The news of a pregnancy is often met with a vast variety of emotions depending upon the circumstances surrounding the pregnancy. Concerns about our ability to parent well, to be able to financially provide for a new human, to be able to give enough love to a new child, all often secretly bounce around in our hearts and our heads long before we find bravery enough to verbalize them to other people.
But by far one of the most invisible and scary thoughts we often have with the news of a baby is this: “Will my baby be healthy? What if there is something medically wrong with my baby?” It’s a consuming thought that all moms--both new and experienced--fear at one point or another during the pregnancy.
Gabby Johnson already had two boys when she discovered she was pregnant with her son Jaxson, and so although she went through the typical worries and concerns as most other mothers, she didn’t really have any reason to think this pregnancy would be different than the others.
“We wanted to find out the baby’s gender, so we did an early blood test,” Gabby explained to me. When the results came back that baby was a boy, the family was elated. But the blood test also came back with other information--there was a high probability that their baby boy would have Down Syndrome.
Gabby and her husband Jeremy were surprisingly relaxed with that news, even given the fact that they did not know anyone who had Down Syndrome. They decided to wait for confirmation from further testing, which, at 22 weeks gestation, ultimately confirmed with 99% accuracy that little Jaxson would have Down Syndrome. But it came with dire news: Jaxson appeared to have a heart defect that could require surgery after birth. “We didn’t care that he had Down Syndrome, but this was a part of the pregnancy where we were scared,” Gabby said.
When Jaxson was born, there was a brief moment when Gabby and Jeremy thought that maybe Jaxson did not have Down Syndrome and the tests were wrong. As they were waiting for blood tests to confirm, Gabby discovered her nurse had a child with Down Syndrome. “She sat with me and explained some of the physical features her child had compared to Jaxson. We talked all night. It was pretty obvious, then, that Jaxson did in fact have Down Syndrome, and she made me feel so much better about everything.” But the best news was yet to come: Jaxson’s heart defect would not require surgery at all, and instead would focus on extra therapy.
Learning to be a parent of a child with DS was new territory for the Johnsons, and so they reached out on Facebook to find a community of other parents. Having a child with DS has not only changed the way Gabby has been as a parent, but also professionally, as she has now worked as an aide in a special needs classroom.
Jaxson is now almost 5 years old and he is a happy, healthy, and active child to say the least. He is also getting ready to start school, which for parents of children without DS, is usually a happy, exciting time. But for Gabby and Jeremy, it has become a source of frustration as they maneuver the Beaverton School District. “The Beaverton School District is not huge on inclusion into the classroom for children with special needs like Jaxson,” Gabby explained. She worries that Jaxson will have to be bussed to a different school than his where his brothers went to get the services he needs.
But she is doing what all great moms do--they prepare themselves. Gabby is working with the Northwest Down Syndrome Association (nwdsa.org), which she raves about, through a 9 week kindergarten cohort which advises parents on how to approach their child’s IEP (Individualized Education Program), as well as how to positively assert themselves during IEP meetings with school officials to make sure their child’s education is as inclusive as possible. This has made her feel more confident and prepared as Jaxson gets closer to his first day of school. (Click here for a great blog article on what inclusion in a classroom means).
But entering school brings other anxiety and worries, and like any mom, Gabby is worried how Jaxson will do with peers once he is in school, and if they will include him. “We don’t have to teach adults to love kids with DS--we have to teach the kids. I’ve been in a school and I’ve heard some of the things kids say about kids who are ‘different.’ I’ve heard some pretty horrible things come out of third graders’ mouths before, such as calling special needs kids ‘gross’.”
This includes the use of the word “retarded” or commonly now referred to as the ‘R’ word. “I wish all people would just exclude that word from their vocabulary,” Gabby explains. Even now, people who know Gabby and her family will openly use the word around them and then get defensive or apologetic stating they didn’t mean anything by it and that it means, “slow, is all.” Gabby demonstrates a lot of grace, though, when acknowledging that it’s a process for some people to realize the weight of the word on others. “I know I used that word myself as I was growing up and probably into adulthood, but when we discovered Jaxson’s DS, that made me understand instantly why I needed to stop.”
When I visited Gabby and her family at their home for the documentary photo essay of their story, Jaxson was there to greet me and “show me” his home. He was “all boy”--between wanting to see my camera, to running over and trying to climb on the TV stand, to asking mom to play with him, he was a big ball of fun energy.
I asked Gabby what her greatest reward of having a child with Down Syndrome so far had been, and she emphatically stated, “The love that we and everyone has for Jaxson. He brings so much joy and laughter to everyone he meets. Our lives would not be the same without him.”
After meeting Jaxson myself, I would agree...wholeheartedly.
DISCLAIMER: #seetheinvisible stories are stories told to me, nothing more, nothing less. I make no judgment as to their claims of validity of facts or circumstances, but rather I see myself only as the conduit people choose to help tell their story to the world. It's my hope that through the process of bringing this story to the public, it will foster connection, inspiration, and brotherhood. One human to another. I hope that by reading others' invisible stories, you find a bit more of your own story.
ABOUT THE AUTHOR:
Nicole Severson is the owner of Nicole Severson Photography in Beaverton, Oregon. While she adores all types of photography, her heart lies in photographing families through documentary photography. She grew up in small-town Wisconsin where she was a middle school English teacher for 13 years. Storytelling has always been a theme in her life, and when she started photography professionally five years ago, she knew she had found the perfect outlet to tell stories in a visual way. Photography finally beat out teaching (it was a hard fought battle, though), and after resigning from teaching, she and her family moved to Oregon to be close to her oldest son (she is self-proclaimed “bad empty-nester”) and to restructure her photography business into a full time gig. Her newest venture is blog titled #seetheinvisible in which she talks to people about their invisible every day stories and visually tells their story through a photo essay component, which she hopes to continue doing well into the future.
5 Comments
Dec 30, 2019 3:02:33 PM
Allie Yackel - I've worked at a school for kids with severe learning disabilities...the Downs students were ALWAYS the most happy and upbeat. I don't think I have ever come across someone with Downs Syndrome who didnt brighten the room as soon as they walked in.
Dec 29, 2019 12:30:52 AM
Patricia Reed - Our fifth child has Down Syndrome. Our family has many miracles. We had our first child and then due to secondary infertility had to wait 14 years for the next 4. We cared for my mother with Alzheimer’s for three years when the kids were younger. I suffered a ruptured brain aneurysm in the center of my brain Dec. 2014, but thankfully survived brain go on and care for my family.
Dec 27, 2019 11:11:11 PM
glenna - This is great
Dec 27, 2019 6:43:09 PM
Janeris - I love this so much!!
Dec 26, 2019 9:35:44 PM
Christie Dorst - Well done. I look forward to reading more.