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.

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