Grace Long is served through the Marion County Board of Developmental Disabilities Early Intervention program in partnership with Marion County Help Me Grow. Grace’s journey has only just begun as she was born in July of 2019.
In her short lifetime, her parents, Nick and Amanda Long, have learned many lessons. They are telling their story to help those who have recently realized their child has a developmental disability. They also want to spread awareness and advocacy for their daughter and those like her.
As they look back, they admit it has been a life changer, indeed. But positively.
Grace’s mother, Amanda, recalls the moment she realized Grace had down syndrome. “I knew as soon as they gave her to me that she had down syndrome. I noticed the facial characteristics right away,” she said.
Her next thoughts were a series of extreme emotions in all directions.
“I remember being sad that she wasn’t neurotypical and having immediate worries about her and our family’s future. Then, I remember fighting those thoughts with optimism because I knew I loved her no matter what.”
Nick recalls news that was much more alarming to the couple. “On top of the down syndrome diagnosis at birth, Grace was also born with two holes in her heart. To us, this seemed much more life-threatening, and scary.”
The couple admits that the congenital heart defect continues to be their biggest worry for Grace. “Aside from that, she is an absolute joy, and we love to watch her grow and develop,” Nick said.
They speak fondly of her milestones and “isms” and happily come up with many adjectives that describe Grace. “She’s strong, determined, courageous, and resilient, just to name a few,” Amanda gushes, spitting out even more beautiful traits that describe their daughter.
Not one descriptor mentioned a disability or the fact that down syndrome was part of who she is. While the couple proudly admits that it is part of who she is, it does not define her or her ability to live a happy and seemingly typical life.
It becomes quite clear that those secondary thoughts of love and optimism that Amanda had on the day Grace was born are the ones the family chooses to focus on each day.
Nick and Amanda are far from Grace’s only cheerleaders. She has two older brothers, nine-year-old Brandon, and Wyatt who will be four in May.
“They absolutely love their little sister,” Nick said proudly. “They show it too, with lots of hugs and kisses. They are always pointing out how cute she is too.”
Grace was receiving home visits from the Marion County Board of DD until COVID forced those visits to be virtual. The family has felt the hurt of not having those in-person check-ins and is looking forward to the return of their developmental specialist, Angie Meade.
“Angie continues to check in on Grace’s progress, but we miss those home visits. They were great because we could remain in the comfort of our home while she worked with Grace and helped us come up with goals. Angie still gives lots of tips and is doing all that she can to be a support, but it’s not the same for any of us,” Amanda said.
Of course, developmental milestones are always a focus for Grace, and they continue to work through them, goal after goal, but long term, the Long family wants to ensure they are supporting Grace on her journey.
“I want Grace to have a happy, productive, and successful life. So far, she seems to be getting a fantastic start,” Amanda said.
To learn more about those with developmental disabilities in Marion County and the Marion County Board of DD, visit www.marioncountydd.org or visit them on Facebook, Instagram, LinkedIn, and Twitter.