Telling Children About MS: Author Julie Stamm gets personal about the disease

Guest blog post by Julie Stamm

My intention is not to make light of multiple sclerosis. It’s to make the adversities of a chronic illness lighter for children. My priority is being a good mother in the eyes of my son; that is all that matters to me. I need to know that I have given him the best life I can, despite my obstacles. We are only here for a short while, and I want my moments to matter.

I was officially diagnosed with MS in 2007. While I can date my symptoms back to 2001, it wasn’t until four years later that my symptoms became too unbearable to continue the life I once knew. What started out as numbness and tingling turned into a daily routine of waiting for my legs to wake up each morning. I was unable to fulfill my responsibilities professionally and socially. My life was ruled by the nearest bathroom and chair to sit in. I went from being someone who could walk effortlessly in high heels to someone who was always tripping and having balance issues – something that truly devastated me.

When my son Jack was born in 2016, my outlook on life shifted. I was no longer fighting MS for myself, but now I was fighting for my son. He gave my life a purpose I hadn’t known was missing. The first few months of his life were challenging. I was worried I wouldn’t get back to my previous baseline, and I haven’t. But what I have done is learn to slow down, listen to my body, and accept the bad days.

I decided to write letters to myself about moments that I wanted to remember due to my cognitive issues. In the entries, I would privately open up to Jack about how precious he is to me, how hard I’m fighting to be a good mother, and how much I enjoy our daily adventures.

After experiencing his love, I have shifted my perspective of life and what we should expect of ourselves. Regardless of ability, we all have things that make us feel insecure and inadequate, and how we handle those obstacles is what matters. I think we could all be more understanding and forgiving of our shortfalls.

I have always been entirely transparent with Jack about my diagnosis, and when he turned two, I began to search for materials to offer him support and affirmation that he isn’t the only child with a parent battling a chronic illness. I quickly learned about the demand for educational literature for children on diseases like MS. My partner Adam and I found that the materials were not explicitly geared for younger children and I didn’t want to communicate with sophisticated terms like ‘myelination’ or ‘relapse.’ I was determined to fill the hole in children’s education, not only for my son, but also for children and parents searching for positive and comforting materials to explain their days a bit better. 

Fast forward a year and a half, and I published a children’s book entitled “Some Days We…”. My book follows Wyatt and his Mom, Anne, as they navigate a chronic illness’s unpredictable obstacles. Written from the perspective of a young child, the beautifully illustrated book tackles the serious issue of parenting with a chronic illness. Wyatt and his mom, Anne, take the challenging moments and reroute them into positive experiences. It’s an exploration of the power of positivity, and the story reinforces the idea that with love and imagination, families can overcome anything.

So far, the recognition the book has received is moving and motivating. I look forward to holding my book in different languages and explaining to my son the impact he and I have made together. Creating meaningful memories with your children is always possible. It is about teaching them that they are resilient and loved, and are going to be okay, even if their version of ‘okay’ doesn’t look like everyone else’s version.

Like Julie, you can encourage your children to get educated and learn about the disease that impacts so many Canadians across the country. MS Read-a-Thon inspires kids to read as much as they can, all for an incredible cause. The rules are simple. Read whatever you like, as much as you can, until March 20. Children can register with their school (teachers, you can register your class) or individually. Best of all, by joining our quest, not only will you awaken a love of reading, but you will also be helping people who live with MS in your community. Learn more about MS Read-a-thon: bit.ly/37DDc2D

And for more information on Julie and her work, visit bit.ly/3snCwGR.