I’m a Mom with a Disability. Here’s How I “Run the Show” in My Family.

I have several roles and identities that add a lot of meaning in my life. First and foremost, I LOVE being a woman. I like pink and sparkles and unicorns. I was raised by some incredibly fierce women: my mother, both grandmothers and three biological aunts, who are all confident, very loving and nurturing, intelligent, and resourceful. If those are the attributes of a “good woman” then that’s what I always wanted to be, because of them.

Nearly as important as my identity as a woman is my identity as a mother. The matriarchs of my family are superhero-level moms and have always “run the show” within their household. This was never something that was explicitly stated or even talked about by anyone. It just was – and still is – the reality. Every woman in my family has a unique and special relationship with all of their own children, and everyone else’s children. This is part of what I think it means to be a “good mom.”

So, when I acquired a high-level spinal cord injury as a 21-year-old mother of one-year-old twins, needless to say, I struggled with how I would maintain my identities. What kind of woman and mother can I be if I can’t move my arms or legs? How am I going to “run the show” like they do?

My way. That’s how.

I’ve had to challenge this picturesque, archetypal TV-mom persona that I feel subconsciously pulled to identify with. Running the show doesn’t have to mean that I’m June Cleaver in the kitchen with a fluffy apron. It doesn’t have to be me driving a minivan full of sweaty basketball players, or folding a mountain of clothes. My value as a good mom seems to be traditionally connected with my ability to cook and clean and transport children. Letting go of that pressure has been helpful and enabled me to find other creative ways to be involved.

I’ve always told my sons, Dylan and Daemon, (who will turn 14 years old eight days after Mother’s Day) that we are just like other families, we just have to do things a little differently. We still do all the same family things together, we just have a little extra help. I make sure the boys observe me making decisions about our lives, from what goes into the grocery cart, to future goal planning. I want them to trust me and my choices, no matter how mundane. I firmly believe that we cannot simply tell our kids to make good choices. We have to show them how.

Conversely, I think it’s important that they see that I make bad choices. I mean shit, I’m human. At times, I’m prone to vulgarity, drinking too much wine, being overly critical, irritability and procrastination… just to name a few things. I have many other flaws, and they likely would not change even if I could move my arms and legs.

Society tends to view me on a very broad spectrum. At one end, I’m a broken, incapable, sob story that’s doing a good job for merely leaving my house. On the other end, I’m a glorious, inspirational, and infallible goddess that brightens the lives of others for existing in a wheelchair with a smile on my face. As both lines of thinking are grossly incorrect, I want the boys to view me, and other individuals that experience disabilities, somewhere in the middle. It’s real, and it’s important.

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