How MS Taught My Son a Life Lesson

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.

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Parenting with MS

By Matt Cavallo

Watching my oldest son, Mason, turn and walk into Kindergarten for the first time sent a flurry of emotions through my soul. I was feeling both proud and incredibly sad knowing that my baby was now a schoolboy. The sadness came from deep inside remembering back to how hard it was for my wife to conceive due to issues I was having as a result of my Transverse Myelitis and MS.

The pride came from thinking back to a childhood friend. When I was in Kindergarten, I had a friend in my neighborhood named Conner. His mother had Multiple Sclerosis and she was confined to a wheelchair. Even now, I remember Conner’s strength and the sacrifices he made as a five year old to care for his mother.

When I was diagnosed with MS, my biggest fear was that I was not going to be able to be the dad I had always dreamt of being. Deep down, I didn’t want my child to have to care for me in the way that Conner had to care for his mom. Now, eight years after my initial diagnosis of Multiple Sclerosis, I proudly walked my Mason to his classroom, hand in hand.

As he let go of my hand and I watched him walk into a new chapter of life, I knew that his understanding of the world was going to grow each and every day. With his new understanding of the world, comes a new fear. How do I explain to him that his daddy is different from the other dads? How do I tell him that I have a neurodegenerative disease and that the big, strong guy he knows might not be that way forever?

As a young dad with a chronic disease, I have been looking for a way to talk to my boys in words they can understand. Especially for Mason who now has more questions than ever before. One of this resources that I have found in my search is, Daddy’s Story: An Introduction for Younger Children to Learn about a Parent’s MS. This is an illustration book for younger children that helps explain MS in words they can understand (don’t Matt and sonworry, moms – there is a Mommy’s Story too). With this resource, I am able to have a conversation with my boys and answer the questions that they have about my condition.

Knowing that there are resources to help me talk to my kids about my MS in a way that they can understand has helped to mitigate my fears and focus on the pride I have in raising two people who are loving and caring individuals.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

 

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