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Shattered

I won’t be saying much for a while. My younger brother Daniel died last night, unexpectedly. He was 28. I feel melodramatic saying this, but I never knew before that a broken heart actually physically hurts.

I wish there were more to say. I wish it hadn’t happened. The time that being an atheist is hardest is when I need someone to yell at, to blame, but it isn’t anyone’s fault. I don’t believe in fate, I don’t believe in people being sent to this world to teach us anything, and I don’t believe that he’s better off dead. He was a very important piece of my life, even though I didn’t see him much lately, and I will miss him terribly.

Family fun

One of the ways my family shows that they care about you is by picking on you. This has served me in good stead in my marriage, since his family does the same thing.

The first time my grandmother met Xander, we spent some time one afternoon reading. It isn’t considered rude in a family addicted to books. As the afternoon moved towards evening, she started saying things like “You should turn on a light!” and “You know, eye strain will make you go blind.” We had more light on our side of the room than she did on hers, so we kept repeating that we were fine and had enough light. Xander made dinner that night. My mother said, “This is really wonderful! Don’t you think so?” to my grandmother, who replied, “Just think how much better it would have been had it been made by a sighted person!”

Xander’s oldest younger brother used to call and, if I picked up, say, “I don’t want to talk to you! Is my brother there?” He’d only talk to me if Xander was not available. It took me a little while to figure out that he was picking on me because he liked me, not out of dislike. Now I tend to say, “No, he doesn’t want to talk to you. You have to put up with me for a while first.”

“You’re funny…funny looking!” is often the response to jokes, and I’ve been forbidden to tell his sisters that he loves them because that’s not the job of an older brother. They should know he loves them because he picks on them so much.

I, of course, tell them. I’m awesome that way.

Xander and I call each other names a lot. One will start it, and it doesn’t end until one of us can’t think of another name or I’m laughing too hard to keep the game going. It sounds weird on paper – “Twerp!” “Jerk!” “Twit!” et cetera – but in person it is hilarious. It’s an expression of love to try to come up with a more obnoxious name for the other person. It’s a little twisted, but it works for us. I think it also works as a stress relief – we can call each other names without hurting feelings, and it always ends in laughter.

The first time people meet us, sometimes they think I’m not very nice. Sometimes they think he’s not very nice. Depends on who is more “on” that night. Eventually, though, they see us when we’re both awake and energetic and they understand that we pick on each other constantly, with no malice involved. One person’s comment was “I guess it never gets boring when you’re together, does it?” It’s a lot of fun. I think some of our interaction may be based on the fact that he’s an older brother and I’m a younger sister – the only way to survive the constant barbs in my family was to get pretty quick, and he, being the oldest, was the target for his younger siblings. We both grew up picking on other people in different ways. We compete to an extent (we can’t play Cribbage anymore because we got too competitive) and we push each other.

There’s freedom in it, too. I can talk to him about anything, however strange. He can say “You’re being silly!” and I won’t take it as him being mean, just an honest assessment of what he thinks. I can roll my eyes and claim a headache when he starts making math do things that I completely don’t understand. He doesn’t take it personally; he just explains it another way. We get to be sounding boards for each other. Because we talk so much about so many things and we both have large vocabularies, we’re wickedly good when we’re on the same team playing Taboo.

It’s good that my pain-in-the-neck tendencies are met (and sometimes surpassed) by his, and that they are actually a positive force in our relationship. If we start picking on you, please don’t take it personally. It means we’re comfortable enough around you to tease you, and that’s a good thing, especially if you can keep up. Unless you like puns, though, don’t get us started, because pun wars have been known to last for hours and make people physically ill.

Daniel

My younger brother Daniel has Down Syndrome. While I was growing up, the focus was on helping him, as it should be. I’ve noticed over the past ten years or so that people are recognizing the unique challenges faced by the siblings of people with disabilities.

Daniel was the focus of the family from the time he was born. I was almost seven, and I felt fiercely protective of him from the moment our mom brought him home. My older brother had threatened to run away if she brought home another girl, so when Daniel was brought home they had their bond, too. Since I don’t know my little sister well I will mostly leave her out of it, but she put as much time and energy and love into raising him that the rest of us did.

