Different – But Not

In Features, My Piece of the Sky, Opinion by Amy Blanchard

The articles I write for Audacity revolve around the issues I face as a disabled woman with spina bifida raising a healthy, active toddler.

I will also take this space in the future to write about my experience with pregnancy. But so far I’ve primarily written about the “happiness and roses” of parenthood – the joys and wonderment I experience everyday with my daughter and husband. Well, this month I thought I’d get a little more real.

As Ella creeps ever closer to the Terrible Three’s (the new Terrible Two’s, I’ve been warned), her little independent spirit seems to be kicking into overdrive.

It is in these instances of high-volume feistiness and all-out stubborness that I realize so clearly what I’m not able to do for her because of my disability.

I pride myself on all that I am physically able to do in terms of Ella’s care, but there are certainly the occasional issues that arise where I just cannot physically do what she needs and/or wants of me.

When Ella runs from me or asks me to carry her someplace, it both frustrates and saddens me that I cannot do what other able-bodied moms out there can do for their children everyday.

These are the times I feel more “different and disabled”, and less like a “typical mom”. But these are also the times when she and I both learn valuable lessons in how to best deal with each other and understand each other’s needs.

Take simple car trips to Nana and Papa’s house. Ella and I have gone together to visit my parents on several occasions. And sometimes I’ve made the conscious decision to not have her wear her “walkies ” during these trips.

I reason that all we’ll be doing is going straight from the car into their house – so what’s the big deal? Well, on at least a couple occasions, Ella has started to run from me as soon as I set her feet down on the ground.

What did I do? The only thing I could – I yelled for her to stop and lightly tackled her down to the ground, landing softly in the grass.

Firmly grasping her hand, I managed to get her into their attached garage, where she was then freely able to walk herself towards my parents’ kitchen door.

Thank goodness that worked, and we both didn’t hurt ourselves, because I could not have run after her if she got away.

Now I know to have her always wear her walkies, enabling me to constantly have a hold of her and keep her close to me.

That’s not to say that she and I haven’t run into trouble even when we are following the “rules”. On one visit to Nana and Papa’s house, with Ella’s walkies firmly fastened around her, we made it safely into their garage and almost up the stairs to the door before I lost my balance. This made us trip over each other, landing in a heap on the hard, cement, garage floor.

I mildly sprained my wrist, and Ella was really scared, but, thankfully, both of us came out of this none the worse for the wear. My mom was probably more scared than either of us combined, as she didn’t know who to tend to first when she heard us fall – her daughter or her granddaughter.

But through this experience I learned to be as careful as possible when I’ve got Ella around, and Ella learned that she needs to go a little slower when walking with Mommy.

I’ve also experienced a time when Ella didn’t want to walk with me at all. It’s pretty funny now (heck, it was pretty funny the next day!), but at the time it was one of the most frustrating experiences I’ve had with her yet.

It was last winter and I was home with her on one of my typical Mondays off. But on this particular day I had a meeting to attend in a town 45 minutes from my own.

I needed to get Ella to my mom’s so that I could continue on my way. But when I opened our kitchen door leading out to the driveway, Ella stopped dead in her tracks. She would not step one foot into the freshly fallen snow collected on our kitchen stoop. Even though it measured not even 2 inches deep, she just wouldn’t budge.

I had never realized, until this instance, that my husband always carried her to and from the car. She had never experienced walking in the snow before. And she was scared.

I kid you not when I say it took me more than 30 minutes get her the six or seven feet from our kitchen door to the car door. It took a little lifting on my part, a lot of clearing away of the offending snow, and all the encouragement in the world for my brave little girl to make this momentous trek.

And once she did she was so incredibly proud of herself. It was great to see, but what a fight in getting there. Man.

That next weekend, my husband and I made a special point of bundling Ella up for a good, old-fashioned romp in the snow. We played it up so much, dressing her snugly in her warm, pink snowsuit and boots. She was thrilled to go outside. And this time it was the bigger chore to get her back in the house.

Naptime has caused some occasional problems as well. Ella is usually very good about knowing when it’s time for her nap, and she will climb the stairs with me up towards her room, happily saying “night-night” to whomever is around to hear her. But sometimes, if I don’t remind her on our way up the stairs that we need to go to straight to her “pretty room” bedroom, she’ll turn and run into Mommy and Daddy’s room instead and climb into our bed.

As I cannot carry her, I’ve had to use my well-practiced skills of bribery to convince her to come with me to her room. And most of the time, thankfully, I’ve been successful. But on occasion my husband will have to ultimately intervene by carrying her, sometimes kicking and screaming, to where I need her to be.

I try to turn to him only as a last resort, though. He is very good about letting me do what I normally do with her – handling things the way I normally do. I’m just thankful he knows when enough is enough and he comes to help me out, even if I don’t always ask for it first.

Yes, there are definitely things about being disabled that make it difficult to raise a child. Mainly, not being able to carry her can, and has, created some very trying, not to mention potentially dangerous times.

Luckily, every incident Ella and I have encountered so far has been handled without injury and with a big lesson learned. We must always plan ahead, take whatever safety precautions are necessary, and know that it’s okay to ask for and receive help from others to make things happen as smoothly as possible.

In fact all parents, able bodied or not, would be wise to abide by these same principles as well.

I guess I’m not so different after all.

Are you a parent with a physical disability? Share your experiences with us. Email nathasha@audacitymagazine.com and join the Online Forum.