These are not new thoughts. In fact, the idea was first spoken to me years ago when my kids were toddlers. The idea was eye-opening and life-changing. And I remember it now and then. I was recently reminded of it when I was belly-aching about how tough life is for ME.
I am still doing some of the things that all my friends stopped doing when their kids left the “baby stage.” I still carry a bunch of supplies for my daughter everywhere I go, while my friends only have to remember to grab their kids. I am frustrated and sad that I can’t figure out what my nonverbal daughter is trying to tell me. I am still participating fully in my children’s self-care.
You get the picture: I’m still doing all the things I did when my child was a baby.
One day, I was tired, frustrated and thought my life was so much harder than everyone else’s. I was mourning the fact that I have such a load to carry. How could I carry on? Poor ME!!
And on that day, I was reminded: This thing—this life, these disabilities, these struggles—are not unique and they aren’t mine. They aren’t mine.
When I remember that I’m the one who provides the support for my children with disability labels, I also remember that this life is, in reality, their deal. They are the ones who really have to carry it. Chloe is the one who is stuck inside a body that doesn’t work like she wants it to work. Zachary is the one whose behaviors are often out of his control, and then he’s stuck with the hurt that his actions sometimes cause his loved ones. They are the ones who live every day and every moment with their disability. It truly is their deal.
This idea is what puts it all into perspective and helps me not get wrapped up into thinking it’s all about me and about being the mom of a child with disabilities. It’s not about me. It’s about them, and it’s theirs.
Don’t get me wrong, parenting a child with disabilities is lots of work. It is work that takes over your life, mandates your every plan, hijacks every conversation, and monopolizes nearly every thought. True.
But it does me some good when I remember that it’s not about me. It’s about her. It’s about him. And it’s my job to support them in the very best ways I can.
And I need to remember to care for myself so that I have enough energy and emotion to provide that support as best I can. But it’s really and truly about them and their lives.
It’s not mine. And it’s not about me. So I choose to get over myself and get back to work.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.