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.

Two Faces of Kevin, Captain of the Blue Wheels 5K Team

One Week to LA and the 5K!

I have spent the last three days trying to rent a wheelchair-accessible van for my trip home next week. Now this isn't the most difficult thing to do, but I don't own a car, so I have no collision/comprehensive insurance, and the specialty companies that rent these vans don't supply waivers like the regular rental car agencies do.

So I made my first foray ever into the world of Travel Insurance. Oh, boy, some of them sound like totally reputable places when you call. Others sound like you are calling someone sitting at their kitchen table to talk about insurance. Plus a wheelchair van is a high-end vehicle valued between $40,000-$50,000. Some of the places didn't carry enough coverage; others would only cover collision, but not theft. And while I know nothing is going to happen, I was getting sick over the thought of not having covered my ass when I rent this van.

So I finally found one place that carried the amount of collision coverage I needed, but the agent had to be sure the underwriter would cover a specialty vehicle. It worked out just fine and I am all set up, but now not only do I now have collision damage for 5 days, I also have $100,000 Accidental Death coverage and a $2 million Medical Evacuation/Repatriation Benefit, among 6 or 7 other things, and all for only $45.00!

Best Christmas Present Ever

Having a disabled sibling is a lot like having a kid. You worry when they are going someplace new for the first time. You freak out when they move into their first apartment. And you have to help them buy your own Christmas presents and then pretend to be surprised on Christmas Day.

For Christmas 2008, I wanted Kevin to be more involved in his Christmas shopping, plus he enjoys going out. A big new shopping center with a massive Target had just been built up the street from Kevin's apartment, so one afternoon before Christmas, I headed out there, and we walked up to do our shopping.

I told him that he was responsible for choosing my presents himself this year, and he agreed that he could do that. Not that I wasn't going to give him a bit of guidance.

I needed a new wallet, so we went over to the accessories. We looked at the wallets and showed him the kinds I liked, and we talked about the colors and other things that he needed to look at when he picked one. He wanted to think about it, so we continued around the store looking.

He needed to buy gift cards for our teenaged cousins, and there was a nice display that was easily reachable from his wheelchair so we stopped to look.

Laura: So you need to pick out 3 cards for the kids.
Kevin: Alright, alright, alright, let me see. (Big pause while he looks the cards over.) Let's do the dog for Sean. And...the snowman for Jenna. And, let's see...the tree for Greggy.
Laura: Ok, great choices!

Now, you would have thought he had just picked out the most amazing, expensive present that anyone would ever want, he was so pleased with himself. When Kevin gets excited, he sort of pumps his arms up and down, his legs kick in and out, and he lifts himself off of his seat a bit, and he lets out a sort of a squeal with a really big grin on his face. He was doing that now.

So we continued on in our shopping, stopping occasionally for me to show him something I was interested in. We got to the hair dryers. I looked at a few -- I really needed a new one and they were in his budget. He decided that was one of the things he was going to get me. So I showed him the two that he could choose from and went around the corner so he could pick and put it in the cart in "secret."

Then he decided he wanted to go back to the wallets. So I had him lead the way, to make sure he didn't get lost in the store, and he looked at those wallets very carefully, and picked them up and opened them, to make sure he picked the best one. He made his choice and put it in the cart.

Then we had to get gift bags. He picked out the ones he wanted and we went ahead to check out. He had to unload the cart so I would handle my presents too much, and we headed back to his house with all of the goodies.

I put my presents and the bags and tissue in a separate bag and told Kevin to bring it to our dad's house on Christmas Eve, and someone there could help him wrap them. I draw the line at wrapping and then opening my own presents.

A few days later, when I arrived to pick Kevin up on Christmas Eve day to go down to Dad's, he was all packed and ready to go, and there was a gift bag sitting in his hallway when I arrived.

Laura: What's the bag in the hallway for?
Kevin: It is your Christmas presents.
Laura: Why aren't they in the Target bag I put them in? (Realization dawns on me and I look closer at the bag.) Did YOU wrap my presents all by yourself?
Kevin: Yup! But there wasn't a card on the little bag, so I just wrote your name on it.

I almost burst into tears.

He had rolled the wallet in tissue before putting in the little bag, labeled the little bag, put the hair dryer in the bigger bag with a piece of tissue over it, and then had set the little bag in the bigger bag. And he used the Santa hat card and labeled it on the bigger bag: "To Laura From KW."

Now, this may not seem like a lot to some people, but this was huge for Kevin. He doesn't write much without prompting. He can only use one hand to do all of this, and the little card attached to the one bag didn't have a lot of space on it, so he really had to control his writing to fit everything on it.

