This I Believe

Pinalben “Pinky” - Paducah, Kentucky
Entered on October 18, 2008
Age Group: 18 - 30
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A Silent Thank You

As they say, a family means father and mother I love you. Maybe not for all, but that is the definition of my family. Ever since my younger sister died about 15 years ago, it has been my mom, dad, and me. I have a progressive, neuromuscular disorder named Friedreich’s Ataxia. I am virtually quadriplegic without balance. I also have insulin-dependent diabetes and heart problems as side effects of my FA.

My sister had the same disease I have. After she died from heart complications at age 9, my parents decided to come to the USA. My parents knew I would have a better life in the USA than my birth country India. Immigrating to the USA is not an easy process, and certainly not inexpensive either. To make a long story short, it took about three years and countless trips to the American embassy, which was located far away from the village we lived in, to get US visa.

Today, my parents and I have been living in the USA for almost 10 years and are US citizens. My dad is a mechanical engineer and my mom has a BA in Hindi—India’s national language. However, they did not pursue their careers when they came here. They decided to go into the independent motel business because it would allow them more flexibility to tend to my needs such as chauffeuring me to doctor appointments, college, and extra curricular activities. The independent motel business is definitely not pretty; it is a 24-7 hassle of dealing with customers, cleaning rooms, doing the motel laundry etc.

Chauffeuring is not the only aspect they do for me. I pretty much need help in every physical activity I have to do and that includes bathing, dressing, combing my hair, and helping me in the restroom. Since I am a diabetic, my parents take my blood tests and give me insulin injections. The times they have to lift me during the day are the hardest because I am dead weight and my parents are not getting any younger at age 51 and 48. Although I am not big, lifting dead weight frequently is not healthy for the body especially at that age. Yet, they do not send me to any kind of Adult daycare (Kentucky Medicaid does not allow Home Health aides to lift either.)

Even though they could have made more money by working in another career, they made a sacrifice for me. They are still making sacrifices. I am 25 years old, but I still seem to be their number one priority. I want to be a novelist and they motivate me by saying, “You will be the next JK Rowling!” I do not have enough words to thank my parents. My ambition is to earn enough money to hire competent personal care attendants to handle my needs and give my parents lavish vacations because they are the reason I am here today!