My name is Michele and I am the founder of CP Daily Living (http://www.cpdailyliving.com), an educational resource website and Facebook page.  CP Daily Living is designed to give families and caregivers dealing with CP a central place for practical information and resources within the context of an emotionally-supportive community.

 

We created the site because we recognized the need that existed.  My husband, Blake, and I are raising our young daughter, “Maya” (that’s her middle name), who has both a mixed form of CP, as well as epilepsy. I stay home coordinating her care, managing our household and running the site. My husband is an adult nephrologist (kidney doctor) who maintains busy hours. Although Blake’s working knowledge of the physical body helps us navigate this often-difficult terrain, he doesn’t try to be our daughter’s doctor. Instead, we work together to make decisions about her care and treatment while respecting and collaborating with the professionals we have chosen to guide us.

CP Daily Living was inspired by our family’s struggle to find resources and information about the daily details of raising a child with cerebral palsy. We were shocked to discover how little information was available to help us figure out how to cope with this incredible challenge. The information we found online was often scattered, inaccurate, and often incomplete. And rather than being hosted by a national foundation or organization, many online sites were (and still are) maintained by attorneys advertising services for malpractice lawsuits. We have come to realize that many parents aren’t aware of this.

We wanted to create a place where parents, caregivers, and relatives could visit when it was convenient for them, and that could offer reliable and detailed information about CP related issues.  If we were struggling to figure out how to manage the daily care of our daughter despite Blake’s medical knowledge, we thought other families must be having an even more difficult time coping.

With this in mind we set out to create CP Daily Living so that people no longer have to scour the Internet the way we did; and, on a more personal note, we wanted to share how we navigate our daily challenges and prepare for long-term ones as well.  CP Daily Living shares information and experiences about everything from treatment modalities, to negotiating air travel, to thinking through equipment purchases.  We also include our experiences from an emotional perspective, such as how I felt when our daughter asked if she would ever learn how to walk.

Since Cerebral Palsy presents in many different ways, our experience may not always apply to everyone’s situation. Despite this, our goal is to help make the journey easier by helping parents navigate the challenges we do share and by letting them know they are not alone. I do this because I feel it is part of my life’s work. I do it because I know the exhaustion, confusion, pain, and feelings of being overwhelmed. I do it because the doors opened to allow me to, and because my heart is in it for the long haul. Through CP Daily Living we hope you will find information, insight and most importantly, support to better equip you and your family for you unique journey.

May your path become more manageable and graceful with each passing day,

Michele