Laura: You wrapped my presents? All by yourself? That is just the best present ever!
Kevin: (Excited, squealy noises and gestures)

I gave him the biggest hug! And I praised him about it for the whole ride down to Orange County. I said to him over and over:

Laura: I just can't believe you did that all on your own. That just makes me so happy.

But one of these times he got really quiet:

Laura: What's wrong?
Kevin: (Big pause) Did I spell "from" right?

This Is Harder Than I Thought

When I started this blog two weeks ago, I thought one entry per day was completely reasonable. And the first five or six happened without too much effort, although it would take me an hour or two to write and edit each day. But now as I am getting further along, I am finding it more difficult. I haven't posted a new entry for nearly a week, and it hasn't been for lack of trying. I have several partial posts collecting cyber-dust.

I have a huge list of topics to cover and little notes to myself (Kevin and school; flying with Kevin; wheelchair cam, order/routine, etc), but as I try to put together a solid story in a post, it's not always coming together. I'm very happy with what I have started on this blog, but as I try to delve into certain topics, it pushes some buttons that I'm not quite ready to discuss yet.

So please stick with me and keep checking back. There's still a lot to tell.

And on Tonight's News...

This is a bit of a cheat. I wrote this as a note on Facebook back in September, but I stumbled on it the other night and thought I would repost it here.

Sept 13, 2009: Kevin and I were talking tonight on the phone and I had my computer nearby, so I was able to type this up as he was talking.

"So did you hear they figured out about Michael Jackson? They finally put that baby to bed. ... It was a homicide. ... Yup, somebody killed him. They got that doctor. [I made a comment here that the whole thing was a little sad.] Yup ... But there are other great singers out there like Madonna. ... But Madonna is a little weird. But she has kids so that's OK. That's what counts. At the end of the day. And he was OK because he had kids."

By that point I was trying to type and not to laugh out loud at the same time, so I missed his last little musings.

Uncle Walt's Magic Kingdom by the Freeway

I can't believe I've actually gone over a week in this blog without addressing Disneyland. Kevin really loves going to Disneyland. So do I (for those who know me -- shocker, huh?). It's usually one of the first trips we have to plan when I'm home for a visit. When I was a kid, our grandfather, Popeye (long story explaining that; just go with it), worked for a company that would rent Disneyland for a five-hour private party once a year -- a "Family Fun Night". Our whole family would go every Fall, for 20+ years I would guess. I was an infant the first time I went, and so was Kevin. I didn't actually go to Disneyland in the daytime until I was 11 or 12 years old.

Now Kevin and I go when I come home for my longer visits, so usually twice a year. That's really all he and I need. We have a pretty regular routine when we go due to some access issues...and some Kevin issues.

Don't get me wrong, Disneyland is great for wheelchairs as far as I'm concerned. They were one of the first theme parks to make an effort to work out an alternate entrance for wheelchairs, before the ADA laws even went into effect, I believe. Usually we'd just go in through the exit of a ride bypassing the long lines, but in the past we've gone through janitor's side entrances/closets, service elevators, and kitchens. Some of the alternate entrances weren't necessarily up to the Disneyland standard of the facade they usually maintained for guests, but if it would help get someone in a wheelchair into an attraction, they did it. Plus for regular Disnoids like us, it was fun to go where the regular public wouldn't see.

Because of the Park's age, there are some attractions that just can't be adapted, and that's OK as far as I'm concerned. But over time, they've added special boats to it's a small world and the Jungle Cruise. And special seats and ramps for the Carousel and the trains, things like that. Now, they've designed so many of the new attractions to have special wheelchair accessible cars in neat little special loading areas. The only bummer is that newer queue areas have to be built to be accessible, so we have to wait in lines again! If we go on those rides, anyway.

We tend to stick to the classics, so we have our own entrances and special lines to wait in, so we can usually do what we want easily in a day's time. We're in no hurry, so we'll go to shows and we'll visit with people waiting in line with us. And there's an instant rapport with the other groups who have family member in a wheelchair, particularly because you will run into each other a lot during the course of a day: in lines, in the special areas along the parade routes, or the wheelchair seating at Fantasmic.

If we're talking with other regular visitors, we'll exchange notes on recent or upcoming adaptations, and swap little tips such as making sure that the line attendant at small world knows if you can transfer or if you need to stay in the wheelchair and use the special ADA boats. On that ride the special boats (nicknamed the Yellow Submarine and the Pink Cadillac) move with the flow of all the others, so if you miss one, you have to wait the full length of the ride for it to come around again. So, in our already short line -- which has gotten longer in recent years -- Kevin and I will still often get to cut ahead.

