When reflecting on her experience as a parent caregiver, Spreading Sunshine founder Abigail Sacran describes it as “all-consuming.”
“It never ends. We’re still not sleeping through the night. We’re always on call. Our reality is this is how it will be forever. We want [David] to be as independent as he can be, but it’s most likely that he’ll be living with us forever.”
Abigail, mother and caregiver
As part of our spotlight on caregiving and promotion of the Memphis premiere of the documentary UNSEEN, we have begun a multi-part series featuring Spreading Sunshine families. Caring for children with complex medical needs impacts caregivers’ emotional, mental, and physical health. These stories will shine the light on the unique challenges these families face so that communities can better provide empathy and practical support.
Meet Our Founder: Abigail Sacran and Family
The birth and medical journey of one boy spurred a viral movement of kindness. Let’s meet the Sacrans, the family behind Spreading Sunshine.
Married for nearly twenty years, Louis and Abigail live with their children Lily (13), and David (9) in Mississippi, where Louis is a pastor.
Abigail homeschools her children, coaches her daughter’s volleyball team, and serves as an advocate through her work with Spreading Sunshine.
Lily, who her mom describes as her “saving grace,” is a social teen, volleyball player, and talented performer. In fact, she was the second runner-up in her town’s talent competition where she sang while performing a ventriloquist act with her puppet.
Like many boys his age, David likes Nerf guns and Minecraft. He has an amazing memory and can quote movie lines. He’s joyful and funny and naturally in tune with people’s feelings.
As a family, they like to spend time at the beach, play games together, and watch movies.
A Shock Diagnosis and Early Surgeries
Affectionately nicknamed, “Sunshine” by his sister, Lily, David’s birth and the days that followed, were anything but typical. Just hours after his arrival he required heart surgery to repair a complete atrioventricular canal defect (CVAC), a large hole in the center of the heart, that went undetected during Abigail’s pregnancy. This was just the first of David’s medical challenges. After being transferred to a children’s hospital the day after he was born, Abigail and Louis were told that David had Down syndrome.
While many families have some time to prepare emotionally and practically for this diagnosis, it was a “complete shock” to Abigail and Louis, as well as the physicians. David had no markers for CVAC or Down syndrome during any prenatal scans. While Abigail admits his news was “devastating,” she believes that not knowing during her pregnancy was the Lord’s protection from additional stress.
A few days later David received a diagnosis of Hirschsprung’s Disease, which affected his colon and caused problems passing stool. Newborn David was in the operating room again for surgery to remove the diseased section of his large intestine and connect it to a healthy portion. Years later it was discovered that a portion of the dead bowel remained, requiring another surgery.
Potentially A Lifetime of Parent Caregiving
As children develop they typically grow in independence, such as sleeping through the night or potty training, providing parents some respite from the demanding infant and toddler years. That “light at the end of the tunnel” is often delayed or unattainable for families of children with developmental disabilities.
“We’ve made friends online through Facebook and Instagram who have boys the same age as David who are still changing diapers. They don’t know when that’s going to end.”
Doctors initially told Abigail that with the combination of his Down syndrome and Hirschsprung’s, “IF David potty trained… to expect him to be 12 years old.” Blessedly, he potty trained at six years old, however, his condition causes gut infections that require cleaning out his colon and accidents that require assistance.
Because of the complications of his Hirschsprung’s the list of people who can babysit David other than his parents is short: his grandparents and aunt.
While dropping a child off at a homeschool co-op can mean a coffee date for some parents, Abigail and Louis take shifts to be “on-call” in case David needs help toileting there. When it is Abigail’s turn, she never travels beyond three to five minutes away.
“He still does not sleep through the night, and that’s typically something you’re past at nine years old,” Abigail adds.
Because David lacks a concept of danger and is prone to wander off he cannot go outside and play alone. This means that his parents still constantly have to be on guard for his safety.
Finding Respite at Home and Her Village Online
When David was young people were more eager to step up and serve her family, “People are all “what can we do? how can we help? Let us do this for you. Let us do that for you,” Abigail shares. As time goes on, while the journey continues, the offers to help caregivers may subside over time.
Thankfully, Louis has been a wonderful source of support.
“Most caregivers don’t get a break. My husband is very aware of my limitations and needs and is very good to help shoulder those burdens with and for me.”
While Sunday is “the King’s day” for her pastor husband, Monday is the “Queen’s day” at their home.” Louis gives Abigail a day off while he does the laundry, prepares meals, teaches homeschool, and takes David to therapy.
“I am free to do whatever I like and that has saved my sanity,” Abigail says.
Abigail laments that despite having a wonderful community of friends she still feels incredibly lonely. She says that people with children who are developing typically often don’t ask questions about how life is with David, maybe because they feel awkward. She wishes they didn’t feel that way.
“I don’t have any friends who are in the same boat as me. I don’t have close friends who can enter into my struggles.”
Finding community online with other parent caregivers has been critical in filling that need for relationships with people who “get it.”
“If I ever want to vent to a mom who has a child with Down syndrome, I turn to Facebook,” Abigail adds.
UNSEEN: A Film Shining a Light on Caregiving
If you want to learn more about the isolation and challenges that parent caregivers experience, Spreading Sunshine will be sponsoring the Memphis premiere of UNSEEN, an award-winning documentary that tells the story of a family caring for their child with profound disabilities. This film presents an opportunity to educate the community and advocate for parent caregivers. If you’d like information on purchasing tickets or sponsoring the Greater Memphis area screening on November 4th at Highland Church of Christ click here for more information. There will be a resources expo, reception, and children’s programming.
If you’re not in Memphis or are unable to attend the in-person screening, tickets for a virtual encore presentation on November 5th and 6th can be purchased here.
