Because there are only a few books available that specifically feature a parent who lives with a chronic illness, we’re branching out to books that focus on other types of illness, books that focus on children with illness, and books that talk about feelings. Hopefully these reviews will help you determine whether any of these books might be a good fit for your family discussions!
Arthritis Is A Part of Me, Not All Of Me
by Jenni Rose
Amanda Matoic-Delai 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.
“Arthritis Is A Part of Me, Not All of Me” by Jenni Rose was a tough book for me to review. I understand that the gist of the book is exactly what the title of the book is saying, but the way the author wrote the book, on a page by page basis, is difficult.
It was a great book for kids ages 6/7/8, and really detailed the ins and outs of Juvenile Rheumatoid Arthritis (JRA). [Editor’s note: the term “Juvenile Rheumatoid Arthritis” has been replaced with Juvenile Idiopathic Arthritis. Click here for more info!] Denise, the main character and storyteller, was diagnosed with JRA at 2 years old.
She goes on to define the big words in the book, which is great for those 6-8 year old kids, but she didn’t describe what “inflamed” or “inflammation” is. Denise discussed her feelings a lot in the book, which I think is fantastic for kids to learn about feelings, whether from a fictional or nonfictional character. She also discussed being hospitalized and having surgery.
The problem I had with this book is that some of the pages in it have absolutely nothing to do with arthritis. Besides Denise being in the hospital for some reason due to her illness, it is entirely irrelevant to us, as readers, to know she saved a baby by alerting medical staff that the baby’s ventilator stopped working (I feel absolutely horrid even writing about this). I can only guess if the author was trying to convey that just because Denise has an illness that doesn’t make her less important or less of a human being, because she was the one who noticed something wrong with the baby instead of the staff.
Then we jump to Denise starting a new school, one with a non-inclusive playground, so she spends her recesses just walking around since there are no swings to swing on. Thankfully, a teacher sees Denise being sad and helped her play on some of the playground equipment. This teacher also has an invisible illness, so he can relate to Denise, which was a nice way of showing kids that even though they may have an invisible disability or illness, they are not alone; there are others, potentially really close to them, who also may need some extra accommodations too.
I did like the fact that the author showed Denise going to and being involved in school events, even if she couldn’t partake in the events, like when she went to the school dance in sixth grade. I also enjoyed Denise involving her parents by letting them know her fears; her parents jumped in feet first with helping her overcome her fears. I appreciated that the author made this a lifelong disease progression throughout the book.
We were able to learn that JRA is always there in your body, but sometimes it is really bothersome and other times it isn’t as bad. I loved how the parents of Denise always built her up, no matter her age. They showed her ways to work and manage her arthritis and taught her to be an advocate.
I did enjoy the ending of the book/last few pages of the book, where we see Denise advocate for herself while in college with her friends, and see her achieve her dream of becoming a teacher. I also love that the author made Denise a special education teacher, though I wish it were called something else. (Personally, special education brings up negative connotations for me, probably from a generational standpoint.) Overall, I wish this book would have went back to the author one more time before being published. With a few minor changes, I think it could have been made to be even better.
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