I was once told that we fear what we don’t understand. And when it comes to disease, many are often unaware of how much it affects the family and unsure how to help. So I’m letting Stefanie, a girl whom I went to high school with, share her story of what it’s like because maybe it will give us a bit more insight! Here’s her story about her sister’s cerebral palsy.
One of my earliest memories is December 14, 1997, the day my little sister was born. I was at my grandmother’s house while my mom and dad were at the hospital preparing for my sister’s arrival. I was five-years-old and remember my grandmother talking to someone on the phone about my mom and new baby sister, only she was not happy, and was hysterically crying.
I knew at that moment something was wrong.
My sister faced a major battle at birth and became disabled due to a medical malpractice. She is diagnosed with Cerebral Palsy and also suffers from seizures. She is unable to walk, talk, or care for herself in any way. Over the past 21 years of my sister Amelia’s life, we have developed our own form of communication. She is a happy, spunky, stubborn individual with the biggest heart and the most loving soul.
Being her sister has been my greatest achievement, but also my greatest battle.
There is no guidebook on how to be a sibling of someone with special needs. No one warns you of all the moments you will feel forgotten about because your special needs sibling needed more attention than you did. No one informs you that sometimes people suck and will say hurtful words or stare and make you and your sister feel uncomfortable.
I felt enormous amounts of guilt at times because I could do something that my sister couldn’t.
Looking back on my childhood, I felt I grew up too quickly at times. I was familiar with being in and out of hospitals and doctors’ offices. I remember my six-year-old self sitting in on all of her therapy sessions, whether it be feeding therapy, occupational therapy, physical therapy, or speech therapy. As a teenager, I knew what to do in case Amelia had a seizure. None of my friends had these experiences and I was envious of them because of it.
I spent a lot of my childhood worrying about my sister’s health.
My parents were extremely supportive at helping me cope with my sister’s diagnosis. One of the ways my parents helped me understand Amelia’s situation and help me cope was taking me to see a counselor. I didn’t know it then as an 8 year-old attending individual psychotherapy sessions, but my experience had such a positive impact on me that I went on to become a counselor.
Although I have come to terms with my sister’s situation as best as I can at this point in life, there are still new challenges I face accompanying her on her journey throughout life.
One of the most recent challenges we faced together was her turning 18. To the average person, turning 18 simply means becoming an adult, officially. For Amelia turning 18, it meant that my parents and I had to apply to be her guardians.
