My grandfather was a rock for many people, and his contributions to his family, his businesses, and his community are inspiring. In looking over his lifelong accomplishments, it is hard to fathom that so many achievements came from one man with a soft voice and a big heart. But my Paw Paw was a doer, and he never let a free moment go wasted. Dressed in his blue and white striped collared shirt, he would seize the day, finding pleasure in tackling problems and discovering new ways to get a job done. Both his head and his heart were fully committed to this life, and that force could move mountains.
My grandparents were high school sweethearts, but they weren’t your typical fling. While my grandpa was voted “biggest flirt” and often found opportunities outside the school walls calling his name, my grandma was class valedictorian and voted “most friendly”. In my grandma’s yearbook, his message was simple: “to my best and sweetest girl, and pretty soon my wife.” And so following graduation they married, and my grandpa then spent several years on an Air Force base out west. After they moved back to Florida, it didn’t take long to reach a full house. When the twins were born, the Thompson family had 4 children under the age of 5 years old. From old pictures, it’s very clear that family was important and the Thompson’s went on many adventures. Though the generations and over the years, the message has stayed the same - a strong family is perhaps the greatest gift in life. As a father, a grandfather, and a great-grandfather, Rodney always took the time to be there for his family.
From the beginning of his life, my grandfather was always innovative and entrepreneurial. He was a paper boy, a watermelon peddler, and a bait shop manager in his younger years. To change up the pace, he started racing speed boats in the 1960’s. He took the light-weight fiberglass construction utilized in the catamaran style race boats and applied it to commercial fishing boats, first constructing the T-craft, then the Thompson Trawler, and culminating his boat-building career with the world’s largest fiberglass trawler at 90’. Stepping into a new industry, my grandpa next tried his hand at the restaurant industry, starting with Sandpoint Inn and later Dixie Crossroads. He figured out how to efficiently split rock shrimp, and featured the new delicacy in his restaurants. He operated a large seafood processing facility to support the restaurant, Cape Canaveral Seafood Company , and opened two public seafood markets called Wild Ocean in Titusville and Port Canaveral. His impressive career as an entrepreneur in the fishing, boating, and seafood industry spanned over 60 years, and touched the lives of so many.
Not only was my grandpa a business man and a family man, but he also had a huge heart and always thought to help others in need. Every thanksgiving, he opened his restaurant up to hundreds of people that had no other place to go and provided a free hot meal. I remember one summer we had significant wildfires in central Florida, and he brought food and drinks to all the firefighters every day that they worked. He built the wooden track for the first Ducksville Derby at the Indian River Festival. Through the years, he sponsored various fundraisers for the local high school choir groups, tennis teams, grad nights, and teacher of the year celebrations. He also sponsored funding for several individuals in the community trying to recover from illness. He raised money for the National Park Service to purchase two ATVs for the rangers at Playalinda to monitor nesting sea turtles. The park superintendent said, “When you’re in the trenches and need help, Rodney is the man who always comes forward.”
My grandpa was a man that was there for everyone, and I have heard many say he was like a father to them. We are all so lucky to have been blessed with his love. I’d now like to share some of my favorite personal memories of my grandfather. I remember trips to Disney World with the grandkids in the big blue van with the seat laid back like a bed so that we could all crash on the way home. My grandpa loved the mermaid show at Weeki Wachee, and I remember sitting on his shoulders to get the best view of the show. He took his family to New Smyrna Beach every summer, and while the grandkids would play on the beach, he would slip back into town and work all day. He would sneak back in at the end of the day as the sun was setting, and then take us ghost crab hunting on the beach with flashlights.
