Parenting with a chronic illness like Multiple Sclerosis offers it's own challenges. When MS Warrior Julie Stamm became a Mom, she didn't want her son to view her with pity. She began making a game out of her disabilities and bad days, showing her son that a disability can actually be a superpower.
She turned this passion into a book for children, "Some Days We..." which was self-published, but recently picked up by a publisher! MS Warrior and Actress Selma Blair even read this book to her child!
In this interview, Julie offers insight into her life as a parent with MS and with that comes a lot of inspiration. Here's the interview, but check below for Julie's tips on parenting with MS and chronic illness:
You can catch the first part of Julie's MS story in the first half of our video interview here. We had a little technical hiccup, so it was broken into two! The first half goes more into her diagnosis story. Julie was kind enough to send us a list of tips for parents that you can view below as well!
Tips for Parenting with Chronic Illness
1) Journal. When my son was first born I created a 'Letters to Jack' Google doc for him to have when he grows up. I write him whenever something developmentally important happens, like his first words, first steps, first booboo, etc. but I also use it as a tool for him to eventually have a glimpse of the obstacles we have faced and overcome together.
2) Listen. What is important is that those days that I call 'cry myself to sleep days' turned out to be great adventures for my son. He saw the events differently and by truly listening to him, he eventually made me see those days differently as well.
3) Never let your illness be their excuse. This disease is a burden that you have to battle. Giving a child or even an adult an excuse to feel bad for themselves is not something I feel should be given. You are fighting and doing the best you can. Love is never in short supply so focus on making your children kinder, more empathetic, and resilient instead of giving them an excuse to give up. Turn your battle into your child's empowerment.
4) Rest. EVERYONE needs a break with or without a chronic illness. I think as an MSer, I always overcompensate to try and make up for my shortfalls. The reality is we all are overcoming something. Think of it as a marathon. You need to be able to go the distance.
5) Forgive yourself. We all have moments where we could have been more present, more patient, more involved. Learn from those moments and try harder next time. This will repeatedly happen and that is ok. It is about trying to be the best you and forgiving yourself for those moments that you might have been able to handle better.
Want more stories like Julie's? Check out some of our MS Warrior interviews on our YouTube channel.
*Disclaimer: We do not give medical advice. Please speak with your doctor before making any changes to your treatment plan.