Parenting With Chronic Illness Is Hard — So I Lie

Amy Baker avatar

by Amy Baker |

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“Hey, Mom, can you play with me?” my son, with his boundless energy, asks me enthusiastically, his eyes brimming with excitement. My heart is whole, and for today, I am still his favorite play buddy.

Anyone with a chronic, debilitating illness will understand the following few words. “Sure, honey, in just a minute. Momma needs to get her superhero energy back up.”

A few minutes pass, and I take a deep breath, get up, and it’s playtime. Where does this kid get all of this energy, and can I please have mine back? He will turn 10 in February, and his favorite game to play is one he has affectionately titled “Mommy.”

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While many would hear the word and assume it will be a quiet, relaxing game, “Mommy” is a game of physical skill. My son and I square off. We stare intently into each other’s eyes. One of us is going down! Chances are it’ll be me.

We begin our wrestling match. I am running, laughing, dodging my 9-year-old’s advances. Whew, I am tired. I feel like we’ve been playing forever. I glance at my clock. Oh, it’s only been five minutes.

How can I possibly stop now? My body wants me to, but he wants me to keep going! Am I out of shape? My body sure feels like it is. But my son is having so much fun. I can’t stop just because I am tired.

I tickle him. His squeals of laughter warm my soul. But he challenged me, so now I must lay down the law. While tickling my son, I tell him to say, “Mommy is the queen.” He and I are laughing. I tickle him right under his armpits, and he bursts out, “Mommy is the queen!”

For a brief moment, I will savor the sweet taste of victory.

My body is screaming at me, but why? Why are you yelling at me? Let me play with my child just like other parents play with theirs. I want to go out and play ball. Riding a bicycle is one of his favorite things. I can ride a bike, too. But my bike-riding ability comes with a recuperation period of at least 24 hours. Such is the way with parenting with chronic illness.

My son has seen me sick before. He has seen me through some of my worst flares, in fact. I try my best not to let him see me cry. He has seen me smile while I am in extreme pain. And he has witnessed me try to make his breakfast, lunch, and dinner when I could hardly move.

He instinctively knows when I am hurting. But I lie to him. Yet somehow, he always knows. Most of us chronic illness patients become very adept at lying. We don’t like to call it that because the word lie has negative connotations. No one wants to be called a liar.

I often wonder if I am teaching my son the right thing. Instinctively, I don’t allow myself to crumble under the weight of my illness. I do my very best to push forward. But I lie.

One of the most important values I have tried to instill in my son is not to lie. Your word is your bond, I tell him. The only thing he will have if life strips him of everything in this world is his word, so it’s important to be honest. Even when it hurts, tell the truth, be honest. But I lie.

I lie. But in my mind, I am trying to teach my son that no matter what setback we have, we can push through. No matter what disappointments, and there will be many, we can keep moving forward. Life will hit harder than we expect. We all get knocked down. But what matters is how many times we get back up.

I try to instill in him all of these little gems, which were taught to me growing up. Push through, you got this. Keep it moving, you can do this. Yet, I still lie when he asks me how I’m feeling. I lie and don’t tell him the severity of my illness.

To me, it is too much to put on his plate. I will not allow my son to surrender his youth to worrying about his mama, so I lie.


Note: Scleroderma 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 Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.


lenore spelbring avatar

lenore spelbring

Thank you. So well said !!

Amy Gietzen avatar

Amy Gietzen

This article hits a place in me like no other article I have read before. I babysit and I understand completely the love of little ones and the fight to push past the point of pain to have tiny moments of joy and to hear little squeals of laughter from the ones we love most. Thank you for writing about this.


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