He also allowed me to help with his businesses. He named a boat after Cherisse and I (the Cherissa) and let us toddlers help christen the boat. When I was 7 years old, I started helping around the restaurant with rolling silverware, cleaning the pond, cleaning shrimp, and wrapping potatoes in foil. If I remember correctly, I believe the going rate for potatoes was $2 per box, so I learned young that if I worked fast I had the potential to buy quite a bit of gum balls. I started working the drive-thru window with Karen and Judy full time during the summers when I was 14, and saved my money for 3 summers to buy my first car. My grandpa reminded me I needed money left over to pay for insurance and gas, so I could only spend about 2/3rd of what I earned. That landed me an ’88 Nissan Sentra stick shift, which had about 75 horsepower and actually decelerated while driving over the causeway. My grandpa was the one that taught me how to drive it. After I graduated from high school, I decided to pursue architecture at the University of Florida and my grandpa was my biggest supporter. I’m sure he wanted me to stay in town and continue working in the family business, but he never once made me feel that way. He was thrilled at the idea that I could “hang out my shingle” and run my own business one day. I came home to work at the restaurant the summer after my freshman year, and that was where I met my husband, Barry. I was a waitress and he was a busboy, 15 years ago. Every summer I would come home from college and work at Dixie Crossroads or Wild Ocean. My last summer of grad school, I stayed at my grandparents’ house for the summer while working in Titusville and it was honestly the best summer of my life. I loved having the opportunity to visit with my grandparents every day and I felt like I had them all to myself.
I learned so much from my grandpa, and his example shaped my outlook on life. I have learned from him that if there’s a will, there’s a way. It doesn’t matter the hand you are dealt or the tools that you have. You can come from nothing and have everything if you have determination and drive. In 2nd grade, I remember a class assignment where we were to characterize a person of importance with one word. I chose my grandpa, and I have to admit that my mom helped me with this one, but the word I chose was perseverance. Here we are 30 years later and I can’t think of a better word to characterize my grandpa. He never gave up, and a failure never slowed him down. He kept trying until he got it right. The last years of my grandpa’s life must have been difficult for him, as his body slowed him down and he was no longer able to be a doer. I believe that he is now reunited with his mom and dad, his son Tim, and Mr Cat and Miss Kitty. I can see him in his blue and white striped collared shirt, walking again, and getting back to work on the next project. It is a beautiful picture.
My son Curren has magical blue eyes and beautiful red hair, which happens to be the rarest eye and hair color combination in the world. But making him even more rare is the genetic disorder he has been diagnosed with. While the numbers have grown since last year's diagnosis, he is currently only one of twelve know in the world with a disease-causing mutation in a gene called HIVEP2. There are not many resources available at this time, and the current management approach is to treat the symptoms, which often include intellectual disability, autism, seizures, sleep disorders, vision problems, speech delays, movement disorders, and developmental regressions.
It has now been a year since Curren's diagnosis - a year filled with soaring highs and defeating lows. Managing a life-altering diagnosis has been overwhelming, and has brought about some striking juxtapositions. I have somehow become both stronger and more fragile at the same time. We have developed an amazing support network of therapists, teachers, and case managers, and yet somehow we feel increasingly isolated. I find myself outwardly expressing a steadfast optimism, but internally I have felt unease since the day of the diagnosis and every day since. I question what more can I do with the waking hours I have, and when will it be too late to make a difference? It is a heavy weight to carry, and the uncertainty of not knowing whether there may be a potential treatment that would improve my son's quality of life if ever available is heart crushing.
As we have navigated this past year, I keep searching for places where there are more children like Curren, and surprisingly, we keep coming up short. At the early intervention center, Curren was the only child in the program who couldn't walk. He is one of the only non-verbal children in his new special needs preschool, and there are no other children in wheelchairs. Some of the specialists we see just toss their hands up with no recommendations and say "see you again in 6 months". Not only is Curren developmentally delayed, but his physical appearance and size is much more like that of a young toddler, so strangers usually refer to him as a baby and are flabbergasted if I tell them he is three. And that leads to perhaps my biggest worry. Curren is a very social child, and he adores interaction with others. He works so diligently to get people's attention and to get them to smile and wave to him. It incredibly charming right now, because he is perceived as a bubbly little baby with a contagious grin. But how will the world treat him when he is 7, 16, or 30 years old and no longer a cute small child? Curren has differences in his brain which cause him to take him longer to react and respond to people, but his intent is there. Will he be left in the dust in this world as our society becomes more impatient and focused on instant gratification?
