Having been diagnosed with multiple sclerosis (MS) in 2007, the Brooklyn, New York, native thought her condition might get in the way of successful parenting. However, “three and three-quarter years” later, Stamm has not only learned a lot herself about raising Jack while she also contends with the effects of MS, but she has also self-published a book sharing some of those lessons learned.
Early Decision Not to Hide Her Multiple Sclerosis
From the very beginning, Stamm made the decision not to hide the fact that she had MS from her son. “I have a lot of friends with MS who have children, and they didn’t want to tell their children, and I never really understood that,” Stamm says. “I wanted to be open and honest with Jack. I wanted him to grow up with an empathetic heart and know what he’s actually facing.” Stamm began to look for books and educational materials that would help her best explain her medical condition to her young son. What she found did not bring her solace. “I started looking for materials and reaching out to all of the organizations that give out things to read,” she says. “But it was all mostly geared towards teenagers, and it was still scary stuff.” As an example, Stamm quotes from one such book, “’Mom yelled at us while she was making dinner because she has MS.’” That wasn’t the way she wanted to present her condition to her son. The mother’s anger, she says, “may have nothing to do with MS. The mom may have just been having a bad day. You’re blaming that behavior on the MS. It all seemed very angry, and kids can’t relate to it. You have to look at the positive side of it. If you give kids an excuse to complain and say it’s your fault, they’ll use it. The materials are apologetic, and I’m not apologetic at all about my MS. This is my reality.” RELATED: Share Your Tips on Parenting With MS on MS Tippi
Letters to Her Son Lead to a Book
When Jack was born, Stamm opened an email account for Jack and began to write him letters. The letters were meant to help Jack understand when he got older some of the reasons Stamm wasn’t able to do certain activities with him. In the back of her mind, she thought the collection of letters might make up a book for adults sometime in the future. But after showing some of the letters to her sister and some friends, they encouraged her to write the children’s book she had been looking for but could not find. Knowing that she couldn’t be the only person faced with having to explain chronic illness to her child, Stamm got to work writing. The result is the book Some Days We…, with illustrations by Sean J. Laven, about a fictional mom, Anna, and her son, Wyatt, as they make the best out of daily activities than can be challenging for those struggling with a chronic condition such as MS. The book is based both on those early letters and on conversations and experiences she had with Jack as he got older.
A Mother Sees Failure; a Son, Adventure
When Stamm started to talk to Jack about some of the events she wrote about in the letters — times she felt like a failure as a parent for not being mobile or for struggling with the summer heat — she had a revelation: “To me, these were my worst moments,” she says. “But to him, they were all an adventure. He didn’t see it the way I saw it at all.” One of the scenes in Stamm’s book is based on a typical outing with Jack: The mom and son in the book are sitting on the steps of the museum having a snack as other kids run around, engaging with their parents. “Wherever we go, we have sitting breaks and a snack because I can only walk a few blocks,” Stamm says. “We went to the children’s museum and sat on the steps. I gave him a snack so that I could take a break from walking. To me, it was sad because every other kid was running around doing something. But he was just happy to sit with me and have a snack. He remembers us having fun.”
A Doctor Helps to Change Her Perspective
A conversation with her doctor also helped her understand that how she spoke to her son made a difference in how he viewed their experiences. “When I was sitting, I’d always tell Jack, ‘Help Mama up,’ even if I didn’t need help. If the day ever came when I needed help, I wanted him to be ready for it,” says Stamm. But her doctor told her, “Don’t use the word ‘help.’ Say, ‘I need strong Jack’ instead. ‘Come here, let me see your muscles.’” That change “really changed the dynamic from me needing help to him being an empathetic person who wants to help, even if it’s holding a door open for a stranger,” says Stamm. Once Stamm understood that subtle difference, the world became their playground. Now, finding the bathroom first at the supermarket or drugstore became a game they could play. Going on “air-conditioning missions” became a team effort.
Hopes for Changing Others’ Perspectives on Chronic Illness
Jack has grown to love his mom’s “magical stick,” the walking stick that doubles as a magic wand to cast spells. “Someday, maybe I can create walking sticks that are more fun for kids,” Stamm says. “Wouldn’t they be so much more fun for kids if they were light sabers?” “If you haven’t experienced chronic illness, you might look at these stories and think they are sad, but it’s not a sad book at all,” Stamm says. “When Jack was born, I had so much guilt. Was this the right thing to do? I felt really bad that I wasn’t going to be able to give him everything. But then I thought, well I didn’t have everything growing up. I’m going to give him love, and that goes a long way.”
