I bought Ghosts because it was Raina Telgemeier’s latest book, not realizing that I would have a deep, emotional connection to it. My fifth-grade students, my daughter and her third-grade friends and I have loved her semi-autobiographical Smile and Sisters. This crazy thespian also especially related to Drama. I also enjoy Raina’s graphic novel re-imaginings of Ann M. Martin’s classic The Baby-sitters Club series, a favorite of mine growing up.
The main character of Ghosts, Cat, has a little sister, Maya, with Cystic Fibrosis (CF), a disease which affects 3,000 Americans and is genetically handed down through generations of families. Families like mine.
I first heard of CF when a routine blood test when I was pregnant with my daughter came back with a red flag. I remember a nurse saying, “We’ll need your husband to give blood so we can see if he carries the gene before you start to panic.” Too late. It was an anxious few days as we waited for the blood work to come back from the lab. We rejoiced when it was clear that my husband is not a carrier of the gene.
Later my sister became pregnant and got the same red flag on her blood test. “Not to worry,” I told her reassuringly. “Steve just has to give some blood and everything will be fine.” Except that, it wasn’t. Steve is a carrier, too. The chances of the baby having it were 25%. Cate was born and had to have stomach surgery right away to fix an intestinal blockage. CF affects the entire body but it is most brutal on the lungs and stomach.
I read the book in one sitting, expecting to cry. After all, this is a lot of baggage to bring to a book. Instead, I amazed myself by laughing.
We spent some time with my niece this summer and got a lesson in the treatments she has to complete daily when she’s healthy. She has to take enzymes to eat because CF makes it impossible to digest food. She has to be given twice daily thirty-minute breathing treatment to loosen the sticky mucus buildup in her lungs along with inhaled medicines. And that’s just when she’s healthy! When she’s not healthy, she needs four vest treatments a day and it takes a long time and a lot of medicine and sometimes lengthy hospital stays to get her well again.
My mom, very well-versed in giving this rambunctious two year old her treatment, grabbed her favorite books before getting her into the vest. I had to laugh watching the process – it looked like my mom was trying to put socks on an angry octopus. Like her mother, grandmother, aunt, and cousin before her, books are the choicest form of entertainment and one of the few things she will sit down for. Cate selected the fabulous Pete the Cat: I Love My White Shoes by Eric Litwin. Great choice, Cate! One of my favorite series for little people. Vest treatments are designed to shake the sticky mucus loose from the lungs so they can be coughed out. Cate’s tiny, raspy voice (another side effect of CF) shook and trembled as she read along with her grandma, “I love my red shoes! I love my red shoes!” It was a moment my husband and I will never forget as we laughed and laughed at that little voice.
Ghosts had realities that people with CF face: vest treatment, frequent, long-term hospitalization, and shortened life span. But it also had love and hope and laughter, just like all of Raina’s books. New treatments have added years to the lives of people living with CF. Today their life expectancy is close to 40. This is an improvement from the past when a child with CF rarely lived past ten years old.
Ghosts is currently being passed around my classroom with high praise from all who read it. Many of my students like the Dia de Los Muertos theme and the slightly eerie setting in northern California.
There is currently no cure for CF. But researchers are approaching new medicines that have the potential to significantly lengthen the lifespan of a person with CF. If you are so moved, please donate to the Cystic Fibrosis Foundation https://secure2.convio.net/cffh/site/Donation2;jsessionid=74EF1DA9F9D559FFE65DCB760E0F8CDD.app212a?1761.donation=form1&df_id=1761.