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Fearfully & Downright Wonderfully Made: Jacob's Story

Posted by Morgan Graning on 25, Oct 2019

Screen Shot 2019-10-25 at 10.55.19 AMEvery single day, life has the undeniable capability to throw each of us a curveball we could have never predicted. When the curveballs come - and they will - it's completely up to us how we receive them, and more importantly, how we react to them. Do we wish them away and pretend they never happened? Or, do we grab our baseball glove, try our best to catch without stumbling, and turn them into home runs?

For Nancy Parsons, CFM's VP of Claims, one of her biggest and best curveballs came in the form of her son, Jacob. Jacob was born with Down Syndrome and was later diagnosed with Autism as well. However, Nancy, her husband, Dale, and Jacob's two older siblings, Katy and Hunter, don't see either of his diagnoses as a hindrance to his life or theirs. While he may be permanently labeled with medical conditions not well-understood or overwhelmingly accepted by some of the public, Jacob's life - in the eyes of his family, his team - is a winning game.

In recognition of Down Syndrome Awareness Month, we are honored to share Jacob's story from the perspective of the one person who knows him best - Mom.

Screen Shot 2019-10-25 at 9.15.17 AMEach family has their own version of 'normal' everyday life and for the Parsons, 'normal' is cave exploration (because the Show-Me-State has so many to offer), old car shows, antique pickin', and binge-watching classics like Star Wars, Lord of the Rings, and Indiana Jones. Back to cave exploration - Nancy, Dale, and their kids have visited almost every cave open to the public in Missouri and plan on catching the last three before the end of 2020. Impressive, right? Maintaining the right balance of memorable adventures and much-needed downtime, featuring Luke Skywalker, helps keep the tight-knit Parsons family grounded. But what's brought them even closer over the past several years is the arrival of their son and little brother, Jacob.

After planning their first two pregnancies, Nancy and Dale were quite surprised to find out they were expecting their third child in 2007. Not long into her pregnancy, Nancy was given some unforeseen news by her doctor.

"As we continued with prenatal care, Down Syndrome was suspected, and then confirmed with amniocentesis. It's funny where your brain goes when faced with the unexpected. It was difficult news. Neither Dale nor I had much experience with any person with intellectual disabilities, and naturally, we assumed the worst scenarios. I was worried about my son being teased in school, not getting a prom date, all sorts of random things. But our pediatrician said to me, “Nancy, he’s a baby. He’s going to eat, sleep, and poop. That’s all we need to worry about right now. We will figure out the rest as we go along - isn’t that what you do with every child?” She was so right."

With continued words of comfort and support from their wonderful team of doctors, Nancy and Dale were able to bravely process and move forward in their pregnancy with a positive outlook just as they had with Katy and Hunter.

"We came to realize that we were so much more prepared than many families would be – we have good friends who are nurses and teachers, a comfortable life, a strong marriage. We were blessed, and our baby would be, too."

About 1 in every 700 babies in the U.S. is born with Down Syndrome, making it the most common chromosomal condition – and there are over 250,000 families in the U.S. with first-hand experience. Nancy and Dale were far from alone in their diagnosis journey.

jacob jackolantern

One of the more challenging parts of handling Jacob's diagnosis was figuring out the best way to explain it to family, friends, and coworkers who may not know or understand much about it at all. Luckily, they had a little poetic help.

"For adults, I got very good at summarizing the Welcome to Holland scenario. The story basically goes like this: You’re planning a trip to Germany. You’re super-excited. You have clothes picked out, you study your maps, you learn some German words, you plan to see the Rhine Valley. Your plane lands, and you step out to see windmills. The plane brought you to Holland. Now it’s your choice how you react to the impromptu landing. You can either spend your entire trip in a strange hotel, being upset that that you’re missing Germany, or you can go experience a new place. It’s probably incredible, even if you don’t know where you’re going. Having a child with a disability is like landing in Holland – it’s not what you planned, but it’s still joyful and beautiful."

As for explaining Down Syndrome to Katy and Hunter, Nancy said it didn't require much 'explaining' at all.

"He was just their baby brother. As Jacob grew, the differences in his development became more apparent, and it opened the door for us to connect with other families in the Down Syndrome community. Katy and Hunter were able to meet kids their own age who looked a little different and played a little different but found out there was nothing “wrong” with people who have disabilities. Kids usually follow the lead of the adults around them, so it's important for parents to set that good example for their little ones. Current research supports that siblings of a person with Down Syndrome feel that their relationship made them a kinder, more empathetic person and I know this to be true of Katy and Hunter's interactions with Jacob."  

