Thoughts on Being a Mama with a Disability

For as long as I can remember, I dreamed of being a mama and for equally as long, I just couldn’t comprehend the dream coming true, for me. You see, the moms I saw, the ones in both real life and on TV, the ones on Pampers and Huggies commercials? Yeah, none of them had cerebral palsy. 

If I can be brutally honest, I had lots of dreams that I had great difficulty imagining coming true and I don’t say that lightly. It was a strange, difficult, thing in my teen and growing up adult years to want and dream of things and at the same time, not really believe that those dreams could be meant for someone with a disability. 
I watched my sister date and longed for a boy to sweep me off my feet. Yet, high school or even college age boys were not that way for me. I went on a few dates, but really seeing myself as the object of someone’s want? I couldn’t even fathom… and I suppose if I couldn’t really fathom that, how do you really imagine being a mama? 

Then, for me personally, it was all the way God planned. I don’t write that with any expectation that your story includes God, but mine really, does…. 

I met my now husband in my late 20’s,fell in love for the very first time, was sure he’d wake up one day and decide he didn’t really want to be with a girl with CP (he hasn’t after 24 years together) and that the dream of our life would be over. When we got married, I began to lean into the possibility of being a mom, still with my doubts. He proved to me the first part, (being the object of his want,) but the questions about my own physical capabilities and motherhood only grew exponentially as we began to dream about the possibilities.

How will I_____? 
Can my muscles _____? 
What if_______? 

I had NO frame of reference or role models for mamas with CP. Yet, my desire for having children, being a mom who could love, fiercely and well, teach, play with, hold, soothe, comfort and marvel at my dream babies only got stronger. In fact, I told (almost) hubby a few nights before our wedding that I wanted 4. He smiled broadly and said, “ok.” (He is a keeper…)

When I took a pregnancy test in our 8th month of trying, I was overcome and scared shitless, simultaneously. Not of motherhood, but of my bodies’ limitations. I cried huge tears throughout the whole pregnancy of not wanting my disability to negatively affect my already loved babe, fear and resolve to bring them into the world safety and to somehow, figure out how to do all the things other parents can. I talked through a lot with trusted sister friends and family, some who already had kids. I will never forget asking, “How will I handle the toddler years? I won’t be able to chase them if they run toward the road or away from me!” She hugged me tight and said, “So you will teach them to listen really well so you don’t have to.”

There was a LOT to learn when our oldest daughter was born, then again when our son was born nearly two years later and finally again when our youngest, 3 years later. There is still a lot to learn…

Along with the mind-bending love, and joy, were many fears, so much figuring out ways to mother in my own way physically. There was worry and insecurity to process with my own therapist, because, thank goodness, therapists need therapists too. There was learning to manage my own expectations and facing the jealousy I have because my husband is more than able-bodied; the soaring pride and jealousy that rears up because my kids are all swimmers. At every turn, I have learned, grown and faced the hard with CP and the oh, so beautiful that is being their mama. 

Yet, it is they who’ve taught me so much. My biggest and worst fear was that somehow, they would be negatively affected, embarrassed or ashamed because they have a mom with CP. They have all told me that that has never been the case. And our life together is the proof…

When I was the reading helper in first grade and I heard another kiddo ask my daughter, “why does your mom walk like that,” her response was, “because she’s my mom.” When in 3rd grade the class read, Out of My Mind, by Sharon M Draper” and my youngest couldn’t wait to tell her friends, “My mom has cerebral palsy too!” When my son, who now towers over me at 17, still takes my hand in front of whomever, just the way he has since he was little, the way they take turns pushing the wheelchair and planting kisses on my head when we are out and about, or their indignation and righteous anger when we come against ableism, judgment or issues related to accessibility. 

One of the most important and humbling lessons came when my youngest daughter was about 8. For as long as I could remember to that point, I had a terrible habit of muttering, “My feet are really stupid,” when my muscles would mis-fire, when I was frustrated with my movement or when I would stumble/fall. One night I must’ve been muttering, because she came running into the living room with a yell. “Mama! You said we are not supposed to say, stupid! Why are you calling your feet that?” I gulped, aware that I was adamant about that. I stumbled with my words and tried to make an excuse, she would have no part of it. “You cannot say that anymore. And (with hands on her little hips,) your feet ARE NOT STUPID!”  From then on, she watched and listened like a hawk. She would bust me if I even mumbled. And she taught me the power of how we speak to ourselves, that others ARE paying attention, as are our bodies and minds. Most importantly, she showed me that it is SO important to be kind, even when we are so insecure. 

My journey with motherhood as a disabled woman has not always been physically easy. But I say with all seriousness; there is no other part of my life I love more than my marriage and life with these now teens. They are the picture of grace to me, what true love and acceptance are really about. I asked them in writing this about their thoughts about growing up with a disabled mom. 

“I have a bigger appreciation for my mom because of all she has taught me about disabilities really are on a deeper level and they differ from most people’s view.” 

“My mom having a disability in no way defines any part of her besides contributing to her strength, ability to overcome anything thrown her way and the way she sympathizes and connects with others on a deep, emotional level. I have always loved that I know someone who has a disability, despite it being sucky for her, because without that I think I would not have near the empathy and understanding for people with different abilities that I do, because of cerebral palsy.” 

“Having a mom with different abilities is badass. She has overcome so much and I get to show off how cool she is.” 

“My wife is far more capable than she is disabled. Abilities can’t be measured by physical capabilities; that is such a small piece of everyday life.” 

(I promise, I did not pay them – these are word for word, their own thoughts.) Also, who is cutting onions? 
I am humbled by it all, the journey, the privilege of motherhood, the challenges and the grace. 

Wherever you are in your parenting journey, I am cheering you on. This holiday can be a tender, celebratory, grace-filled and painful one – depending on our own stories. You are not alone – we as mamas are not alone. May we see each other’s successes, needs, tears and joys as reflections of our own. May we cheer each other’s kids on, offer the support we ourselves crave and most of all, know that the title of Mama -  comes with badass right behind it. If you don’t believe me, ask one of my teens. She will tell you like it really is.