Editor's note: Today (Tuesday, March 21, 2017) is World Down Syndrome Day. To recognize that, we're sharing a story we wrote one year ago about how a Down syndrome diagnosis made this Tucson mama's life so much sweeter.
Moments after waking from a deep sleep, 14-month-old Anderson Benfield is all smiles in Mom’s arms.
He’s a people person, says Jillian Benfield, holding her son. He just learned to clap and has a few words in his vocabulary — “dada” and “all done” being the current favorites.
“All done” is what he says at therapy, Benfield, 28, says, laughing.
Every week Anderson is in speech, occupational and physical therapy. He has Down syndrome.
Benfield has shared the family’s journey on her blog, News Anchor to Homemaker, and recently became volunteer communications director for the Down Syndrome Diagnosis Network, a national nonprofit designed to help parents facing a Down syndrome diagnosis and to educate physicians with current information they can provide parents when a child is diagnosed.
The Benfield family poses for a photo.
“I have grown so much in this first year of his life as a person,” Benfield says. “I used to be sad how Down syndrome would affect his life. “Don’t get me wrong — there are things that are going to be harder for him. … But I am just really thankful for Down syndrome and what it has added to my life and what it will add to his life, too. It’s a different life. It’s not a less-than life.”
But she hasn’t always felt this way.
The diagnosis
Benfield calls the diagnosis she and her husband, Andy Benfield, received “the 1940s version of Down syndrome.”
She remembers it vividly — around 21 weeks pregnant, sitting on crinkly paper, surrounded by white, sterile walls. There, a doctor told the couple their unborn son was 99 percent positive for Down syndrome.
He laid out some options.
They could terminate the pregnancy.
Benfield could give birth but then after labor the hospital would “essentially let nature take its course,” decreasing the chances of the baby’s survival.
Or the couple could raise their son — although it was clear that was not the doctor’s recommendation. “He may never be able to feed himself,” the doctor said. “At best he’ll mop floors of a fast food restaurant someday.”
But these words shocked her the most: “I don’t want you to feel like you have to be a hero here.”
Both 26 at the time, the Benfields grieved their diagnosis as if grieving at a funeral.
The sight of children playing would make her cry, believing her son would never have friends.
“I thought I was educated, but had no idea how ignorant I was,” she says.
Before choosing to stay at home with Anderson’s older sister, Violet, Benfield worked as a broadcast reporter and news anchor in South Carolina and then Georgia. She was always learning, always researching. She thought she knew about the world.
Healing and Sharing
Benfield launched her blog when her husband, a dentist in the U.S. Air Force, was sent to Las Vegas from their home in Augusta, Georgia, for a year-long dental residency in the summer of 2013.
Their daughter Violet had been born that August, so with friends encouraging her to do so, Benfield started writing about cooking and life. She researched best blog practices, aware that this endeavor would probably never earn any cash or amount to much more than a side hobby.
She wondered why she was launching a blog at all.
“And then we got the diagnosis, and it all started making sense,” she says. “There was a bigger purpose to be had through it.”
The Benfields announce in 2014 the addition of a boy to their family.
In the fall of 2014, with the pain of the Down syndrome revelation still fresh and raw, Benfield started writing about her pregnancy as a way to process. Since then the blog has grown from about 600 to 4,300 followers.
Looking back at those honest and broken posts still hurts.
“But I keep it there because I know somebody else is feeling that way too, and I want them to see the evolution that can happen,” she says.
While still pregnant, Benfield began interacting with other moms through the Down Syndrome Diagnosis Network. The 2,300 families that use the network interact on 18 private groups online, according to the age of their child. The organization works with parents who have prenatal diagnoses and parents of young children.
“It’s a nice way to be able to talk to other families,” says Jen Jacob, the Iowa-based vice-president and co-founder of the network. Locally, “You may get to know other families with small children, but you might not know other families with a child with Down syndrome.”
In Tucson, Benfield only knows of one other family in their situation with a child Anderson’s age, so she relies on “traveling this journey with hundreds of other women,” thanks to the the network.
It took her a while to believe their positivity, though. At first she thought they were faking.
“Meeting the other moms, it moved me from grieving to acceptance and fully loving my child,” she says.
And on Dec. 31, 2014 — three weeks after the family moved to Tucson from New Mexico — Anderson arrived.
Passion replaces fear
Anderson and 2-year-old Violet are starting to play together.
“She will pretend Anderson is chasing her, and he will chase her …” Benfield says. “And Anderson is really into blowing raspberries right now, so they’ll do that back and forth, and he thinks that’s hilarious and starts laughing, so she starts laughing. It has taken a year, but to see that sibling relationship start to form is really cool.”
Jillian Benfield pushes her kids Violet, left, and Anderson, right, as they play together.
Deep connections in families dealing with Down syndrome are common, Benfield has found through personal experience and research. She points to a study published in a 2011 issue of the American Journal of Medical Genetics Part A that says 94 percent of older siblings surveyed expressed pride for a younger sibling with Down syndrome. Again, she learned.
Day to day, Down syndrome hasn’t changed the family’s life. Benfield shuttles Violet to preschool, carts Anderson to therapy sessions and tows kids on errands. The kids nap at the same time — with special coordination — so Benfield can run her blog and manage social media and communications for the Down Syndrome Diagnosis Network.
As Anderson grows, his parents will have expectations for their son, just as they do for Violet. If anything, Down syndrome has made the Benfields more intentional in their parenting.
Mandy Jester, a friend of Benfield’s, has a 2-year-old daughter and 4-month-old son. Her kids love Benfield’s, and Jester, though not raising children with special needs, has found inspiration through her friend as she has watched passion replace Benfield’s initial fear.
Anderson just days before his open heart surgery.
“Her blog inspires me with my kids to see their potential and not obstacles no matter what,” Jester says. “Every story is going to be different, and to watch someone develop from being scared of what the future would be to embracing it and seeing a future for kids, it’s awesome.”
For all of Benfield’s gratitude for Anderson, she is not naive. She knows his life will have challenges.
He’s already faced open-heart surgery to fix two holes in his heart. He was just 5 months old.
‘God makes all things for our good’
After his quick recovery, Benfield penned a letter of thanks to the surgeon who operated on her son and sent it to Phoenix Children’s Hospital. Also posted online, the letter got picked up by “Good Morning America,” the “Today” show, and other outlets.
“My faith has played a huge role in all of this …” Benfield says. “I think God makes all things for our good, and I think that our really terrible awful diagnosis experience was for our good and other people’s good.”
Because she lives the transient military life — the family is moving soon — Benfield sees her blog and work with the Down Syndrome Diagnosis Network as a way to encourage other parents, even if she can’t put down roots in one community.
“I left (after the diagnosis) feeling like there was no hope,” she says. “I felt like our story became sad and tragic. I want people to know the opposite. I feel as if Down syndrome, it will bring complications, but it has added so much to our lives.”