Through the challenges, a new perspective arises, and it is clear that being a caretaker and an advocate for a child with special needs brings life to a whole new level of richness and beautiful complexity. The emotion that is felt when hearing your child's sweet voice say "mama" after 2 years of trying is indescribable. Watching your son break down in frustration every day for weeks upon weeks makes that giant belly laugh seem like the bees knees. The dark does not destroy the light, rather it defines it. Life is enriched by difficulty, and I am honored to be chosen for this journey.
Tomorrow my blog will be 1 year old, how exciting is that? I started this blog searching for answers, and ironically we received a diagnosis within the first month. But moving from the past and on to the present - we have been involved in so many new and amazing things over the past 6 weeks. It's hard to believe we have jam packed all this excitement in such a short period of time. Curren went to New York to see our new incredible doctor who is actively researching HIVEP2, he was on national television as part of the Beyond the Diagnosis art exhibit, he completed a 3-week intensive therapy program sponsored by the Cove Merchants Association from the Canaveral Mac Attack tournament, he turned 3 years old, and he started an early exceptional learning program at a local public school. We are all pooped, but this is a marathon and not a sprint - so we keep on going!
Our trip to New York was wonderful. We stayed in a small beach town in New Jersey with good friends for a few days, and our friends Ryann and Heather came into town and met us (Ryann has the same diagnosis as Curren). We went into the city for Curren's appointment at New York Presbyterian Children's Hospital, and visited the Guggenheim, the Cooper Hewitt, Central Park, and the Seaglass Carousel at Battery Park. The appointment with Dr Chung and her team was wonderful, and we are working together to plan a virtual family conference for all the families with a HIVEP2 diagnosis.
Once we got home from our trip, we found out that Curren was going to be included in a nationally televised program on a traveling art installation call Beyond the Diagnosis. We are so honored to be included in the collection and to help put a face on rare disease. Curren's portrait was completed just before the program aired, so his painting wasn't included in the segment, but he had a little photo cameo at the introduction to the story. Curren's painting is an incredible watercolor that beautifully captures his essence, and it is possibly one of the kindest gifts anyone could give us! His artist is a very accomplished retired neuroscientist in England. We have also already been contacted by a genetics professor who saw the exhibit, and her students will be doing a project on HIVEP2 and interviewing us! We can't wait to see where Curren's portrait travels and how his painting will raise awareness for HIVEP2 disorder and rare diseases.
Curren had the opportunity to complete a 3-week intensive physical therapy program at Ability Plus using a therasuit compression body orthosis, thanks to the proceeds from the Canaveral Mac Attack and the Cove Merchants Association. He went to therapy from 9:00-12:00 every day for 3 weeks. The therasuit helps to stabilize movement, improves body awareness, provides dynamic correction, and supports weak muscles. When used intensively, it accelerates gross and fine motor skill development. We saw a huge improvement in Curren's mobility, strength, and coordination throughout the program. I feel that he accomplished in 3 weeks what would typically take him 3-4 months. The biggest improvement is that Curren is initiating steps now (with upper body support). His lower body has always been much weaker that his upper body and it wonderful to see those feet starting to work! It wasn't easy to do that much physical therapy every day, and we are so proud of Curren for sticking it out and making it all the way through each day!
Curren also had a birthday last month. We had a sweet puppy party, and there were 4 dogs in attendance. We also went to Animal Kingdom to celebrate.
Since Curren turned three last month, he aged out of Space Coast Early Steps (so sad!) and started an early exceptional learning program at a local public school. He attends school 3 days a week, and will continue to go to Ability Plus for PT, OT, and ST the other 2 days. I have been nervous about this transition for over a year, so you can imagine my relief when we realized his teacher and assistant are so kind and caring and very experienced. Curren will also get PT, OT, and ST at school, as well as adaptive PE, aqua therapy in an indoor heated pool, circle time, and more. We are so excited for Curren to get this much enrichment throughout the week and look forward to watching him learn and grow in this environment!
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I am a mother, architect, wife, and a lover (not a fighter) - with a thirst for knowledge. My journey been recently refocused, as my family navigates through the world of medical and developmental uncertainty in hopes of providing every opportunity for my son to be his personal best in life.