Many of you know me in some sense or another, but not all of you know my family. Sure I talka bout Geoff and the kids all the time. I frequently mention our zoo and occasionally mention my parents or neice, but rarely do I mention anyone beyond that.
In reality this might be fine or normal for other people, but for me and my family this is actually an injustice. Kevin is really important in my the life and the life of all of family. He calls us nearly daily and hopefully will someday live by us. I guess I should explain...
Kevin is one of my two older brothers. There are three of us total. We are all 5 years apart and Kevin is the middle child. He has always been a part of my life and always will be. I've never known anything else. For me this has been both a blessing and curse. Ok, yes, all brothers are a blessing and curse to some extent, but Kevin is different. Really different.
I'm his sister and I've never found the right way to describe my brother. One Dr. described him as Swiss cheese...you can be on the same plane with him and both having a meaningful conversation and then suddenly you fall through a hole. Others have described him as Forest Gump-like. Personally, I hate that description, yet I found myself using it yesterday. I actually walked out Forest Gump in the movie theater because it was too hard for me to watch, esp. when I heard giggling and my brother's name in the movie theater.
There have been many other descriptions of Kevin over the years and if you are getting the just of where I'm going with this, many of them have not been nice. That's just how it is, kid's aren't nicked sometimes, parents aren't nice.
I often wonder how different things would be if Kevin had something socially recognizable like down-syndrome. Would that have made him more socially acceptable? Would the characteristic visual appearance allowed people to associate him their perception of people with down-syndrome as sweet little puppy dogs?
Even though I was five years younger than Kevin, I grew up defending him and beating other kids up for making fun of him. I won't lie, I was glad for a variety of reasons when Kevin went to junior high and we were finally in separate schools.
That's how my life with Kevin is...it's full of love, embarrassment, anger, frustration, compassion, and hurt. I can't speak to what his life is like.
As I previously mentioned, I was describing Kevin yesterday. I was at chemo and talking with my beloved NP. We grew up close to each other and we were talking about people we knew when we stumbled on a mutual contact. Next thing I knew I was explaining my relationship to this person. I had no problem explaining it was someone I knew because of my brother. That was simple enough, but when I actually had to say who my brother was, I hesitated. Then I found myself explaining myself. Enter the guilt.
It's just that it's hard to mention Kevin without an explanation. It's even harder because Kevin knows EVERYONE! He is a social butterfly. While, I tend to think of myself as an introvert, Kevin is the polar opposite. He'll talk to just about anyone. He loves to be a part of social gatherings and he's always on top of the latest gossip.
In fact I sometimes think that's why I'm an introvert. It's a coping mechanism, because I live in fear of what and how much everyone else already knows about me. It's a blessing and a curse.
Again, I love my brother. There is so much I have learned from growing up with someone who dances to a different drummer. In reality, if everyone had a little Kevin in their life and had the patience to appreciate his gifts, the world would be a better place.
No one has a great explanation for Kevin. The general consensus is that he had anoxia, or lack of oxygen, at birth. The midwife in me says he was a big baby and probably the victim of shoulder dystocia or cord compression when he was born. Today either of these would pursued by the insurance company for malpractice, but in 1972, our society wasn't nearly as litigious.
None of that matters because that isn't how our parents are. They have never looked for someone to blame instead they had always strived to find an understanding so they could help Kevin be the best he can be. They were to told to institutionalize him as an infant and refused. They were told he would never read or write or do math, and you know what, the experts were wrong.
My parents, especially my mom has dedicated her life to making the world a better place for Kevin. She worked carefully with his early childhood and special education instructors when he was younger and fought major battles to mainstream him as he got older. She is basically my hero. She went above and beyond to find methods to teach him at home and to balance being himself and "fitting in" as much as possible.
Meanwhile she dealt with endless slack from me because I didn't always understand why she didn't focus all of her efforts on making him fit in. It would have made my life easier. It was hard having birthday parties, esp. sleepovers when your friends don't understand and therefore, don't like, your brother.
