Ned’s Sister

By Kate Barrow, “Ned’s Sister”

There is a long running joke among my friends and family that started when I was a kindergartner in Charlottesville, VA.  My younger brother was in the pre-k class for children with special needs at the same school, and on occasion some of the fifth graders would help out in the classroom.  There was one day when a boy coming up to me in the hallway said, “Hey, aren’t you Ned’s sister?  He is really neat and I help out in his class.”  And that is how it started; everywhere the two of us went, I was always “Ned’s sister.”

My name is Kate (Kay or Katie depending on what social circle you are in) and I am the oldest of three. I have two younger brothers, Ned and Andrew.  Collectively, my dad calls us “The Gang of Three.” Even as adults, we still have a special dynamic that I have come to appreciate and hope to teach my own children someday.  My brother, Ned, has cerebral palsy resulting from a traumatic brain injury in infancy that we call his “accident.”

Being a sibling of a person with a disability has not always been the easiest or most kind experience. I remember when Ned was born; the memory is fuzzy and has the perception and understanding of a toddler almost too young to remember, but I do. I remember the nurse at the hospital giving me a balloon because I was a big sister, the ride in the brown elevator up to the maternity ward, and my dad holding my hand because I didn’t like hospitals and wasn’t used to being in them.  I don’t remember much about when Ned came home from the hospital, and although our family has lots of pictures, there is nothing that really stands out. I do remember our lives after his accident, and am still working to understand how it changed each of us afterwards.

For me, the protective big sister instinct kicked in around age 5, and never really went away. I remember being sensitive to how other people treated my brother, when other students and my peers would use the R-word and I would flinch. I remember how my mom grieved and cried whenever she heard an ambulance, how my father’s quiet grieving was almost impossible to interpret, and how my brother Andrew took up the role of advocate and side-kick all in one (they used to play super-hero in their room and jump from bed to bed saving the world).

As we grew older, our friendship grew stronger, and, ultimately, I grew to believe we were lucky.  There are times when I wonder, and I know I shouldn’t, what our lives would be like if Ned hadn’t had his accident. I worry about what Ned’s future will hold, how other people will treat him and whether or not he will be happy.  Then I realize that he already is. Even if it takes him a little longer, he excels in everything he does, he has numerous friends, and there is not a person he has met that can honestly say they do not like him (seriously try and find one- it’s impossible).

Ned is creative – he writes songs and plays the drums like nobody’s business.

Ned is intuitive – he always says the right thing at the right time, and gives me a hug when I need it the most. Ned is smart – you should ask him to tell you about B.B. King.

Ned is an advocate- he took the lead on his IEP, and has no qualms about walking up to politicians and telling them about himself, The Arc, and Best Buddies.

Ned is a leader – he is the buddy director for his chapter with Best Buddies.

Ned is an athlete – he walks everyday at least 4 blocks around the neighborhood and he loves to go bowling.

Ned has goals – he wants to go to college, have his own apartment near where he works, and cook for himself.

Being called “Ned’s sister” used to annoy me, but not in the way that getting a parking ticket or missing the elevator annoys me (not that I have ever gotten a lot of parking tickets … .) Now, when I think about all the awesome things my brother does and all that he has accomplished in his lifetime, being called Ned’s sister is an honor.  I know I have a lot to learn from him and I know he has a lot to teach us. His perseverance and determination to show the world that he CAN and he WILL is amazing and I think we can all take a page from his book.