My children inspire me on a daily basis. They make me want to be a better person. They inspire me with their words, their actions, and their amazing ability to fight a disease like Duchenne with such grace. I work hard every day to serve them with love, humility, and compassion. I want my children to feel loved unconditionally. I never want them to feel like their needs are a burden to me. I strive to have a servant’s heart.
It’s an honor to care for my children, but I often fear others won’t have the same outlook when it comes to interacting with them. I worry about them being mistreated, bullied, or overlooked because of their disability. I fear they’ll become defined by their limitations when, in reality, they should be defined by their courage. I don’t want people to see their disability as who they are; it is simply a small part of who they are. I want people to see past their wheelchairs and into their hearts.
The other day I witnessed a beautiful example of what it means to have a servant’s heart. We were having a family dinner at my husband’s parents’ house. Food was cooking, kids were playing, and my oldest son was riding around outside in his powerchair. He was giving his cousins rides on his lap and having fun racing around the backyard with his siblings. It made my heart so happy to see him engaging with everyone. His brother, my eight-year-old son, can still walk around and play somewhat freely, but my ten-year-old will sometimes withdraw now that he is dependent on his powerchair.
My heart began to sink a little when I saw the kids start to play tee-ball. Balls were flying around, bats were lying on the ground, and my son just sat there watching. He is used to not being able to do certain things, and frankly, my boys never seem to mind when other kids are doing something they can’t do. They’ve never had much of an interest in sports anyway. They are very accepting of their limitations and never expect others to miss out on fun things because of them.
Still, I always worry they will feel left out, but what happened next took all those worries away in an instant. I watched as my six-year-old nephew glanced over at my son and then quietly walked over to pick up a bat. He then grabbed a tee and set it in front of my son’s powerchair. After placing a ball on the tee, he quietly handed him the bat. Tears filled my eyes as I watched my son proudly swing the bat with all his might.
The past few months have been really hard for us. We’ve been struggling with the fact that our son is losing ambulation at such a young age. Life has been emotional lately, but my young nephew didn’t know that. He didn’t know that my son has been struggling with depression, nor did he realize how much his simple act meant to me. He didn’t do it out of pity or to receive anything in return; he just put someone else’s needs before his own. That’s what it means to have a servant’s heart. It’s not about grand gestures or the right words, it’s about small acts of selflessness.
My smile got even bigger when I heard him shout, “Mom, come watch me!” As he hit the ball again, I realized that I couldn’t even remember the last time he swung a bat, or even wanted to participate in something like that. It may have been a simple moment for everyone else, but for me, it will be a life-long memory.
I think people often assume that, as a Duchenne parent, I expect grand accommodations for my boys, but that’s not the case. It’s the simple things that make the greatest impact. It’s all the little things that make us feel loved. It’s about the moments that make my boys feel welcome in a world that wasn’t made for them. Whether it’s my four-year-old daughter picking up legos off the floor for her brothers or my six-year-old nephew including my son in a game of tee-ball, I think we can all learn something from the heart of a child.