Again this is where we could all stand to have some Kevin in our world. Kevin is fun and unique, but it's taken me a long time and a lot of maturity to appreciate that. I won't lie, I still don't always. We still fight like cats and dogs at times.
I don't understand Kevin's world and he doesn't understand mine. Currently one of our hot spots is him telling me how hard it is to have a sister with cancer. I know he's concerned and I understand all that he has at stake (more on that later), but I've explained that I can't be his main source of support and needs to talk to someone else about his frustrations. This makes him very angry with me because he thinks I'm being selfish and inconsiderate. He doesn't understand my perspective and I don't think he ever will.
At the same time cancer has turned his world upside down. Maybe more than everyone else's. My dream home has always included a separate apartment for Kevin. This way he can be close and I can support him in the ways he needs support, but we can all have the privacy we crave (as social as he is, Kevin very much likes his privacy and space). Unfortunately thanks to cancer we have no idea how it will all turn out.
In the meantime Kevin lives at home with my parents. He drives, he works, and in many ways he's independent. In many other ways he isn't.
Driving...that's actually a funny story. Our parent's never put Kevin in drivers ed or planned on him driving because they weren't sure he could handle the responsibility. Kevin didn't approve so he registered himself for driver's ed. He pleaded his case to our parent's and got their consent to take lessons. He got a very hesitant "we'll see" to him actually getting his license so he paid to use one of the driver's ed cars for his driver's test and had one of his instructors drive him and next thing any of us knew, Kevin had his license.
This is just how Kevin is. Just when you think you have him all figured out, he shows you. He really is a character.
Oh, and our parent's weren't trying to be mean by not letting him get his license. The opposite actually...they just weren't sure driving was a good idea with the temper tantrums and emotional instability that are unfortunately a part of Kevin's world. Don't judge, who knows what you would be like if you were chronically overshadowed, picked on, and dismissed the way Kevin is...even by his own family, at times.
I probably struggle with Kevin more than anyone besides my parents. I always want to make him happy, but sometimes that doesn't coordinate with my own expectations of situations. I want him to feel included and to be able to be himself, yet I hate the embarrassment of having a brother who talks a little too loud, stares a little too long, asks too many questions, or talks about things that I might find taboo.
It's made it hard with friends and even harder with family. I have plenty of family who don't understand my relationship with Kevin. It's easy for others when they aren't in as deep and don't see the whole picture.
The reality is I'm always trying to balance in a little relief for my parents, who have never been empty nesters and making Kevin feel special. Geoff and my wedding was actually Geoff, Kevin's, and mine. Geoff and I got married in Door County, WI. One of Kevin's favorite places to visit. We had a weekend-long party and planned special events such as hiring out an entire performance of a play because it had significance for Kevin. Our weekend served double duty. It was special for us, but equally important, it was special for Kevin.
Our children are both actually named after little towns in Door County. That was mostly us, but a little for Kevin too. It's given him great pride. He loves E and Ella like no other and I have vowed that I will do whatever it takes to bring my children up realizing what a gift they have in their Uncle Kevin. Right now it's fun because while Kevin is an adult, but he has a childlike innocence that only the kids can relate to.
Assuming I'm feeling up to it, we are hoping to take a road trip to Colorado/Wyoming in late May. We want to take the kids to Mt. Rushmore, Yellowstone, and visit my god-mother. We decided on this as a vacation because then we could also take my parents and Kevin. At first Kevin said he didn't want to go and I was crushed because I wanted him to have this vacation with my kiddos. I have grand plans of making photo memory books and making it a vacation for all to remember (in a good way, of course).
And this is it...this is who I really am. I'm constantly balancing my needs with the needs of my family...and that family includes my brother (I love my other brother too, but he has his own life and his own family...). Kevin is a huge part of who I am. I want to share him with you because he is special in so many more ways than anyone can imagine and even I don't always appreciate that. I'm ashamed that I get embarrassed and don't always openly embrace him for who he is.
And if you ever meet him and want to know some of his great loves beyond Door Co. and gossip...he loves theater (he has season tickets to his local performing arts center), basic history, art, and coffee.
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