In the past few weeks, I’ve had the opportunity to spend a generous amount of time with my nieces and nephews. Quality time with the kiddos is one of the things I cherish most in life. And sometimes I wish adults were given the superpower to see life through the lenses of children. They naturally are less likely to judge, more easily able to forgive, inquisitive, and more understanding than we often give them credit for.
Living with spinal muscular dystrophy (SMA) is wrought with constant emotional ups and downs. I can’t count how many times my nieces and nephews saved me from falling into a deep depression. Their little hugs, and sweet “I love you’s” can warm your heart in an instant. They somehow magically make me forget about being in a wheelchair while I’m around them. The effort they make to include me in all their activities is the most selfless act of kindness I’ve ever experienced. Their love pushes me to keep pressing myself to become the healthiest and best aunt I can become.
There was a recent summer party I attended, and my niece Aria was getting pushed in a wagon by my nephew James. They both called me over to join them. They understood I couldn’t push them, but they desired me to come along beside them for the ride. Aria even made a cute comment by saying, “aunt Lee Lee (my nickname) is in her high chair, so she’ll roll next to us.” I couldn’t help but laugh at her innocent, but still accurate observation. She was comparing my chair to her baby sister’s high chair. And it made me think Aria views me as the rest of the “crew,” no different from anyone else, yet is sensitive to my needs.
Read about experimental therapies for SMA
In addition, she’s always begging her mom to come over to my house. She enjoys painting with me. I’m not sure if she’s a true fan of it, but she knows I love it. And the thing that’s so beautiful is seeing how happy it makes her to see me happy. She’s my biggest fan and tells me how great my paintings are. There is not one thing she doesn’t want me included in, and it truly blows me away. We sing worship songs together, bake together, and the list goes on. She truly is the Aria to my symphony of life.
And, when both she and James are together, they require me to be in the middle of everything we do, so I’m equally split down the middle for them. I won’t ever have to wonder what it’s like to feel like a celebrity; they do a good job at making me feel like one.
I feel so blessed to witness such unconditional love and understanding, and at the same time be able to receive it. Aria and James were never taught to act a certain way toward me; it’s innate in them. Nevertheless, I find it important to expose children to different disabilities as early as possible. It teaches them kindness without an instruction manual, and it allows those who are chronically ill to feel loved, comforted, and accepted.