The Ups and Downs of Parenting When You Have AS

Talking openly about a disease is a way to be a positive role model for kids

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by Jemma Newman |

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“Ooh, my back hurts!” my 3-year-old son groaned, clutching it dramatically as he crouched on the carpet amid a pile of Duplo blocks and miniature cars. He glanced at me cheekily from under his long eyelashes, checking to see if I was paying attention.

“What’s going on, buddy? Are you hurt?” I inquired calmly, as I collected breakfast dishes from the table.

“Nope! I’m being like you and Dad!” he chirped, smashing some blocks with a zooming truck.

I was thunderstruck at his play-acting, though I didn’t let on to my son. That little moment made me acutely aware of just how much attention our children are paying to everything we say and do about living with ankylosing spondylitis (AS).

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Parenting when you’re trying to manage a painful or debilitating chronic disease is a tough gig. Both my husband, Dave, and I were diagnosed with AS within the space of a few years, as I’ve shared in my previous columns, including “When a Husband and Wife Both Have Ankylosing Spondylitis.”

I was first affected by AS after the birth of my second child, which meant I was caring for a 2-year-old as well as a newborn while trying to survive the disease’s pain and stiffness. My kids won’t remember the days before my AS diagnosis, and I’m trying my hardest not to let this chronic disease affect them in a completely negative way.

How AS is affecting my parenting

My kids notice everything about their environment and parents. They might not pay attention when I ask them to brush their teeth for the 10th time, but they’re definitely aware when something isn’t quite right. My mood. The way I talk. How I move. What I eat. How tired I am. It’s impossible to keep life and parenting the way it was before AS crashed the party uninvited.

My physical parenting abilities are definitely affected by AS. From daily movements, like leaning over a bathtub to shampoo my kids’ hair, to crawling around and picking up a thousand toys, there are days where I struggle through the pain, but try to keep smiling.

On other days, physical activities seem impossible. I can’t bring myself to scramble around playgrounds or push a swing, so I set aside energetic activities and have happy days at home reading books on the couch or setting up Play-Doh on the dining table, where I can enjoy the simple bliss of a comfy chair.

I admit that I’m doing many things I swore in a pre-kid era I’d never do. At a baby health-check appointment, the nurse saw my struggling inner perfectionist and said, “Do you think it’s better to let them watch TV and have a happy, relaxed mum, or do everything perfectly, but you’re a stressed mum?”

I’m proudly setting the bar lower, to save energy so I can enjoy the time I spend with my kids. I’d rather do fewer activities, but do them wholeheartedly.

Ways we’re thriving as a family

Though there are plenty of negative things about living with chronic disease, we’re determined to focus on the ways that AS is helping us thrive as a family.

By speaking openly about AS, we try to normalize the fact that many people live with diseases, disabilities, and hardships of all kinds. Having open communication means that we answer questions truthfully. Though we save truly serious conversations for adults-only time (I don’t want to scare my young kids), I think it’s important to openly discuss the fact that some days don’t go as planned, or talk about someone needing help. It helps us manage expectations and build trust.

We make family time a priority, with plenty of small but regular activities like playing Frisbee at the park and having dinner together as a family every night. I love our little routine at dinner time, where we ask one another, “What’s your favorite thing that happened today?” I’m always delighted by the happy ideas that are voiced.

Building resilience is crucial for our children, to help them manage the stresses of life. When we’re talking about AS in front of them, I try to balance the challenges with a discussion about how we might be able to solve a problem. As they see Dave and I tackling our health issues with positivity, strength, and love, I hope they see resilience and problem-solving in action and will be able to use those skills in their own lives someday.

We can’t stop the difficulties of living with chronic disease, but I hope we can balance them for our children by arming them with compassion and resilience, as well as filling their lives with examples of love and care.

Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.


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