If we chat with tourists, we'll point out the other adapted rides and tell them about the "secret" bathrooms, as Kevin calls them. We'll chat about wheelchairs and the best times to hit an attraction when you're in one. Or when to stay away because the pedestrian traffic will be so crowded, it would be too hard to negotiate a chair.

Several years back, we discovered, quite accidentally, the specially equipped boat for wheelchairs to ride on the Jungle Cruise. Kevin hadn't been on that ride in probably 15 years. When he was younger, we could carry him down into the boat pretty easily, but as he got older, he just would spaz out (literally), and it became way too difficult to get him in and out of the boat. But we rode the Jungle Cruise that day, and although Kev was a little shaky and clutched the bar of the ramp with all of the strength that left arm would muster, he had a nice time. And he wanted to tell someone official that he liked it. So on our way out, we went to Disneyland City Hall, so Kevin could let them know. I told him that he was the one who had to talk. There was a brief wait, but when it was our turn Kevin rolled right up to the counter and told the host that it was "really, really good" that there now was a wheelchair boat for him to use.

As we headed out to get back to the car, Kevin said to me, "I think they were glad I told them that."

A JC Penney Portrait

Who doesn't have at least one of these photos? In Monrovia, there was a free-standing JC Penney on Myrtle Ave. Our dad worked there when I was little. It had a main floor and a basement. I can still see how the staircase wound downstairs in the middle of the store. The photos were taken down on the lower level.

My mom would get us matching outfits, and our cousins would generally get their photos taken at the same time. Often these photo outfits were our Christmas outfits as well.

This one was taken probably in late 1972 judging by my haircut. Kevin would be about 19-20 months old, so his cerebral palsy was probably just diagnosed in the few months before this photo was taken.

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.

And the Winner Is...The Dark-Haired Girl From Speed

Many movie reviewers have their 5-star rating systems, and Siskel and Ebert had "Two thumbs up." Kevin's indicator of a great movie is one that he wants to buy on DVD right after he has seen it in a theater.

Back in November or December, Kevin called one day after going to the movies.

Kevin: We were too late to see "This Is It" so we saw the movie with the dark-haired girl from "Speed."
Laura: Oh, "The Blind Side"? How was it?
Kevin: Good.
Laura: Is it one to buy on DVD?
Kevin: No. It was good, but I don't need to buy it.
Laura: Did you like it at least?
Kevin: Yeah, I liked it. But the girl had blonde hair. It was disturbing.
Laura: Sandra Bullock had blonde hair? Well it was just a wig probably.
Kevin: I don't know, but I think of her as the dark-haired girl from "Speed."

Kevin Michael Malaprop

I believe one of the reasons that Kevin has always fallen between the cracks in the "system" is because of his verbal strengths. By all physical definitions Kevin is severely and permanently disabled. He can't walk or stand on his own; he only has gross motor use of his right arm and hand; and even his left hand, while his strongest limb, can be a little clumsy at times. He has severe muscular issues and considerable spasticity in his lower body, but Kevin doesn't exhibit the severe facial spasticity that so many people with cerebral palsy have, so when you first meet him, you might think he's only (only) been in a car accident or something and that's why he is in the wheelchair.

No one ever talked down to Kevin when we were growing up, or treated him like he was unable to understand things, so he's developed an excellent vocabulary and as he's gotten older, he's learned (with a little coaching) how to express himself more clearly. (And his phone messages now are usually succinct and often quite delightful.) He has a very dry sense of humor, and he picks up a lot when observing others. He likes to talk and visit, so it may take a little time when conversing with Kevin for it to sink in that his disability is not just physical.

Kevin does have some mental delays (I used to say he was mildly retarded, but I don't want Sarah Palin on my ass, so I won't say that anymore.) There are processing and coping issues, and numbers and money just aren't his thing. Remember "Rain Man"?

Doctor: Ray, do you know how much a candy bar costs?
Raymond: 'Bout a hundred dollars.
Doctor: Do you know how much one of those new compact cars costs?
Raymond: 'Bout a hundred dollars.

OK, so Kevin isn't quite that extreme. He has a general grasp of money and numbers. He know that he needs two quarters to get a cup of coffee at his workshop, and he knows that $20.00 is enough to go to the movies. He called me quite excitedly when he first was working and got some of his first paychecks, and the conversation went something like this:

Kevin: I got another check today and it is really good. I made a lot of money.
Laura: Really, how much did you make?
Kevin: I made (reading the numbers on the check) "seven four six two." That's more than last week; I only made sixty-eight last week. That is a lot isn't it?
Laura: Yeah, buddy, that's a lot. That's absolutely great!

