Told through the perspective of Angela Parker-Brown’s twin twelve-year-old daughters, this slim volume offers children and young adults the tools to navigate a parent’s serious medical diagnosis. For Angela Parker-Brown, that diagnosis was ALS, Amyotrophic Lateral Sclerosis, a debilitating disease for which there is no cure. From the early signs of the illness to the later stages, Paris and Parker openly talk about their journey with their mother. They discuss their fear and confusion, as well as their sense of unfairness that this should happen to their wonderful mom, who took such good care of them and continued to do so as her condition deteriorated.

Guided by a helpful book, Real Kids Talk About ALS, Feeling Normal Sad and Different, and by their mother, Parker and Paris learned about the disease and how to cope with their emotions. Although they are twins, each daughter responded to their new situation differently. Parker delved into research, finding out additional details about ALS, which scared her so much she didn’t tell her sister. Angela impressed on her girls how important it is to have the right information, and Parker says how glad she was that their mother didn’t try to hide the truth from them. “I liked that our mom trusted us enough to tell us the truth,” she said. “It’s way scarier when you don’t know what’s going on, but you know something is going on, but nobody is telling you.”

As the disease progressed, Paris and Parker learned that they were still able to do normal things like watching TV together, having friends to visit and especially making memories with their mother. Through all the changes in their mother’s condition, the girls learned how important it is to acknowledge their feelings, to ask for help, and to always know their mom is still their mom – and that she rocks!

Angela Parker-Brown was a 50-year-old mother of twins, Paris and Parker. Along with her daughters, she navigated the everyday realities of living with ALS. She lived in Truro, Nova Scotia, and published her first book, Writing With My Eyes, which was created with the aid of eye gaze technology.

Angela Parker-Brown's profile page