If you've been following me, you may already know that I have a history of chronic illness. COVID wasn't kind to me, and it left me with functional neurological disorder, postural orthostatic tachycardia syndrome, and small fiber neuropathy. These are all conditions that will probably never go away, but I'm working toward improved symptom management.
Living the chronic illness and disability life everyday, I worry about balancing this part of my life with parenting (as well as partnership with my spouse). Before I became sick, we already knew we would have to prepare our children for people who might target them for having two moms or for having parents in an interracial relationship. Adding chronic illness to the equation means we will also have to prepare them for negative portrayals of disability and chronic illness.
Living the chronic illness and disability life everyday, I worry about balancing this part of my life with parenting (as well as partnership with my spouse). Before I became sick, we already knew we would have to prepare our children for people who might target them for having two moms or for having parents in an interracial relationship. Adding chronic illness to the equation means we will also have to prepare them for negative portrayals of disability and chronic illness.
Image Description: The cover of the book, Some Days: A Tale of Love, Ice Cream, and My Mom's Chronic Illness. A small boy and his mother (both Caucasian) walk through a city park. The little boy is skipping while his mother walks using a cane. They smile at each other. Fall leaves dance at their feet and trees with orange leaves stand in the background under the shadow of tall apartment buildings.
Credit: Image taken from Amazon Book Listing
Living the chronic illness and disability life everyday, I worry about balancing this part of my life with parenting (as well as partnership with my spouse). Before I became sick, we already knew we would have to prepare our children for people who might target them for having two moms or for having parents in an interracial relationship. Adding chronic illness to the equation means we will also have to prepare them for negative portrayals of disability and chronic illness.
I wanted to be proactive. Adding the book, Some Days: A Tale of Love, Ice Cream, and My Mom's Chronic Illness by Julie A. Stamm, to my library was one step. Some Days is a sweet story about a little boy whose mother has multiple sclerosis (MS). The book shows the reality of physical limitations in an age appropriate way while still giving it a positive spin by showing all the ways this mother and her child find ways to enjoy time together.
One of the real gems in this book, for me, is the way it shows dynamic disability. If you're unfamiliar with this phrase, dynamic disability refers to disabilities that impact a person differently from day to day. In this case, sometimes the mother uses a cane, other times a wheelchair. Sometimes she spends the day on the couch, other days, she can scoot across the floor with her son. This beautiful representation of dynamic disability shows both the way it can fluctuate and the ways people work with their bodies to continue engaging with the world.
I look forward to reading this story with my child when he's old enough to understand the message. I want him to understand that the pain my body puts me in doesn't stop me from loving him or from spending time with him. I want him to feel comfortable with the ways I am different from him and Mommy. I want him to join me in finding creative ways to enjoy our time together. I want him to feel confident that I, as a disabled, chronically ill parent can love, support, and take care of him. I plan on using this book as a tool for communicating these things to him.
Learn more about this book and its author on Julie A. Stamm's website.
If you would like to read this book, here are a few places to find it:
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