By: Jeri Burtchell
I’ve discovered that children born to people with chronic conditions are often the most empathetic and compassionate people I’ve met. You can give kids life lessons when you’re in the grocery store and see someone using a cane or a wheelchair, but nothing quite explains the real everyday hurdles like living with someone who has a chronic illness.
I have two boys. My older son, Mark, was 16 when I was diagnosed. The younger one, Alix, was just six months. Mark was your typical teenager: independent and active, with a big circle of friends and activities that kept him busy outside the house. By the time Alix was a preschooler, Mark had moved out to begin his own journey into adulthood.
It was like raising two “only” children, with one big difference – the second time around MS was calling the shots.
Alix never knew me any other way, so the fact that I used a cane, or occasionally needed a wheelchair was just normal to him. He’d sit in my lap and ask me to take him for a ride. He didn’t see me as different. Nobody whispered to him “it’s not polite to stare”. When he looked at me, he saw his mom and nothing more.
He’s a junior in high school this year, taking honors classes. Tonight we’ll be attending an award ceremony where he’s receiving a mystery award. He’s been an easy kid to raise. Never gets into trouble and is always around the house helping out. He’s cheerful and never complains no matter how much I ask of him.
Things haven’t always gone smoothly, though. When he was in sixth grade he was having a hard time. The transition to a new school with new friends was a lot for him to handle. When it came time to attend one of his band performances at school, I really struggled over whether I should bring my cane or not.
I didn’t want him to be teased for having a mom who was different, but neither did I want to fall down. Which would be more embarrassing to his middle school mind? I decided to let him choose.
We stood by the car and I whispered to him, “should I just leave my cane here and ‘wall-walk’ where I can?,” and he looked puzzled.
“Why would you do that? Don’t you need your cane?,” he asked.
“Well, I don’t want to embarrass you, you know, if the kids tease you because of this or something.”
He became really indignant at the thought. “Just LET someone say something, Mom! Nobody’s going to make fun of you. What kind of person would do that, anyhow?,” he asked.
I used my cane and he took my other hand, proudly.
That was just one special moment among many that made me see that having MS has not always impacted our family negatively. Do I wish I didn’t have it? You bet! Does Alix sometimes feel “ripped off” that he didn’t get the younger, healthier model of Mom than Mark did? Yep.
But we do what we must to live the best life we can despite MS, and in the process it has helped shape my son into a fine young man who I know will always wear his compassion and empathy like a badge of honor. It’s who he has become, and I’m proud to be his mom.
So for those who have small children and wonder how your MS will affect them as they grow up, take heart. I bet they will be amazing, too!
*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.
You are so lucky Jeri. My daughter was like your older son so she didn’t live with the MS like Alix did. When we found out she accepted it but didn’t live with it. She has compassion for me and understands why I cannot do things but it is different. She has two children of her own so she sort of lives with it now through her kids but it is different then living with it herself. She is good at helping her kids accept it. They understand why grandma cannot do something with them.
It is a hard lesson for some. I am lucky that my whole extended family “gets it”. They often have to remind me to slow down and remember the MS. 🙂