My Family

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My Family

My family is small in numbers but strong in support and giving. Prior to my being born, my mother and grandmother knew I would face medical challenges having gastroschisis, but they did not know I would also have Moebius. My mother has seizures due to being a epileptic and the doctor thought both of my medical issues were related to the medication she was on while pregnant. Shortly after my birth, my mother asked my grandmother if she would co-parent with her because she continued to have seizures even while on medication and was scared something could happen to me. So I had the best of both worlds, but eventually I totally lived with my grandmother. My grandmother also served in the Army Reserves and would not take “I do not know” as acceptable by the medical professionals regarding my health having moebius. Every new doctor became educated as my nana shared her 3-ring binder of my medical treatment history. Her and I would make a game of “will the doctor know” and waited for the person to ask the questions about Moebius syndrome or we would know they were really good when they began to talk to us about Moebius and asked how they could help. Moebius syndrome has come a long way in the last twenty years as far as educating the medical field, public and treatment. I always knew my options (surgery) and chose to be who I am and as I am. Community service was also a family focus. It was important for my nana to teach us about others who were in need in our community and to be there for them in various ways even if you did not have much yourself, and that a person’s “time” is priceless when shared with others. This picture is of my nana and I volunteering to serve Thanksgiving dinner at the Salvation Army.

 

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