When your child is one of the most complex children that people may ever encounter, a funny thing starts to happen. Yes, you have to deal with staring and questions, but you also get VIP-level access to almost everything.
You never wait in waiting rooms; instead, it is more like a red carpet is rolled out to greet you. In public places, people open the doors for you. In some instances, people even pick up your lunch tab.
Parents of other children with special health care needs (all types of disabilities) would want to talk with me and share their stories. People would always compliment and go out of their way to be sure to say hello to Casey. She was very well known in the disability and medical communities. Going out with Casey, especially to medical locations, was kind of like traveling with a celebrity.
Sometimes I would take these kind gestures and accommodations for granted. If we were in a rush, or Casey was having a rough day, then we would just get in and out as quickly as we could. Most of the time, however, I was very grateful for the special treatment and made sure to say thank you as often as possible.
Over the years, “Marty” kind of faded into the background. Most people don’t even know my name; everyone just calls me Casey’s Mom. It’s a title I wear with honor. If I was in public without Casey by my side, some people would not even notice me, or they would tell me they barely recognized me out from behind the wheelchair.
I know that all the special treatment was for her, and she deserved every second of it. Being part of it made me feel special, too. Casey passed away in March 2016. I miss her every second of every day. I lost more than just my daughter, though: I lost my identity. Who am I without Casey? I am definitely no longer special.
I am just another face in the crowd now—a face with a broken heart. I don’t want to go back to being the person I was before I was Casey’s Mom. I have learned so much in the past 10 years and I am a totally different person. I can’t simply go back to my old job, my old ways of life. None of that fits me anymore.
Now, I must find an entirely new identity. I am and always will be Casey’s Mom, but it’s different now. I am finding ways to stay connected with the disability community. I am working hard every day to keep Casey’s memory and legacy alive. I have adjusted to being just another face.
I knew our fate from the moment Casey was born. We were never expected to have a single day, much less nearly 10 years with her. Being Casey’s Mom will always be my greatest success. Whatever comes next will pale in comparison to the last 10 years, but I will hold my head high and do my best to make her proud of whomever I become.
The Accepting, Grieving and Adapting section of this website offers relevant and valuable information.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.