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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Comments

  • Jeri says:

    Hi Matt, I can completely relate! I was diagnosed when my youngest was 6 months old. I had my worst years, struggling on cane or walker (and even in a wheelchair for a month at a stretch when things got bad) during the years he was in elementary school. It was hard to see him run and play in the back yard and not be able to do that with him.

    But I discovered something unexpected and wonderful… he is now 15 and has grown up to be the most compassionate, empathetic, caring person I have ever known. I am honored to be his mom. I think, because he has had to deal with my MS, that the exposure to chronic illness has formed a lot of his values as a person.

    Parenting is hard even when you are young and healthy. I have no doubt that you are doing a great job. Just the fact that you went in search of tools to help them learn about MS shows you care. That’s more than half the battle.

    They will grow up seeing their dad be a “giver”–someone who shares all their knowledge and time to help others also battling this terrible disease. And that will be the best tool you have in your toolbox for teaching them to be quality adults. You’ve made a great start!

    Congrats on the blogging here, Matt! You’re a perfect fit.

    • Matt Cavallo says:

      Thank you Jeri! I really appreciate your feedback and I am glad that you enjoyed the blog. It sounds like you have raised a wonderful 15 year old. Hopefully, I can have the same successes with mine 🙂

  • Beth says:

    I can relate on many levels. My daughter began Kindergarten last week. I am grateful I can now rest while she is at school, but I miss her a lot.

    • Matt Cavallo says:

      I know Beth! It is so tough letting them go. Maybe it is the MS the makes me a tad sentimental, but I wish I could slow down the earth’s rotation and enjoy more time with him being small. Hate to sound cliche, but it goes too fast.

  • mandy says:

    I know the feeling.. I was diagnosed 2 years ago, and a single mom of three active boys. I have learned to never take the days without pain and fatigue for granted. My oldest turned 18 this summer, and I’m super proud to say we learnes to surf together. Sometimes the small things are the best things.

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