As you all know, the past few months has brought MS relapse, change in medication, and lots of learning how to talk about those things to our home. Our discussions about my MS with TJ, and now Jacob, too, have always been open and honest, and we always try to answer any questions he has in the most age-appropriate way. It has been a challenge, though, and a frustration of mine that there are not a ton of resources available through the MS Society or other organizations that are geared towards young women and mothers of young children with MS.
When I connected with Julie to talk about her book Some Days We…, I knew it was exactly what I had been looking for. Julie is a fellow MS Mama, and wrote this book specifically for children around TJ’s age. The first time I read through the book, I cried. It described so many of our days so perfectly. Julie’s words are so thoughtful, age appropriate, and comforting. We’ve read it countless times already and I know it will be a staple for years to come as we start to have conversations about my MS with Jacob, too.
My second treatment week of Mavenclad went as well as it could have with minimal side effects and promising signs that it’s working. On one of the days right after I finished the week of treatment, I was particularly tired and experiencing a bit of head fog, and TJ was so in tune so my symptoms, as he always is. He came over to me and said “Mama, are you feeling wobbly?”, which is from one of the pages of Julie’s book. I can’t tell you the comfort I felt knowing that he is starting to understand, as much as an almost-3-year-old can and should understand, and that he has words to name what he sees.
One of the best things about the MS community is the connections we make, and I am so grateful that Julie and I have connected. She’s kind, so thoughtful, and so empowered to affect change for mothers with chronic illness. Please be sure to check out Some Days We... and share it with any families you think might find it helpful!
xo,
Stephanie
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