Screen Shot 2019-10-25 at 11.11.00 AMWhile she understands it's out of her control how the public responds to Jacob when they go out as a family, Nancy admits in her perfect world, no child - whether they have a disability or not - would be judged or defined solely based off of one noticeable characteristic.

"Sometimes, when people hear that my son has a mental disability, they aren’t sure what to say. My suggestion is to just remember that no person can be defined by a medical diagnosis, or by any other genetic trait. I can say “my son has blonde hair” but that doesn’t really tell you much about him as a person. Genetically and otherwise, we are all far more alike than we are different. If you don’t prematurely judge someone by the color of their hair or how tall they are, I would invite you to also keep an open mind about someone who has a 'disability'. It's important to keep in mind that just like everyone else, people with Down Syndrome are unique. Some have additional health problems; some don’t. Some are generally happy; some are grumpy or moody. And some, like Jacob, have Autism in addition to Down Syndrome. That diagnosis was also hard for us to accept, but it helps Jacob’s teachers know how to best support him."

Now 11-years-old, Jacob unknowingly reminds his family daily that life's challenges shouldn't be overcome alone. The better-together approach is how the Parsons family, like so many others, take on the good and the bad of medical conditions like Down Syndrome and Autism, with grace.

Screen Shot 2019-10-25 at 11.10.12 AM"We have found that as a family, Jacob’s challenges bring us closer together. We are accustomed to being a team because we know that we each have a part in keeping Jacob safe and navigating him through the world. Many of our Missouri cave trips involved a big kid in a frame backpack and a great workout for Mom. When we go to the grocery store, Hunter keeps Jacob occupied by naming the colors of things on the shelves. Each morning, Katy supervises Jacob getting dressed, to be sure his shoes match and are on the right feet. It's a group effort, but we do it without question because of how much we love him."

Nancy, personally, has learned much about the virtue of patience and open mindedness from Jacob's behaviors, both qualities she has found to be essential in better handling situations that arise in her own life.

"Jacob is such a funny, tenacious little boy. You can sometimes almost see the wheels turning in his mind – or hear them, as he tends to talk to himself about what he’s thinking, unaware that others know what he’s saying. I’ll hear him whispering down the hallway, “Star Wars, Star Wars, Star Wars…” and then he appears before me, slowly enunciating, “I…..want…..Star Wars…..please.” If I don’t immediately respond by turning on the DVD player, he will wait about 30 seconds, look me in the eyes, and say, “List – en. I….want….Star Wars….please please pleeeease.”

Sometimes, Jacob seems not to hear his name, or instructions from an adult. But he’s had multiple hearing tests, and he hears just fine. You just have to wait for what you have said to sink in. Be silent for a minute. He has taught me to be more patient with others, and to allow them to process their thoughts. Being Jacob’s Mom has really brought this home for me in a special way: Even when people think or react differently than me, that’s okay. They are allowed to be themselves. Everyone contributes to this big world, and sometimes you can learn something if you just let them do it without judgment."

Nancy says she’s often asked about her goals for Jacob as he gets older.

"When you’re a parent, you always have dreams for your kids. But you probably would never say, “If my daughter doesn’t become a brain surgeon, then I’ve failed.” Most parents want their kids to be healthy and happy, and to make some positive impact on the world. That’s what I want for Katy, Hunter, and Jacob, too."

Her advice to other expecting parents who have received a diagnosis similar to Jacob's? Find comfort in the uncomfortable.

Image-6"Before Jacob was born, we met with another family whose son with DS was 12 at the time. That meeting changed our whole outlook, and I try to “pay it forward” whenever I can. Unfortunately, some doctors can be, um… insensitive… about relaying the dry medical facts.  There is nothing you can do to prevent – or to cause – an extra chromosome. It just happens. It happens to different people all over the world, from all walks of life, backgrounds, and religions. It’s not a punishment or a gift unless you choose to think of it that way. It will be okay. Reach out to a group in your area and they will help you find another family with a similar experience – it really helps to talk about it. Go see Peanut Butter Falcon, or find old episodes of Life Goes On. And be sure to read Welcome to Holland."    

In support of Nancy, Jacob, their family and so many others who belong to or have been touched by someone within the Down Syndrome community, CFM helped sponsor the Step Up for Down Syndrome Walk and Festival in Columbia, MO, organized by the Down Syndrome Guild (DSG) of Central Missouri. It's pretty evident that Jacob had the time of his life during the event, posing with Miss Missouri, his Mom's work family, and Truman the Tiger. For more information on how you can support the DSG organization and future Step Up walks, go to kcdsg.orgScreen Shot 2019-10-25 at 11.14.59 AM

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