As someone who’s had a disability nearly my entire life, I understand that many people only see my wheelchair when they look at me. My 1½-year-old son Jesse, on the other hand, just sees me. His mommy. Mommy, who reads and sings to him, who plays with him and tells him he’s OK when he trips and falls. To Jesse, my chair isn’t who I am, it’s just another tool he can use to connect with me.
My chair allows us to dance with each other every day. When I get him in and out of his crib or the car, when I get him dressed or change his diaper, it’s like choreography for us. I can’t always give him the same kind of help an able-bodied mom could, but that’s OK. Our beautiful, ongoing dance together has made Jesse strong—I already see an independence in him. He’s curious and loves to explore our house, our backyard, our world. Everything is new to him, and feeling his excitement about everyday things like the sky or the refrigerator or our cat—or my chair, which he loves to push—is contagious.
But that’s not to say it’s all been easy. Becoming a mom is the hardest thing I’ve ever done. There are constant questions that need answering: How do I keep him safe, if he dashes off? How am I going to handle bath time? There are not nearly enough resources or adapted equipment made for moms with physical disabilities. I had a very hard time finding a crib—I ended up buying the shortest one I could find and still had to take the legs off just to reach inside of it. I would have loved an attachment to put on Jesse’s stroller and my chair so it would be easier for me to push us both—instead, I had to figure out how to push him and myself separately, at the same time.
What I learned from talking to other moms in chairs is that everyone does things in their own way. Understanding that has given me permission to make it up as I go along. It helps to remind myself that Jesse’s new to this, too. Although there are hard moments, there’s something really special about the two of us learning together.
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Besides, when I think about the lifelong journey and experiences I’ve had with my disability, I can see very clearly how the challenges I’ve faced have made me who I am today. My strategy is to approach each moment with as much joy and positivity as I can, and that’s something I regularly practice with Jesse. When one of us gets frustrated, I try to model patience and perseverance for him. We love to go on walks in our neighborhood. If I’m making my way up a big hill with Jesse on my lap and find myself winded and needing a break, I’ll make up a game or a song for us to get through it. If he gets upset about not being able to do something, I remind him not to give up, to try again.
What I’ve realized is that from the moment Jesse was born, it’s been my responsibility to help him create his own strength and independence so he can eventually grow up and be on his own. All I want to do is keep him safe and see him thrive, but he’s a human being and this is life—sometimes things are hard. My job isn’t to prevent him from facing adversity. It’s to show him how to persevere in the face of it.
Becoming Jesse’s mom has truly changed my entire life. As an actor, I’m always thinking ahead, wondering what will be next, but Jesse has shifted that mindset for me. He’s made me want to be more present, because I don’t want to miss any of these important, foundational moments. Motherhood has done wonders for my confidence and sense of purpose. My son has given me the opportunity to exist in this world without being seen as second to my wheelchair, but I believe that it’s my disability—and the perspective it will give Jesse throughout his life—that will shape the kind of person he’ll become.
Ali Stroker is an actor, singer, and author. She is a member of the 2019 TIME100 Next.
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