Heather Gregg nearly dropped the phone when her doctor shared the news: “Your baby likely has Down syndrome.” The 39-year-old Whitestown, Indiana, mom-to-be had taken the test to check for Down syndrome 14 weeks into her pregnancy as a precaution because of her age. But she expected everything would be fine.
Heather sobbed the whole drive home from work, and her tears kept flowing as she broke the news to her husband, Josh. What would their baby’s life be like? they both worried. What would their lives be like raising a child with special needs? And how would this impact their 3-year-old daughter, Lilah?
Sitting in a meeting with her doctor soon after, his words buzzed in Heather’s ears. “I’m sorry…can terminate…” Heather’s heart skipped a beat.
No! she swallowed hard. This is our baby. And she knew, We will love her no matter what.
Thankful and Blessed
Still, worry and fear haunted Heather throughout her pregnancy. And while she was grateful for Josh’s love and support, she felt so alone. Heather just couldn’t bring herself to share the diagnosis with family and friends. “I don’t want to hear people say they feel sorry for me…see the pity in their eyes,” she told Josh.
But when she held tiny Ivy for the first time and they locked eyes, Heather felt the same rush of love she had when Lilah was born. “She’s perfect,” she beamed.
Thankfully, Ivy didn’t have heart issues, common in children with Down syndrome. And as weeks passed, she grew to be a happy baby, who filled their hearts and home with tremendous joy.
Determined to give her daughter the best life possible, Heather read books on raising a child with Down syndrome, joined online support groups and consulted the Down Syndrome Indiana nonprofit group. All were helpful. But Heather wished there had been someone there right from day one to reassure her and let her know that everything would be okay.
A mom who had a child with Down syndrome who could have shared her happiness with me, Heather thought.
And the more she thought about it, Heather realized, I want to do that for other moms.
Inspiring Joy and Hope
After some brainstorming, Heather decided that she would fill swag bags with sweet, happy goodies to give to new moms of babies with Down syndrome. “I want parents to be excited about their new babies,” Heather told Josh. And when she shared her idea for her Lucky Mama Project with Down Syndrome Indiana, the group agreed to help coordinate and promote the program, which, since launching in 2018, has delivered dozens of bags to lucky parents.
At first, Heather bought the items herself, but as Lucky Mama has grown, she has received cash and item donations, and volunteers help fill the bags with hand-knit hats, socks, books, onesies, and other treats.
“You’re one of the lucky few,” Heather tells parents as she personally delivers the swag bags. “Welcome to our tight community.”
Stephanie Seyfert was caught off guard when her baby was born with Down syndrome. What does this mean? the overwhelmed and shocked mother wondered.
Then Heather delivered a Lucky Mama gift bag with a big smile. “Take a deep breath,” she told Stephanie. “You will grieve for the dream you have lost, but you will eventually see what a wonderful blessing little Ella is.”
“You’re the first to tell me congratulations,” Stephanie thanked Heather. And as they chatted, the new mom felt the cloud of sadness lift and her heart fill with hope. That is the fuel that drives Heather.
“I certainly never imagined my life would be as it is today,” the busy mom of Ivy, now 3, and Lilah, 7, says. “This special little girl brings so much love and light to our family. I want every parent who has a child like Ivy to know what an amazing gift they have been given.”