CARE & GIVING: Anna’s Story, Part III

Fri 18 Mar 2022

CARE & GIVING: Anna's Story, Part I

By Anna Kraft*

Check out more from Anna, a mother of a young child with cerebral palsy in part three of her four-part series. 

Finally, don’t lose your own identity in that of “parent of a child with a disability” or even just “parent.” Although I love being a mother, I was Anna long before I was “Mom.” And Anna loves reading, ballet, taking walks outside, college football, and traveling. I find peace wandering around the library, going to church, and talking to my therapist. Making my home cozy, eating donuts from my hometown donut shop, and witnessing strangers be kind to one another bring me joy. I am introverted, organized, and tidy, and nothing gets me more excited than a well-written list! I am all these things, AND I parent a child with CP.

Maybe you don’t have a child with CP or another disability, but you want to support someone who does. That’s amazing! We need your support. We are facing challenges both big and small, both obvious and lesser known, everything from scheduling myriad therapy appointments to the endless hospital payment plans to trying to find pants that are wide enough to fit over our child’s orthotics. When my husband and I first found out Bert had CP, we decided to write a letter to our family and close friends to provide information and to let them know what we needed from them. We realized that we were going to have one chance to make a statement about our love for Bert and our hopes for his future. There were two main things we asked of them that would apply to any family with a child with CP: first was not to speak about Bert’s future differently than they did before his diagnosis. Our family has always talked about Bert playing football for the West Virginia University Mountaineers, learning to ski, and traveling to space. Our job as Bert’s family and friends is to encourage him to do anything he wants and not limit his dreams. The second was directed to our loved ones who have children and grandchildren or are in a place to teach children. We asked them to please begin talking to the children in their lives about people with disabilities and who are neurodivergent. There are all different kinds of people in the world, and as parents, we all want our children to be accepted and included. There are so many wonderful books, toys, and reading materials for parents that can help foster wonderful discussions and teaching opportunities.

*Anna's story is part of CARE & GIVING.This series covers a few different aspects of the cerebral palsy community. It features the experiences of those who care about and for people with cerebral palsy, including parents and caregivers, therapists, paraprofessionals, and other allies. It also highlights donors who have made it their mission to move cerebral palsy forward, because care and giving go hand in hand.

The CARE & GIVING blog is intended solely to raise awareness about the varied human experience with cerebral palsy and shouldn't be read or construed to contain any medical advice or medical endorsement by Cerebral Palsy Alliance Research Foundation. Only you and your doctor know what's best for you. Please consult your doctor for medical advice.

Tue 16 Jul 2024

By Kim Greene Season of Confirmation With his affirmative comment and now wondering if indeed I had a neurological issue, I googled what I knew about my history. I knew that I had been adopted and born eight weeks early and had to be kept in the hospital until I was stable and weighed more […]

Wed 10 Jul 2024

A green background with black rectangle across the bottom. In the left are the colors of the disability pride flag to the right white text reads "Hosted by" the the CPARF and CVI logos. Above, text in dark grey reads: CP & CVI Now: A Community Discussion followed by July 25, 2024 from 5:30-6:30 pm ET.

Cerebral Palsy Alliance Research Foundation (CPARF) and CVI Now (part of the CVI Center at Perkins School for the Blind) are hosting a joint event on Thursday, July 25 from 5:30 pm to 6:30 pm ET. Launching CPARF’s new “CP &…” series, the event will dive deep into the connections between cerebral palsy (CP) and […]