And Kevin can get a little mixed up with his vocabulary at times.

When he was living in Washington and I was in California, he or my mom would call a couple of times a week. I got home one night and I was going to give them a call, but I decided to wait a little longer to see if they called first (so the call would be on mom's bill). Sure enough, the phone rang about 15 minutes later. I picked it up and, indeed, it was Kevin.

Kevin: Hello, Laura. How are you?
Laura: I'm good, Kev. This is so funny, I was just going to call you, but you called me first.
Kevin: Yeah, well, I'm a little bit psychopathic.

This past Christmas, I gave him Kelly Clarkson's newest CD. We listened to it a lot when we were driving, particularly blasting and playing "My Life Would Suck Without You" repeatedly. Well one day he got a bee in his bonnet about something, I can't remember exactly what...

Kevin: You know what I will do? I will play that song and say "You Suck!"
Laura: Um, Kev, that's not quite the point of the song.
Kevin: I do not care! It says "suck," so I can play it and that will show them!

Yup, that will show them, Kev. You go get 'em!

Gimps in the Gutter

One thing that anyone who is in a wheelchair can count on -- whether you're in that chair due to a broken leg or because of a disability -- you're going to end up dumped out on the ground at some point. An uneven curb, rocks, too steep a hill, even other people - all of these things can be your nemesis. But hopefully, those inevitable spills will make for a funny story a little later on...barring any concussions.

Most of Kevin's earlier, heavy duty wheelchairs had pieces in the rear at the bottom of the frame that you could use when you pushed him to make the chair pop a wheelie so you could get it over a small step or curb. Those chairs were solid back then (seriously I think one was iron), so for a teen-aged sister, it was a good place to hop on and catch a ride.

The street that Kevin and I grew up on was a pretty quiet little street, maybe 15 or so houses on it, with very little through traffic. Kevin had a friend that lived a few blocks from us, so sometimes I would walk over to pick him up and bring him home. It was a slight uphill walk from Michelle's back to our house, but once we hit our corner, there was just the slightest grade in the sidewalk running from East to West, so I'd hop on the back of Kev's chair to ride past the last five or six houses to our place.

And I was good, I'd get on the back stops, and lean over Kevin's shoulders and use the wheelchair brakes to keep us from picking up too much speed as we rolled down the street. Okay, maybe once or twice we dumped out on the lawn to stop, but for the most part, we'd get down the street unscathed.

Now once a year we had a hometown "Monrovia Days" parade for the city anniversary. It was about a 5-block walk down to Foothill Blvd from our house. One year I was in the parade, so I had to be there early, and everyone else came down to the route later. Well, by the time I had marched in the parade and gotten back to find my family, what do I find had happened? My mother, when walking with Kevin down to the parade route, had tried to ride on the back of Kevin's chair like I did. What she didn't take into account was the steepness of the hill, and she couldn't stop in time when they got to the curb and they wiped out in the street! They were both fine, just a few scrapes, and they just sat in the street howling with laughter, while other older Monrovia residents walked by clucking about the mother who dumped her crippled little boy out of his wheelchair into the gutter. Kevin still gets the giggles when he remembers that day.

My cousin Linda had a similar experience (actually she's the one who I have to thank for this post idea). Kevin was maybe 15 or 16 and he got a shiny, new, red racing wheelchair that was really lightweight. From what I remember it was a little low-slung and a tad hard to steer when you were pushing it. Linda wrote: "He and I walked down to the Mann’s theater from my apartment, and I tipped him over. We sat there with him on his side and cars driving by...no one stopping to help us, probably because we were laughing so hard. And the kicker is he told everyone that I put the first scratch on his new red wheelchair."

Now I can't ride on Kevin's chairs because they're too lightweight, or they have "wheelie bars" in the back to keep the chair from tipping backwards, so there's nowhere to stand anymore, but I can still see the view on our old street from the back of Kev's chair as we would ride down the sidewalk laughing and hoping we wouldn't crash and burn.

A Kid's Eye View

Little kids have always been drawn to Kevin. They like his wheelchair and going for rides in it. They like it when he sits on the floor playing with them, and they like to climb on him. He's down on their level. And Kevin still genuinely likes to play with cars or blocks once in a while.

