What About When the Parent Has Special Needs? A Personal Story

A mother with Spina Bifida focusing on what she can do rather than what she can't.

mother-with-special-needs

There is no such word as can’t

We often hear the term “special needs parent” and, in most cases, that refers to a parent with a child who has special needs. But what about when the parent has special needs? That is my reality. I have Spina Bifida, and I am the bursting-at-the-seams-proud Mama to a beautiful, healthy, and able-bodied 9-year-old girl. But the journey hasn’t always been easy.

When I found out I was pregnant on that fateful Monday in February 2007, I felt all of the emotions I imagine most expectant mothers feel: fear, happiness, joy, anxiety—and more than a small measure of nausea!  But there were other feelings, too. Would I be good enough? Would I be able to safely care for her, given my mobility issues? Would I have to miss out on things because of my disability? Would she start to resent me because there would be things we couldn’t do with the other moms and kids? My mind was reeling with thoughts of all the ways I might not measure up.

I’m not going to lie. Over the past 9 years there have been many moments of tears and of feeling less than adequate. There have been lots of “Sorry, baby girl, Mama can’t” moments along the way. Mama can’t take off her shoes and wade in the wading pool. Mama can’t give you a piggy back. Mama can’t go for a bike ride with you. Mama can’t carry your sleepy body up the stairs to bed. Yes, there have been more than a few times when I have had to sit on the sidelines and watch, feeling pride in her abilities and resentment about mine in equal proportion.  

But I have chosen not to focus on those limitations, and it is for one reason only: because she doesn’t see them. To her, I am just Mama. I am not the Mama who can’t, I am the Mama to who can – and does. We read together. We snuggle. We do crafts. We go shopping. We go swimming. My favourite tradition between us is one we’ve had since she was barely able to appreciate it: our weekly girls’ night. No Daddy allowed! We choose a movie or TV show to watch, make some yummy food (usually Indian, since Daddy doesn’t like it and he’s out for the night) and we hunker down for some good, old-fashioned girl time. If you ever meet us on the street, ask to see the girls’ night dance. It will change your life. I promise.

Thankfully, my daughter has inherited my love of reading, which is another way we have can connect with one another. We go shopping together for books, spend many cozy bedtimes reading together, and have even been known to be found on the deck at our cottage, each with our noses buried in a book. When I was growing up, reading was a way for me to retreat into a world that didn’t include teasing and bullies. Now, it’s a way I can connect with my daughter in a way that my physical limits don’t play a role.

I always knew I would have more than enough love to give to a child. What I couldn’t have known before I became a mom was that my disability and the way we have to adapt to do things differently would actually be the fire in which our special bond was forged. It has changed my personal definition of what it means to be an involved parent. My job is not to go rock climbing alongside her. Mine is to love her enough and encourage her enough that she knows she can climb that wall with confidence all on her own. My job isn’t to run the race alongside her; it is to stand proudly at the finish line and cheer on her accomplishments so loudly my throat hurts afterwards. My job is simply to be there and to show her that, no matter what, I will be here when she needs me. I am the kisser of wounds, the mender of broken hearts. I am, in a word, Mama. And there’s absolutely no one else I’d rather be than her Mama.

I also couldn’t have predicted how having a Mama with special needs could have help foster my daughter’s keen sense of compassion. When she gets to the top of the stairs and turns around to extend a hand to help me, I know that in some small way, having a Mama with special needs has helped to shape who she is. And I might be more than a little biased here, but take it from me: She is pretty awesome. She is growing up with a desire help others whenever she can and to understand that all people—regardless of their abilities—are all deserving of respect. For that I am immeasurably grateful.

My dad often told me as I was growing up that there is no such word as can’t. Whenever I would get frustrated and say I couldn’t do something, he’d brush away the doubt with that one phrase: There’s no such word as can’t. Because of the spirit in which he and my mom raised me, I became an adult who focuses on finding ways to do the things she wants to do and does not dwell on the fact that perhaps my route to the finish line is a little different than other people’s. Motherhood has afforded me the perfect opportunity to thrust my dad’s words into action. Sure, there are things I can’t do in the traditional way, but there are no limits on the power of a mother’s love for her child, and I’m pretty confident that, if asked whether I’m doing a good job as a mother, my daughter would say with confidence that I am. And at the end of the day, if that’s the one thing Mama can do, I’m 100 percent OK with that.

 

Staci Rae is a life-long lover of words whose passions include reading, photography, and cheering for the Montreal Canadiens. She is a freelance writer based in St. Thomas, Ontario, where she lives with her husband, Geoff, their 9-year-old daughter, Chloe, and a stuffed bunny named Izzy, Read her website 3 Plus a Bunny or find her on Twitter, Instagram or Facebook
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