By Marty Barnes
In 2006 my husband and I welcomed our first and only child into the world while living in Santa Monica, California. About one month before the due date we were rushed to the hospital where they performed an emergency cesarean. Due to a traumatic birth our beautiful little girl, Casey, had to be resuscitated and then was whisked away into the NICU. We were told that she would not survive the night. She did however, and for nearly 10 years she continued to prove doctors wrong. She overcame more in her short life than many of us will ever hope to achieve in our lifetimes.
Casey had MANY medical issues. She required around the clock care. Luckily, I was able to quit my job to stay home and take care of her. We had to learn new terminology, how to use special equipment, how to fight with insurance and get our baby girl the support she needed.
The first two years as Casey’s mom were really difficult for me. I often refer to this time as my darkness. I was searching for light, but didn’t think I would ever find it. I spent every moment working tirelessly to just keep my baby alive; medications, feeding her, suctioning to help her breath, stretching her stiff little limbs, bathing, crying, and starting all over again. My marriage was put on hold; my life was put on hold. Every breath I took and everything I did, I did for her.
Just before her second birthday we moved back to the Austin area to be near friends and family. After arriving in town we added home health nurses to our routine. It started with just a few hours a week, but over the years we added more and more hours until we had nurses in the most of the time. Once we had help, I was able to sleep, clean the house, and eventually I even had time to meet a girlfriend for lunch or catch a movie with my husband.
I found a local group of mothers of children with special needs and wanted to get more involved. One Saturday they had a meeting. I joined about eight other mothers in a quiet little room. We sat in a circle and all took turns telling our stories. I listened as each mom shared her story. Each story was so different; however we all talked about how alone and isolated we feel, and how scared we were for our children. I had no idea there were other moms out there that felt the same as I did. It was at this meeting that I learned that part of what I was going through was grief. I was not grieving the loss of my child, no she was still alive; I was grieving the loss of the life I had planned with my child. I was also suffering from PTSD. The experience in the NICU was one that I would relive each time I told it. The smells, the sounds, all of it would come flooding back along with the pain and fears that I still struggled with every day.
After this meeting I became very active in the special needs community in efforts to help other moms feel less alone than I did. The special needs community became part of my family over the years. When Casey passed away in 2016 we decided to stay rooted in this community and to continue to give back in honor of Casey. We created Casey’s Circle to serve as her legacy. Still today, everything I do, I do for Casey.
Marty Barnes is a native Texan and best known as Casey’s mom. Marty and her husband created the nonprofit Casey’s Circle after Casey’s passing in 2016. This organization offers many tools, resources, social opportunities for children who are medically complex, and bereavement events. Casey’s Circle also includes educational resources specifically designed for caregivers of children who are medically complex.
In addition to her own organization, Marty is very active in the special needs community and works closely with her community’s local children’s hospital and the Palliative Care Team to help improve family centered care and best practices for children with complex medical needs.
Marty is a full time student working toward a career in nursing, specifically to work with medically complex children and their families. When not in school or volunteering Marty and Tim are working to remodel a 100+ year old ranch that they recently purchased.
If she can find some down time Marty enjoys movies, swimming, tennis and writing. She never passes up a chance to share Casey’s story or to meet another parent of a child who is medically complex. Being able to connect and help other families through Casey’s story has become her mission and passion.
Founder/Director – Casey’s Circle
_”Strengthening Circles – Improving Quality of Life”_
Our Nonprofit: https://caseyscircle.org
Casey’s Story: http://caseybarnes.org
Our Current Project: http://twilightranch.wordpress.com