Been Away Too Long!

It has been over two years since I posted anything here! Two years! It's been so long, I couldn't even remember my login info. Where did that time go?

I know part of what happened. I was working really hard on the fundraising for the 2010 AbilityFirst 5K with Kevin, and I was fried. It was three months of really hard work leading up to one big, exhausting day. Then I moved and was living in sublets and lost my sense of routine for several months. Then I moved again and just never got back to this project. I thought about it a lot, but never made the time. I've kept little scribbled notes here and there, Kevin has since turned 40 (and 41), we've had some adventures with new stories, and now I foresee some time this summer to reinvigorate this blog. I was surprised to see that I've actually had some visitors to the blog in all this time gone.

I've talked several times to Kevin this week, and tonight he said something that cracked me up, so I decided to Tweet it. Yes, I'm on Twitter now (@JeannieBWare). So I created a hashtag #MyBrotherKevinWare and decided that I would start using both the blog and Twitter to get going again.

If you've never been here, I hope you'll read through some of the old posts. And for those of you who were so supportive two years ago, I hope you'll enjoy the new round of stories coming soon.

Oh, and what he told me tonight was this: "Well, you know...honesty is the spice of life."

I guess we should all keep that in mind.

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?

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.

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!