My Brother, the Biter

As I look back over the posts since I started this blog, I don't want you all to think that Kevin and I didn't fight when we were younger. We did. It's just that I had to wait until he was a bit older and could fight back.

When Kevin was younger and he would get really frustrated, he would bite his arm -- his left arm, just at the wrist. If he was going through a tough time or he was really worked up or nervous about something, you could see multiple rings of teeth marks and bruises on his arm.

When Kevin was little, he loved the bathtub. He would stay in the tub for ages. He had bath toys and paints you could use on the wall, all kinds of stuff like that. I think he liked it because the water buoyed him, and he could really relax his muscles. Well, one time, my mom had me get him out of the tub, and he wasn't ready to come out yet. He was probably about 5, so I would have been 10 or 11. Well he splashed me and cried and said he wanted to stay in, and he was putting up a pretty good struggle with me. So in order to get him out of this particular tub, I had to drain the water, climb into it, wrap him in a towel and pick him up and get a good hold on him to then climb back out of the tub. He was so pissed!

I started carrying him out of the bathroom, and he's crying and struggling. Then he leaned in and bit me on the shoulder! HARD! I dropped him right on the floor and went out of the bathroom and slammed the door behind me and went to tell Mom. I don't remember what the additional fallout was, but he never bit me again.

They Call Me Miss Sib!

It's been a week since I started this blog. So far, the entries have been mostly humorous stories about Kevin. But I have hopes that this blog will eventually focus not just on Kevin and me, but on other relevent issues involving siblings (aka "Sibs") of those with disabilities. I hope to comment on housing and legal issues, Social Security Disability and social activity, among other topics. That's a big goal, and I'm not going to push it. I hope it will come in time.

I've very recently become involved with a group here in New York called AHRC, an organization that offers services to people with intellectual and developmental disabilities and their families. I attended a fundraiser last night supporting the AHRC Siblings Committee, and I'm so looking forward to working with this group.

There's an instant shorthand when talking with others who have brothers and sisters like Kevin. You just get each other. I spent time last night meeting other Sibs and chatting about where they "fit" in their family dynamic. One of the trickiest things, I believe, is learning to be OK with having your own life and not giving it up entirely for your brother or sister's needs. There's a lot of potential for guilt there.

Whew - those last two sentences were difficult to write.

The First Entry

I tell a lot of stories about my brother, Kevin Ware. Usually they're about his reactions in a situation; sometimes just funny things he's said. Most of my friends have heard multiple stories about him, but if I'm talking to people who haven't heard a Kevin story, someone will invariably ask, "How old is your brother?" Then I have to hesitate and backpedal a bit.

Kevin is my younger brother, an adult with cerebral palsy. The technical name for his condition is that he has spastic triplegia; he has full use of one limb (his left arm) and partial use of the other three. He has some developmental delays as well, but he is very high-functioning and very verbal. Ultimately I'll answer, Kevin is 39 going on 15 on some days and 39 going on 53 on other days. Simply put, my brother is disabled.

Then I'll get "The Look." Whoever I am talking to will stop smiling, get a small frown between her eyes, tilt her head to one side, and say softly, "Oh...I'm so sorry." My immediate response is, "There's nothing to be sorry about; he's disabled, not dying." And I'll get back to telling my story.

I've yet to offend anyone with my stories about Kevin, but now that I am putting them out there in cyberspace, it may soon happen. Some of my anecdotes may seem like they're mocking Kevin and making light of his challenges. And sometimes they are, but if a big sister can't tease her younger brother, who else can? He and I have talked about this little project of mine, and he's OK with it.

Life with a disabled sibling offers a different set of challenges than just typical sibling rivalry or affection, but at the end of the day, he's just my brother, and there are plenty of times that he gets a good sock in the arm from me, disability or no.