I have five teenaged cousins who came along when Kevin was in his early to mid 20s. What's been interesting to me is watching as the kids grow from toddlers to teens and they really begin to observe Kevin. As they get to be around 4 or 5, they start to question why Kevin doesn't walk. The simple explanation is that Kevin's legs don't work like ours. And a 5 year old will accept that and move on. That's just how Kevin is.

By about 8 or 9, you can see them watching Kevin, seeing him playing a card game on his own with the other adults, but then needing someone to help him read directions for a board game that the whole family is playing, or maybe he needs help cutting the meat on his dinner plate. Kids get that Kevin is a "grown-up," but something isn't quite the same as with the other adults. As they reach 11 or 12, you see them starting to make little offers of help (maybe with a little prompting), particularly at the dinner table, offering to pour Kevin a drink or helping to serve him some food. They're OK when someone gives Kevin a little extra help playing a game.

Then by 14 and 15, the kids just seem to get it. They start to take a different interest in Kevin, ask how his wheelchair comes apart, watch as I help him transfer into the car things like that. They help bring Kevin in and out of the house, hold his wheelchair if he needs it, move pieces of furniture out of the way so Kevin can get through a narrow space, offer to get him a drink, assist with a game, all the things that he needs a little extra help with, but they understand that Kevin fits in a special category, and they never treat him condescendingly.

What I wonder, sometime, is what Kevin thinks as he sees babies who crawl grow into toddlers who can walk, then run, then drive and such when he can't. I should ask him sometime.

I Would Like to Help Other Wheelchair People

As many of you know, Kevin and I, along with several other family members, will be walking in a 5K over Easter weekend. It's a fundraiser for an organization in California called AbilityFirst. They sponsor programs for disabled kids and adults including a camp in the San Bernardino mountains. Kevin and his team - dubbed "Blue Wheels" - have earmarked the donations we have received to specifically help out his camp. So far we have raised over $2200.

Tuesday night I got a message from Kevin that he had some things to report. So I called him and we chatted a bit about the 5K and some of the things we still need to take care of. He is currently working with the counselor at his workshop to ask for sponsorships there. He told me they are doing a "bang-up job" getting donations.

So then I let him know that I had launched this blog. His response was a simple, "Good, good."

Then he says to me: "You know...is there some way we could get some video, you know, of me getting in and out of my bus? I mean you are out in New York, but maybe we could get someone to film me and you could put it on the computer. I think it would be good to show how to use the ramp...and how easy it is to get on and off a wheelchair bus...how they do the tie-downs...you know. I would like to help other wheelchair people."

Have I mentioned yet how much I love my brother?

This Is Your Brother, Kevin Ware

Kevin and answering machines. Not the best combination for a number of years. When I was in grad school at San Diego State, Kevin was about 16 or 17 years old, and he was just starting to call me on his own. I would often come home to a message on my machine that would sound something like this: "Um...hello, um...Laura? Uh...MOM! It's the answering machine! What do I do?" (From somewhere in the distance, I would hear her say something like, "Just say 'Hello' and tell her to call you back.") So he'd stammer out, "Uh, hello, Laura...uh...call us back." And he'd hang up.

This went on for a while and then our mom must have told him to announce himself, just tell me he was calling. So the phone messages evolved into less terrified, but still halting messages like "Um...uh...hello, Laura. Um...this is...uh...your brother...uh...Kevin Ware. I am calling to say 'Hi.' Um...call me back."

And soon the stuff of legends was born. "Hello, Laura, [in staccato monotone] this-is-your-brother-Kevin-Ware. Please-call-us-back." I think he'd started practicing before he would make the call.

When we would talk, I'd tell him that he didn't need to leave all that detail. After all I only had one brother who would be calling me, I only knew one Kevin, and I recognized his voice. But, no, from then on, I was greeted on the answering machine by, "This-is-your-brother-Kevin-Ware."

I was doing a production of Sweeney Todd at the time this was all happening, and - surprise - I was sharing the stories of Kevin and the answering machine. One night in rehearsal, we were working on the Letter Quintet, which one man begins by singing, "Most honorable Judge Turpin..." He was singing it a little too staccato, and our director went up onstage and said, "No, smooth it out. Not 'Most-hon-o-ra-ble-Judge-Tur-pin.'" Then the director paused and sang, "This-is-your-brother-Kevin-Ware." We all howled!

Kevin will still do this once in a while. It became a bit of a joke between us and my friends and family. Now he usually just says, "This is Kevin Ware" and he's positively breezy when he leaves messages. But almost everyone I know, when they ask about him, will say, "So how is your brother, Kevin Ware?"

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.