The Art of Parenting While Sick

I am a mom with two chronic conditions—severe asthma and Addison’s disease. Before my son turned three, I’d been in the hospital five times. I was anxious about how my unpredictable health was going to affect him. But when I went online to find a book to help me, I couldn’t find one. So, I decided to write the book I needed (and I think a lot of other parents do, too!)

While writing and researching the book, I spent more than 100 hours interviewing parents from around the world with a wide range of conditions including recurrent cancer, myasthenia gravis, amyotrophic lateral sclerosis (ALS), Parkinson’s, cystic fibrosis, kidney disease, endometriosis, depression, lupus, type 1 diabetes, and more. I also interviewed a wide array of experts including child and family psychologists, genetic counselors, clinicians, and child life specialists.

I drew on their expertise to come up with age-appropriate strategies, tools, and scripts to help parents:

• talk to their children about their illness, flare ups, hospitalizations, medical emergencies, and surgeries
• come up with household guidelines to help the whole family manage their condition
• parent from the couch on rough days
• talk to their doctors about pregnancy, fertility, and heritable conditions, and much more.

If you’d like to participate in a research survey for my book, I am still collecting responses. The survey is anonymous and there are 15 questions. It takes about 10 minutes to fill out.