My sister Adria is 16. Five days a week she goes to school, then comes home and hangs out with our parents and sisters. She loves music and "Little House on the Prairie", and thinks it's hilarious when people trip or knock into things as they move. My sister also so happens to have a severe offshoot of cerebral palsy (Schizencephaly) and can't walk or talk.
Before she was born, by a twist of fate, Adria's brain developed with clefts that filled with fluid. She now has a shunt in her head that drains the fluid, and a feeding tube on her lower abdomen. Her muscles are stiff from underuse and her spine is curved, so much so that she had to have a rod put in a few years ago to straighten it out.
Often when I tell people my sister has CP, they respond with some sort of sympathetic audiation or an "I'm sorry". Sure, it's sad that she'll never get to play sports, meet the love of her life, or drive a car. It's sad that I'll never get to talk to her about boys or clothes or help her decide where she wants to go to college. But considering the circumstances, Adria is happy and comfortable (when she's not she knows how to tell us...trust me), and that's what's important to my family and me.
Kirstin Ortiz
Our family will be going to Disney World for the second time this March. Adria goes to school and interacts with her friends every week. She has family and nurses who love her unconditionally. She's always smiling and often laughing. To us, Adria's life isn't "sad". She's one of the brightest lights in our world.
Having a sibling with CP has immensely impacted the course of my life. Most kids don't know how to operate a feeding tube and administer seizure medication at the age of 12, which is how old I was when I learned. When she got her last surgery, on her spine, I was there from the time she entered the hospital to the time she got out of the operating room. I'm officially authorized to sign out her at-home nurses and care for her myself while my parents are at work.
I truly believe that if Adria wasn't around, I wouldn't have chosen the career path that I did. While I was going through the college application process, someone at the time asked me "Do you think Adria has something to do with you wanting to study music therapy?" I didn't even have to give it a second thought...of course, she did. I grew up taking care of and getting to know someone with special needs; it's only natural that I'd grow up with a strong sense of purpose rooted in wanting to help others.
Kirstin Ortiz
Growing up with someone whose needs were greater than mine (and most people's) has made me a more compassionate and humbler person. I made me realize from a young age how precious life is, and that you never know another person's history or what they have going on at home. It made me more sensitive to the needs of others, and instinctively I think about others before myself.
For this, I'm eternally grateful to the true angel who is my sister.
