happened so fast, big brothers were called at school, we were so not ready but knew this baby needed us as much as we needed him. The same day he was born two doctors from the local cleft team came to the hospital to meet Blue and help us figure out what our next step would be.
How did we get connected with Shriners Hospitals? After leaving the NICU and bringing our cleft cutie “Blue” home. Both my Mother-in-law & Mother suggested we look online for information about Shriners Hospitals. Blue’s Father, was also treated at Shriners Hospital when he was young. To me personally, it seemed way out of reach. I mean why would they want to help us? We had nothing to offer in return. We talked for a couple of hours over travel, the distance, the cost and decided to fill out an application then submit it. Dr. Burruss, a plastic surgeon here in town on the cleft team was very happy to sign the needed paperwork and refer our newborn to the Shriners Hospitals for Children. In less than two month’s time, we were on our way to Cincinnati, OH. Since that time, our son has had a total of 13 surgeries; with his first one at only three months old in 2007 which was a cleft lip repair. Even with all these surgeries we as parents were humbled when told Shriners Hospitals will treat children no matter the family's ability to pay. What a blessing to us at the time. In the future, we know Blues' next surgery will be jaw surgery. The thing about being a cleft parent is you never really know what to expect or how many surgeries there will be along with not knowing when it will all end. We have a Shriners Hospital family that helps us so much along the way. Again, we do not know how many more he may have. All I can tell you is we are ready and know he is always in the best hands, starting with his favorite drivers from our local Shrine Center.
Today: Blue is a typical 13-year-old boy who argues with his oldest siblings while also being his best friends. So many people in the community refer to him as Blue, which is a nickname/clown name that he earned. This name was given to him by “Poppy” the shrine clown, shortly after his red hair started coming in. Being vibrant ginger, it just makes sense to be called Blue. Since then the nickname is used by all, including teachers, family members and more. Things Blue loves Memphis Redbirds baseball, Kentucky basketball, college football, and motorcycles. He collects poker chips and shrine center pins. He was adopted as a Law Dog pup in Sept. 2016 and as a family, we support Shriners Hospitals for, anyway we can. With that being said, Blue is a proud member of West TN, Tipton Chapter DeMolay. Blue enjoyed many sports Shriners Hospital story. He absolutely loves to read anything and remembers everything, still plays with his dad's GI Joes, history buff, comic reader and numbers guy, oh and of course is a huge gamer. Maintains as a straight-A student, belongs to the Junior Beta Club, comic club and enjoys sharing his journey with all his friends and teachers. His story is published in two books, also has a Facebook fan page under the same name as this website. Where he is able to connect with families all over the world. Thanks to his website we are able to donate cleft care packages to kids going through surgeries. Back in March 2017, Blue was chosen to participate in Portrait of the Soul through Shriners Hospital Cincinnati. He was one of six patients chosen to have his portrait painted by a well-known artist, which is now hanging by the OR of Shriners Hospital for children Cincinnati on display. Blue is such a positive young man, an old soul. When he is asked to share his story with groups; he never hesitates to say a big YES. Like our other three children, I tell him he can do anything he sets his mind too. He is one amazing young man to his father & me, as he doesn’t let anything hold him back.
~ The family
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