Thursday, March 28, 2013

Parenting is about finding what works

By Sarah Kovac

Ethan sat in my lap, snuggled against my chest, rambling on in toddler-speak about the stars out his window. The conversation lulled as he took my hand into his. At two years old, his hands were already larger than mine, and much, much stronger.

I was born with a rare congenital birth defect called Arthrogryposis. In the womb, my arms didn't move enough to develop proper muscle tone and the joints from my shoulders to fingertips locked into place.

Growing up, as I learned to eat, write, drive and live using my feet like hands, I didn't often wonder what sort of life I'd have. I felt like a normal girl, so why wouldn't I have a normal life? Only now do I understand how lucky and rare I am. I am a mother with a physical disability.

Ethan intently studied my hand, then his own. He flexed and extended his fingers, then tried to force mine to do the same; they don't. In despair, he sighed and looked up at me with his dark chocolate eyes. "It's not working," he broke the news. "It needs batteries."

I couldn't help but laugh at such a precious assessment, but it was the first time he'd really noticed that Mommy is different. I couldn't help but wonder what other questions would come, and whether I'd be able to communicate answers that he could understand. Answers I don't even understand.

A year has passed since that evening; Ethan is now three. More and more, he's asking me to play with him in ways that I just can't. To fly him around like Daddy does. To help him jump high in the air. To drive his play cars fast across the floor. My replies range from, "Mommy's arms aren't strong like Daddy's," to "Mommy can't move the car fast like you. Wow, you're so fast!" to "Hey, look at that interesting (distracting) thing over there!" I'm sure I don't always answer perfectly, and sometimes I don't have the emotional energy to answer at all, but he's beginning to understand that he can't expect me to move like everyone else. He high-fives my foot and places things between my toes when he wants me to hold them. We play Pat-a-Cake with our feet.

I'd be lying if I said I'm not nervous about the future. What if his friends at school pick on him for having such an unusual mom? What if he's put in a position to choose between mocking me and defending me? What will he choose? Will he be bitter over the softball games I can't play with him?

Only time will tell.

I do know that the difficulties we face as a family will make him a more compassionate and stronger person. I know that tolerance won't be much of a struggle for him. I know that it will all work out in the end.

But even now, we struggle to find our place in society. My fears and insecurities have often been enough to hold us both back. For Ethan's first two years, I rarely took him out by myself, even though I was completely capable of doing so. I cringed at the concerned looks we'd get, the kind-hearted strangers stepping in to "help" me, the eyes boring into the back of my head when I fumbled with the baby wipes or crackers. Instead, I'd wait until my husband got home from work and make him go out with us. I'd leave everything to him and risk looking like a detached mom rather than an incompetent one.

Ethan, bless his sweet little heart, thought nothing of the speed with which I did things or the number of times I had to try again. He knew I was capable, I knew I was capable, but in this time when parents with disabilities fight to keep their own kids, I was scared to let people watch me struggle. So I didn't.

Then one day, I let the scandal loose. I uploaded a video to CNN showing how things are for us. I recorded every minute of my struggle with Ethan's snap-up onesie. I showed my twisted little arms and talked about my disability. It was both terrifying and liberating. It was a confession: "Hi, I'm Sarah, and I'm a parent with a disability."

The reaction I received blew me away.

We were headline news on CNN. My inbox flooded with messages from wonderful people like me. Though few had disabilities, we connected. Through pain. Through struggle. Through our need to admit: "I'm not perfect!"

In the time since my headline confession, I've eased my way into society, as a mother. As an imperfect, flawed, struggling mother loving my child more than my pride. After all, isn't that the way he deserves to be loved? Doesn't he deserve to be shown that trying again, ignoring the stares and working through anxiety are important and good and doable? I'm not interested in teaching him how to achieve perfection on the first try.

As a parent with a disability, I have the unique ability to model perseverance, determination and resilience for my children frequently and in tangible ways. I have the ability to show what a person can work around with some effort and creativity. I have the ability to demonstrate what it is to be at peace with my limitations, and find purpose in spite of (or maybe in the midst of) them.

Yes, my disability will create all manner of hurdles for us, but also a world of opportunities that the average family may never be afforded. Even now, as we await the arrival of our second baby in August, I'm nervous about how well I'll adapt to two little ones with my limited physical resources. But if I've learned anything from three years of motherhood, I know that my limitations never turn out to be as big as I anticipate, and children have a way of yanking me out of myself, out of my fear, out of my "I can't" state of mind.

And as my children grow to understand how different Mommy is, may they not only recognize those parts of me that aren't working, but also the beautiful characteristics their trust has pulled out of me.

May they see all the things they've brought to life in me, all the things that work and work well. Because of them.

Sarah Kovac is a public speaker, blogger and author who lives near Kansas City with her husband Adam and son Ethan. Her first book In Capable Arms: Living a Life Embraced by Grace can be pre-ordered.


Dear Sarah, I know of your concerns of the future. I think that way of my Jesse with his speech patterns. But all i can think of to say to you is some how some way the situation you are in, You will find a way to accomedate Ethan's wants To divert him into doing something else. Then rather the things you can not do. I don't know this makes it easier. But you are a gift from God, And your son knows this!Most Importantly He loves you! As you are! And has a good daddy to fill in the blanks, of what mom can't do! :)

Melissa, thanks for reading! Yes I'm unspeakably grateful for my husband's presence and support.

Your post made me smile in so many wonderful ways, as it reminded me of my thoughts, dreams and reality of being a Mom with a disability while raising my daughter. During her school years my mind was prepared for all questions that I thought I would hear from her, and her peers. But the tough ones never came. I remember my 4 year old nephew asking me, "Auntie, who hammered your hands?" I sure wasn't prepared for that one. But I answered it the only way I knew how, truthfully. He's now in his mid 30's and we still laugh about it. Then I remember the day I took my daughter (who is now 31) to Kindergarten and she asked if she could bring me as her topic for 'Show and Tell'. On her special day she explained to her classmates that she was given a very special Mommy. Then she proceeded to elaborate on how my hands don't work like everyone else's Moms, told them how I did things differently and that I used a power wheelchair because my feet and legs were special too. She asked if anyone had any questions, which she answered so well! It was a beautiful experience that grew even more inspiring as the years passed by. I had many challenges, but they became the super glue that has bonded us closer than I could have ever dreamed. I am now a Grandmother to her 10 month old daughter, who I now have the joy (and new challenges that come with my age) but I know we will be squeezing out our special glue for her too. You are an amazing woman who I hope to be able to meet one day at one of our AMC Conferences. Thank you so much for sharing your life with us, you never know who's life you will change, even if only for a moment. Congratulations on your book, I can't wait to read it! :)

Kathleen, thanks so much for reading. Your comment encouraged me in so many ways! It's refreshing to hear from someone who's been in my shoes. I feel like I'm the only one sometimes! And I hope my experience is similar in that the questions I so dread never come. Thanks so much for sharing your story!