Hidden Trials: Parenting with a Disability

True confession: I am writing this post from my couch, in my PJs at not-very-late-in-the-day o’clock. I am highly medicated.

I’ve been loath to write about parenting with a health condition. It’s personal. It’s scary. It’s my biggest success and greatest failure. It’s one thing to change my life but another for my health to dictate my kids’ lives. I tried to keep those things separate, but the harder I tried the more they collided.

I finally embraced the changes that sprung from my disability. It’s not all good…but it’s not all bad either.

First The Good

My health saga began in 2011 with a simple surgery. My son was six and my daughter was five. Up until that point, I planned to model a balance between work, family and fun. Overnight, I went from being fiercely independent to struggling with basic function. Some days, I helped with homework and went to soccer games. Other days, I didn’t make it out of the house or off the couch. And occasionally I ended up on the side of the road throwing up with the kids buckled into the back seat.

If you’d asked me six years ago if my kids would be better people for my struggles, I would have laughed, then cried.

Then I started paying attention.

When I was sick, my daughter brought me stuffed animals. My son hugged and kissed me. And they never complained about missing things because I couldn’t get them there.

My kids aren’t perfect. In the last six years, they’ve been known to argue about bedtime, rules and where they should be allowed to go. But they rarely say anything beyond “I hope you feel better” if I have to miss a school function or a game, or they do.

When my kids were born, I worried about teaching them empathy and compassion, about instilling the idea that everyone is facing his or her own challenges. They live those challenges first hand. They understand that private struggles occur behind public smiles. They are more caring and open and empathetic than I was, even seven years ago.

Then The Bad, or at Least The Different

My kids will never remember me the way I see myself. They won’t remember the woman of their first years-someone with boundless energy, in constant motion. They see glimpses. I still love the outdoors and I think I’ve passed that on to them. They know I love new experiences; they don’t know that the pace of discovery has changed. They don’t know that considering medications, medical supplies and care limits our adventures.

While I’ve worked hard on acceptance over the last few years, I worry that my kids will confuse acceptance with complacency, mistaking my inability to do some things with my desire to do them. They won’t remember my career. My health has forced conversations about their place in the world. We talk often about following dreams, setting goals and working hard. For better or worse, my kids know I didn’t choose this exact path, but I’m trying to make my own best life. I’m still terrified that actions speak louder than words and that my kids, particularly my daughter, will limit their own options because I had to limit mine.

Rather than independence, we focus on interdependence and gratitude. Over time, my family, friends and community became the sweet to my life’s bitter. My kids have learned firsthand that life is better when we all help each other. Even though I miss my feisty independence, this journey taught us to give and receive help with grace.

And Finally, The Ugly

I want to ignore this section, but that would be such a lie. The fact is, my kids see me at my worst. They see me in pain, unable to move or to talk, unable to stand or write or function for hours (and sometimes days) at a time. I wish it were different. They wish it were different. But we’ve all learned to embrace the good and wait out the bad.

It’s not perfect, or even perfectly imperfect, as the saying goes. But it’s real. I choose to hope and believe that instead of instilling fiery independence, I’m teaching quiet strength and resilience.

Welcome to the Wild Adventure

My life is a dichotomy. I spent 20 minutes this morning sorting soccer schedules and 20 minutes scheduling space for a “Social Activism 101 for Kids” class. My daughter and I formed our own mother-daughter running club. It is our happy space and time together, except on the days that I can’t stand up to run. I spent the first 15 years of my career helping people stay active and the last five years managing my own health problems.

I thought at first that I would write about staying active with my kids. If I had a dollar, or even a quarter, for every time someone has asked how our family-and specifically my kids-stay so active, I’d be well on my way towards saving for an extreme vacation. What’s the best exercise for kids? (It depends.) How do I make my kids do a sport? (Good luck with that.) Why don’t your kids play video games? (They do sometimes, but don’t see the need.) How do I convince my kids to run with me? (They like it.) And the most common: How did I get my kids to be active? (I’m active with them.)

I have lots to say and years of experience, because yes, I have two really active kids in an active family. They ski, run, play soccer, swim, enjoy the outdoors, ride bikes and ask for active vacations. And I do it with them. Except when I can’t. How do I explain that my family has learned the value in activity because sometimes, I can’t stand?

This is the first time I’ve said out loud that I’m a person with a disability. Even after 15 years of working with people with disabilities, some of the most amazing people I know, I still don’t like to apply the label to myself. I want to be more. But the truth is, every person with a disability is more. And I believe that goes beyond the standard idea that “we are husbands and wives and friends and workers and writers and….” Yeah. Yeah. But I mean that we are more than we were before we “became” disabled or maybe before we became a parent or a spouse or a friend to someone with a disability.

Like the Grinch, my story made my heart grow three sizes, although maybe not in one day. I am more aware. I know what it feels like to belong to a group that doesn’t have the loudest voice. I am empathetic, knowing that every taunt and every stare at someone with an obvious physical disability could just as easily be pointed at me. I am kind. After going though something like I did, how could you ever wish pain or suffering on another human? I am strong. Yes, it’s true that I have physical limitations. But don’t discount the mental and emotional strength that come from coming through a challenging time, from learning to advocate for yourself or your friend or your child. And sometimes, I’m angry. I’m Pollyanna at heart, an optimist through and through, but that doesn’t make me blind to my own losses, or to the losses and hurt of other people.

It took the last year, the divisions I’ve seen in my family, my friends and my country to decide to stand up and stand out. It took watching a candidate for President make fun of a disabled reporter, a reporter who I’m willing to bet works harder than most to do his job well, to show that he is smart and capable and more. It took a rise in hate crimes and a philosophical Continental Divide to realize that if I plan to Be the Good, first I have to be honest. Because when that reporter was mocked, I bet not one of my family or friends thought of me. And maybe if they had, they would have been just a little more horrified, just a little louder.

So here I am, with the two halves of my life colliding. I’m choosing to tell my true story. How do I balance the two things I find most important, and how do I pass those values on to my children? I want them to live an active life, one filled with family fun, laughter and wild adventure. While they are on that adventure, getting buffeted in ways they didn’t plan, I want them to be aware and empathetic and kind and strong. And yes, when they see something degrading or hurtful or dangerous to those who have a quieter voice, I want them to be angry.

I choose to teach my kids that they can be athletes and scholars and activists and adventurers. They can be more. We can all be more.