LIVE QUICKIE BLOG

Congenital Muscular Dystrophy (CMD) affected individuals Kelly Berger and Avery Roberts are making their voices heard. Together they hope to tackle misconceptions surrounding disability and give a loud voice to the oft-forgotten rare disease community. CMD is a rare genetic disorder which causes the muscles to break down faster than they can repair or grow, which leaves Berger and Roberts to rely on wheelchairs as their main source of mobility and independence.

Six years ago, my 49-year-old wife, J., survived a severe hemorrhagic stroke that left her with limited ability to control her arms and legs. This event started a complex and often frustrating journey figuring out how to help her exist in this new reality. One major area of concern throughout has been mobility, which prompts the question, "How many wheelchairs are enough?"

As I grew older and the World Wide Web became much easier to access, I began my search for all the books focusing on characters with a disability that I could get my hands on. In fact, I even wrote one myself, so that no other kid in a wheelchair would ever have to grow up not seeing themselves represented in a storybook character. Here is a list of seven children's books that have a main character with a disability.

Living as a person with a disability has its challenges. As a result of a motor vehicle accident in 2003, I am a T-12 incomplete paraplegic. Over my many years as a wheelchair user, I have generally figured out ways to make things work for my specific needs and have done my best to prepare for what life throws at me. However, when my husband and I decided to have a baby, I was absolutely unprepared for what I would unknowingly go through.

The reason I write is to help others. When I started out on this journey with my baby, I was young at age 23. I would have loved to have blogs from other parents and caregivers. The more advice, the better. That doesn't mean I would have had to use it all, and neither do you. But if even one thing helps you, then I have met my purpose. I hope all of you will use this piece of advice: focus on the joys!