Growing Up Maury sat down with Amber Sapp, founder of Garrett’s Hero Run, to learn more about her family and their journey with Duchenne muscular dystrophy. Garrett’s Hero Run will take place on October 6th at Maury County Park. Check out Garrett’s Hero Run on Facebook for more information about how you can participate in this great event.
Growing Up Maury: Tell us a little about Garrett’s Hero Run and why you started it.
Amber: When Garrett was diagnosed with Duchenne muscular dystrophy, we were told that there was nothing that could be done. We were literally told to “take him home and love him.” That wasn’t good enough for us. We were soon connected with Parent Project Muscular Dystrophy (PPMD), the largest non-profit organization devoted solely to Duchenne muscular dystrophy. We learned of some grassroots efforts other families were doing to raise money for research and thus Garrett’s Hero Run was born. This will be our 7th annual event on October 6th at Maury County Park.
GUM: We’d really like to help educate parents about the best ways to talk to their kids about children, and really all people who have differences from themselves. I know some friends of mine say they would prefer kids to ask sincere questions than to look away and pretend someone doesn’t exist.
Amber: I think that using a “people first” concept is a great place to start, focusing on the person themselves not their disability. That goes for color of their skin as well. For example, instead of saying, “the kid in the wheelchair,” you might say, “the kid in the blue shirt.” There really should never be an instance where you need to draw attention at all to the wheelchair. The wheelchair is not who a person is, it’s just the way he gets around. I know for Garrett, he would rather you engage him about ANYTHING under the sun other than his wheelchair. I think that for the most part people mean well when they say things like “nice wheels,” or “do you want to race?” but it would be a better choice to just ask him what grade he’s in or what kinds of movies he likes.
GUM: Is there something that you are tired of being asked and wish parents would talk to their kids about at home?
Amber: Honestly, I think older adults are often worse than kids! We get a lot of “Bless your heart,” and “I’ll pray for you” from strangers. While it’s well intended, it does make Garrett feel that there is something “wrong” with him. He gets pretty tired of people he doesn’t know in public coming up to talk to him in a loud voice asking how he is! A good rule of thumb is that if you wouldn’t go up to a random healthy child to speak to them, you probably shouldn’t do it to a child in a wheelchair either!
GUM: What has been the most surprising thing (good and/or bad) about people’s interactions with your family?
We were in desperate need of an accessible van this spring. Our church family, First Baptist Church, graciously took up an offering to buy us a van! We could have never anticipated that! People truly do want to do something to help, but often don’t know how. That was a tangible way people helped us that took a huge load off our family. We have so many volunteers from our church and the community that help with Garrett’s Hero Run each year as well. That’s a great way to get involved!
GUM: Tell us about your personal journey in parenting Garrett and finding strength or weakness in yourself that you didn’t know you had.
Amber: I always think of the quote by Eleanor Roosevelt: “A woman is like a tea bag. You never know how strong she is until she gets in hot water.” Garrett’s journey has unearthed some strengths in our family that we never thought possible. Our marriage has been forced to grow stronger, where many others we know have succumbed to the pressures of chronic disease. It certainly takes a toll. We are grateful for our faith that carries us when we can longer carry ourselves. We have learned to find joy in the little things. This journey is molding us all into stronger, more empathetic people