Met the Gregg Family - Josh, Heather, Lilah, Ivy

By: Heather Gregg - Written by: Rae Swift - Photos by: Jessica Rene Photography

Heather and Josh are Indiana natives; they’re from Centerville and Newburgh. They stayed local for college; Heather went to IUPUI and Josh to Indiana University in Bloomington. They met through a friend at a Coldplay concert 15 years ago. They moved into their Whitestown neighborhood a couple of weeks before their youngest was born.

As a family, they like to go to the park and eat out at LA Café or Stone Creek in Zionsville. Their favorite vacation spot is Captiva Island, Florida where all they use to get around is a golf cart. They love eating pizza and watching America’s Funniest Videos.

Their oldest is Lilah, 7, who enjoys going to the spa with her mom to get pedicures. She’s a cheerleader and soccer player and likes to go fishing with her dad. Her sister, Ivy, 3, loves dancing and playing with her friends. Lilah and Ivy love to put on concerts for their parents in their basement. Their favorite singers are Katy Perry, Ed Sheeran, and Taylor Swift. As a couple, Heather and Josh attempt regular date nights, concerts being a standard favorite. Josh even enjoys playing guitar.

And Heather, she’s passionate about photography and a nonprofit she started after finding out her youngest Ivy had Down Syndrome at 14 weeks pregnant. “This gave us a lot of time to learn about down syndrome and honestly, grieve the diagnosis.” The Lucky Mama Project, a project she began with Down Syndrome Indiana, offers support to new mothers who find out their child has Down Syndrome either during pregnancy or at birth.

“The fear of the unknown while I was pregnant was hard. Not knowing what life would be like with a child with special needs was very scary for us at the time. We educated ourselves, connected with other parents in the community, and were ready for her when she was born” Heather says. After her birth, Ivy was in the NICU for 17 days before she was able to come home with both oxygen and a nasogastric tube. Over time, she became stronger.

Heather says Ivy has changed them for the better. “She has really made us appreciate the little things. She’s opened my heart and mind to people with disabilities… she inspires us with her strength and light. I think that she has made her sister more accepting of kids that are different.”

And Heather’s advice for parents with kids with special needs: “As parents of children with special needs, I think we tend to put so much of our time and energy into them. We want to do everything we can to give them the best life. It’s important to remember to take some time for ourselves. Whatever it may be, even if it’s as simple as 10 minutes alone or treating yourself to Starbucks. It’s something that I am trying to be better at myself.”

She says that sometimes the worries get the best of her. That thinking about Ivy’s future can be overwhelming, but she just tries to take things one day at a time and remind herself that she is doing great. She ultimately just wants her to be healthy, happy, and accepted. Ivy has proved to be one of the most amazing little humans Heather has ever known. “Our family is obsessed with her and life is SO much better than I envisioned it while pregnant.”

If you would like to share your personal or family story, or to nominate someone else to be in an upcoming issue of Special Needs Living? Email us at SpecialNeedsLivingIndy@n2pub.com