Julie Stamm was diagnosed with multiple sclerosis in 2007, and since then, her life has seen plenty of changes—but none as significant as the birth of her son, Jack, four years ago. Stamm, 40, of Brooklyn, NY, has learned to navigate the joys and challenges of motherhood with a chronic condition. One of the biggest hurdles: A lack of information on how to help children learn about MS. Hoping to educate others in similar circumstances, Stamm decided to write a book of her own.
Some Days We… is a children’s book about a mom and young son navigating her MS together. Told from the child’s perspective, the book is based on Stamm’s experiences with Jack. We spoke with Stamm about the book, her life as a mom, and what Jack has been able to teach her.
Interview has been condensed and edited for clarity.
HealthCentral: Tell us about your journey with multiple sclerosis.
Julie Stamm: I was diagnosed in 2007. It took a long time to get diagnosed because I had just moved countries—I was in England when my symptoms began. At first, doctors just thought it was stress from traveling back and forth from a demanding job. But as time went on, I was progressively getting worse. Finally, after seeing countless doctors and not getting any answers, I was referred to a neurologist who did an MRI and figured out it was MS. I was so happy just to know what it was. Most people are depressed when they find out, but I was just like, "Now I know what this is, and I can do something about it."
HC: How did MS shape your life, prior to having your son?
JS: After being with my ex-husband at the time of my diagnosis, I ultimately decided to leave that relationship and focus on what makes me happy (the marriage wasn’t right for either of us at the time). It’s made things a lot more bearable and less of a weight on my shoulders because I stopped feeling like a burden for anyone else. Then I met my current partner, and we’ve been together for seven and a half years. He doesn’t see my condition as anything that’s holding us back, which makes me see it as nothing that’s holding us back, which is helpful!
HC: How has MS shaped your relationship with your son?
JS: Jack came along four years ago, and he changed everything for me. I have to allocate my energy just to focus on him, whereas in the past I could be a lot more selfish about what I did with my time. Now it’s all about being a good mom and making sure that he has the best life without worrying about what his mom can’t do.
HC: What has been the most challenging part of parenting with MS?
JS: It’s difficult not feeling strong enough sometimes. I’m on a children’s committee in the co-op where we live, and before COVID, we used to have all these parties. I had to coordinate the events, decorate every party, and I felt like I needed to do it in order to make sure Jack had the best possible life. I didn’t realize how tiring it was until coronavirus, which has slowed me down. Now, I’m learning to constantly re-evaluate situations and try to look at things through Jack’s eyes. Instead of feeling bad about what I can’t do for him, I look at how happy and grateful he is for the fun adventures we’ve had.
HC: What has been the best part of parenting with MS?
JS: Jack knows what MS is—I’ve talked to him about it, and he can read the book. But he doesn’t see it as anything other than me being his mom. I’m the only mom he’s ever known, so to him, I’m perfect. Every event in the book is based on a day that we lived together, and I asked for his opinion on how he was the day these things happened. For instance, one day when my legs were hurting and I couldn’t get outside, I scooted him around the floor of the apartment like a choo-choo train. In my heart, that was the worst day ever, but Jack thought it was a great adventure day. We incorporated that into the book because he thought it was fun, as opposed to a day where I was failing him.
HC: So you included Jack in the process of writing this book?
JS: Yes! Since he was born, I’ve been writing him letters whenever he experiences a milestone, like saying his first word or taking his first step. I wanted to write these down so one day he can look back and reflect on his childhood and how loved he was. Days that were hard for me, I wanted to explain to him. When I was writing the book, I went through about 300 pages of letters I’ve written to Jack, looked at the memories that were hardest for me, and wanted to see what he remembered from those days.
For instance, one day, sitting outside a children’s museum, I remember feeling so hot and my legs weren’t working, so I was like, "Let’s just sit and have a snack!" Inside I was heartbroken, and it was a terrible day for me. But now, every time we’re walking, Jack asks, "Snack break?" It’s a moment that he loved, even though I thought it was terrible. Knowing he didn’t see it the same way is pretty amazing.
HC: What has been the reaction to your book so far?
JS: All the feedback has been great, and we’re hearing from adults who are looking back on their childhood with a parent who had MS. I get the most beautiful messages that this represents the life they lived, and they wish their parent saw how great their childhood was to them. I’m surprised and proud that a lot of the reviews are from older people who had parents with MS, and I’m also happy with kids liking it and understanding it, especially kids that play with my son. Now these children understand why there are certain days that Jack and I do things a little bit differently.
HC: So, it can even be an educational tool for children who aren’t living with someone with MS.
JS: Yes. In the complex where I live, the feedback from other parents is that their kids get it now. There are birthday parties that Jack and I have missed because they start at 9 a.m., when I have medicine to do. But now these children can better understand that we sometimes have little obstacles, but that we can get through them. I hope it makes them more empathetic, because the truth is that every parent is dealing with something. Especially now with the coronavirus, everyone has to adjust to a new normal, but that doesn’t mean we can’t make it a positive experience in its own way.
HC: What does your son think of the book?
JS: He loves it! But I think he is over me giving out copies. We ordered a couple for us, then we distribute them to people we hope will help us spread the message. Every time someone sends me a picture and Jack sees them with the book, he runs to our bookshelf to make sure it’s not his copy. I think he’s nervous that someone is going to take his one copy of the book.
HC: What are you working on next?
JS: We’re already working on book number two, for older children. It’s extremely important that children have materials that help them be empathetic and kind, and just to be a good person. And that’s not just based on having a mom with MS. It’s about teaching them to understand that everyone has something going on. You just have to be kind and treat everyone as special.
You can buy a copy of Julie’s book, Some Days We… , on Amazon, Barnes & Noble, or wherever books are sold.