Almost five years after our third child was born, it’s hard to imagine that I never envisioned my adult life to be exactly as it is now. Drew, my husband, and I have three children. Andrew is 9, Alice Rushton is 7, and our Jayne, who has Down syndrome, is 4 years old. I wouldn’t have dared to think that our life could be so full and, well, so good, with disability as part of our story.
Relatively early in my pregnancy with Jayne, the excitement of the news that a baby was on the way was pretty quickly smothered by days full of questions, medical appointments, and — to be honest — plenty of melancholy stemming from a simple genetic test. I really only pursued early testing to know whether we were welcoming a boy or girl into our crew, but I will never forget the day the results of that test changed everything. I was turning left onto Harden Street from Gervais when a nurse called to let me know we should come in to my doctor’s office that afternoon. Over my car’s speakerphone, I learned that our test results indicated the baby may have Down syndrome. I asked a few questions in my shock, but I nearly forgot to ask whether we were having a boy or a girl and hastily did so before we hung up.
“Oh! It’s a girl.”
An amniocentesis confirmed that our baby girl did have Down syndrome, and the next six months also brought the news that she’d be one of the roughly 50 percent of babies with Down syndrome born with a heart defect. Our tiny girl would require open heart surgery in her infancy. It was a lot to swallow. Middle-of-the-night rabbit holes on social media helped me start to learn that families of children and adults with Down syndrome seemed to be content and happy, but I could never escape the thought that we were standing on the edge of the unknown. I wasn’t sure if we were up for it.
So many families with children who have Down syndrome do not have a prenatal diagnosis. As absolutely difficult as those days were, I am so grateful for that valley of time because Oct. 17, 2018, was a mountaintop. Jayne was born on a sunny Wednesday morning. A favorite aunt told me that nice people are born on Wednesdays. It’s always made me laugh, but in Jayne’s case, it’s proven to be true. She was the most peaceful, beautiful baby. We were delighted to see her round, full face, and her big blue eyes. And she looked much like her brother and sister. Our hard times ended with Jayne in our arms, and instantly we were transported to a life in which we without question were so proud of our new baby.
The first year of Jayne’s life was, however, difficult and riddled with hospital stays, specialist visits, and of course, an open-heart surgery in Charleston at MUSC. All of this coupled with two preschoolers at home was very hard. Of course, we also quickly entered the world of early intervention with weekly physical therapy, occupational therapy, and speech therapy. Jayne’s skilled early interventionist and therapists helped me further understand that Jayne, even at a few months old, was capable and that there were people everywhere who wanted the best for her and could help us figure out strategies to create a path to meet goals we determined for Jayne.
And several years later, it’s clear to me that the critical early intervention and therapeutic time invested in Jayne continues to pay off. We started communicating early with Jayne via simple words using sign language. We worked on puzzles and more to strengthen her fine motor skills. For instance I now know that climbing stairs, a skill absolutely required for Jayne since her room is on the second story of our three-story home, takes immense core strength and coordination.
We now adore hearing her voice call for her big brother or sister, who are the people she adores most in the world, or look at something new and ask, “What’s that?” Jayne is a happy, gregarious child who has never met a stranger. She has a full range of emotions, loves to “read” books, be in the pool with her big sister, and attend her brother’s baseball games. Everyone at the baseball field knows Jayne with her frequent visits to the canteen for snacks.
Seeing Jayne jump and gallop around the music room at Vacation Bible School or climb up the stairs and go down the tallest slide on the playground brings the joy of meeting milestones I never knew I’d be able to appreciate so much. Comparing Jayne’s milestones to a typically developing child is difficult for me. How can I discuss developmental standards like how many words a 2-year-old should be able to express, whether a 3-year-old can jump, or if a 4-year-old can draw vertical and horizontal crayon lines in comparison to Jayne’s ability to do the same?
I’ve decided that these milestone conversations terribly discount the fact that no one works harder than Jayne and her friends with disabilities to succeed, and they undermine the vast network of medical professionals and therapists who devote so much to Jayne’s health and development. I’ve become much more comfortable understanding that Jayne is happy and these days so healthy. I’ve gone from hoping and wishing and working so hard to get our baby Jayne to sit up to having an increased confidence that she can do what she needs to do in her own time frame.
With one more year of preschool to go at Bridges, a preschool program at The Therapy Place that incorporates traditional preschool activities and curriculum with occupational, speech, and physical therapy, I’ve vowed not to worry about what’s next for school for Jayne and just enjoy the years where our child’s educational and developmental needs are being met completely. But as any parent to a child with a disability can likely attest, school can get complicated quickly. Study after study has shown that inclusion is best for everyone and that it doesn’t slow down children like my Andrew and Alice Rushton, who excel academically.
In fact, it pushes them to further academic success and lays the foundation for adults who value inclusion in workplaces. Children with disabilities who are fully included in classrooms and accommodated with the support they need are also motivated by their typically developing peers. We are excited for Jayne to be in kindergarten in a couple of years at our neighborhood public elementary school where our older children have also loved school.
This year, having a preschool environment that manages so much of her various therapies has meant that our time in the afternoons is freed up for Jayne to be part of her first ballet and gymnastics classes. She danced in her first dance recital this spring on the big stage at the Koger Center, and I’ve rarely been prouder. We took our older children skiing this winter, and on an afternoon while they were still in ski school, I got to check out the adaptive ski program — we simply cannot wait to give Jayne the chance to get on skis in a couple of years.
At nearly every turn, I am reminded that the extra chromosome that causes Down syndrome not only brought us Jayne, but it has also brought us more friends and mentors as well as more meaningful relationships with people all around us. I can’t believe it now, but when I was expecting Jayne, I couldn’t escape the thought that maybe people wouldn’t want to hang out with us as much. As much as I’ve learned to give myself a pass for any thoughts I once had that were simply borne out of fear, that one is nearly laughable to me now.
I don’t know that anyone wants to hang out with Drew and me, but nearly everyone seems to be drawn to Jayne. Everyone looks out for her at the swimming pool and is always quick to share a french fry with her if she asks. Our friends at school and church help her climb the stairs or grab her for us when she’s taking off down the hall. And with the legion of friends we’ve met who have Down syndrome or have family members with Down syndrome, we have a whole new community and support system. I can confirm that when we gather our friends who have Down syndrome, their personality traits and likes and dislikes are as varied as you might expect from any group of young children.
I am very aware that as a society, we have a long way to go to ensure that people with disabilities are treated equitably and that Jayne is still very young, but I am thankful for the way she has opened our eyes to this wonderful life. It’s a life that’s worth more than all of the hardships we may face with her education, health, or employment journeys in the future.
I often hear that having a child with a disability leads to a life in which families can lift the burdens of expectations of all of their children. After all, when we really think about it, our children have always been exactly who they’re going to be, and my biggest role as their mother is to guide them to adulthood. Drew and I do have expectations and goals for all three of our children; they’ve just been reframed a little.
We want Jayne to live as independently as she comfortably can, just as we hope for Andrew and Alice Rushton. We want her to have a fulfilling life in which she contributes to the greater good of her community, just as we hope for Andrew and Alice Rushton. We want to do whatever we can so that all three of our children live happy, fulfilling lives as adults.
Our life as a family with three children, one of whom has Down syndrome, is very fulfilling. When I get the occasion to talk with a mom who’s just found out her new baby will have Down syndrome, it’s impossible for me not to enthusiastically say, “Congratulations!” Life may have taken an unexpected turn, but we feel joy, adoration, and gratitude for our life just as it is.