Perhaps one of the most challenging aspects of motherhood with chronic illness is helping your children understand what is going on with your body and encouraging acceptance about how your illness may impact them. How can you help them develop empathy about what you’re experiencing, especially if your illness is invisible? Where’s the line between being honest and making them worry? What’s the best way to address their concerns in kid-friendly language? This is a topic that will likely need to be an ongoing discussion in your family – and sometimes reading a book together can help!
My Special Butterfly: A Book To Help Children Understand A Loved One’s Life with Lupus
by Kelli Roseta
Joan Fanwick received a copy of this book as a gift from Mamas Facing Forward. She was not compensated for this review and all opinions are her own.
As a chronic illness sufferer who is also a teacher and caregiver, I find it can be hard to explain to my illness to children at times. My Special Butterfly is a great book to teach children about lupus, and start a conversation about why some days I struggle and some days I do not.
This book particularly spoke to me as a hobby of mine is butterfly gardening, but the irony is sometimes being out in the sun gives me a ‘butterfly rash.’ My partner finds my love for butterflies and reaction to being in the sun particularly funny when he first learned about butterfly rashes. Now he uses my butterfly to help show him how I am feeling even when I am reluctant to complain. Just like the dad in My Special Butterfly, my partner always steps up to help with childcare and entertainment when I need extra rest. It’s so important to recognize the difference a good partner can make in caring for children and making sure that even if I am not feeling well, the child’s routine stays as normal as possible.
A highlight of the book was when the children went to the fair and came back with butterflies painted on their faces to show their support for their mother. As a teacher, I recognize the need to explain hard things to children in a developmentally appropriate way, and I think this book does a great job, both addressing illness but not making it too scary. I would highly recommend My Special Butterfly for children ages 4-10.
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