We reworked the house to adapt to Daniel’s needs. We lived in the top two stories of a three story apartment building, with the two stories connected by a spiral staircase from a bedroom to the basement. From that basement to the front door of the apartment stretched a road made of carpet where Daniel, with our encouragement (resulting in a lot of jeans with holes in the knees), learned how to creep and crawl. An overhead ladder was set up in what would have been a living room, and we all had calloused hands from swinging on it. We started home school about that time, too. That made me happy, since I didn’t much like people and I really didn’t appreciate my teacher not letting me read when I finished my work before anyone else. We did patternings, which taught Daniel how to move better and how to breathe more deeply.

I slept in the room next to his, and when he had night terrors I would get up to help him calm down. It got to the point where I’d wake up a little bit before he did so I could calm him as he woke up. I still hate being awakened by loud, strident noises. Adrenaline, while useful, is not a rush I need to wake up.

People often said “I’m sorry!” when we explained that Daniel had Down Syndrome. It made me furious. I didn’t want anyone to be sorry about him. He was my little brother, a wonderful person with a wicked sense of humor, and by saying they were sorry they seemed to be implying that I should be, too. Someone used the word “defective” in my hearing once and I yelled at them. I think they were a bit startled by that, as I was generally fairly well behaved.

I was sometimes embarrassed by him. He was terrified of ceiling fans for a while, and he’d hide under tables to get away from them. I’d glare at anyone who had the temerity to stare, but part of me wanted to pick him up and take him away where no one would judge him, or me, anymore. I never showed him that he embarrassed me, though. His feelings were, and still are, much more important to me than mine.

He knew he was different, and I saw it hurt him, and I couldn’t protect him. I still sometimes have nightmares about that.

I want the best for him. I want him to be happy. I wanted him to be fully part of the community, which was rather funny, in retrospect, because I’ve never been particularly good at that.

The most important graduation I have ever attended, far surpassing my own, was Daniel’s high school graduation. He was part of the class. He walked up with them, received his diploma, and walked out. I have never seen him so happy, never seen him smile so hard. He was shaking from the emotion when he hugged me, and I was very close to tears. I was deeply proud of him. He was a valued part of that community, that school, and that meant so much to me that I stumble when I try to explain it.

He makes his way through life with blocks I can’t fathom. My father once said that he would never be as proud of any of the rest of us as he was of Daniel, because Daniel had to fight many times harder to achieve the same things. That hurt at the time – however true it is, and I understand the feeling, I still wanted to be able to know that my parents would be as proud of me as they were of him. It’s an odd place to be, knowing where the sentiment comes from, agreeing with it on some level, but always wanting approval for what I worked so hard for, too.

I wasn’t angry at him growing up, but I was angry at the rest of the world and how cruelly he was treated, sometimes thoughtlessly, sometimes with complete awareness. Even now, the word “retard” makes me angry.

I think I took a lot of things for granted before he was born. I don’t take nearly as much for granted now. Everyone’s experiences are different, and often those experiences are not visible. Looking at me, people generally see someone reasonably smart and relatively confident, but underneath there is the person who still wishes desperately to protect a little brother from a world that doesn’t bother looking at him past what his face looks like. They make judgments based only on that and move on.

Having him in my life has changed how I see the world and, I think, made me less quick to judge. I try to understand people for who they are based on who they show themselves to be, without making quick assumptions based on appearance. I’m not always great at it, but I am always working on being better. I sometimes get burned because I trust too much, but I made a decision that I’d prefer that to hurting people by making assumptions.

Daniel is pretty stable these days. He lives in a good situation and seems to be happy, or at least content. When he and most of the rest of my family moved to another state, I thought long and hard about joining them, but eventually decided that I needed to make a life separate from them. It’s probably better for him to not have his big sister hanging over his shoulder and butting in all the time, anyway. I miss him a lot.

It’s an interesting journey, loving someone with a disability, and one that pulls reserves I didn’t know I had. I am still very protective of him, love him dearly, and would do just about anything to make his life better, but I also understand how much he changed our lives, and I can begin to understand why people said “I’m sorry” about Daniel. I still don’t agree with them, and I’m still not sorry he’s in my life, but he did drastically change how our family worked and how we lived our lives, and I can understand people thinking that must be a bad thing.

Grandma

My grandma is in the hospital today. She doesn’t know who she is right now.

I wanted to give her memories that might help. The likelihood of her ever reading this is very low, but I need to write it regardless.

Every year, we’d get to go to Disneyland. My grandparents lived in Burbank, so when we went to visit them, they’d take us. I don’t remember much about Disneyland. I remember one year being tired on the way home and Grandma sitting in the back seat so I’d have someone to fall asleep on. I also remember that they liked taking me when the Rose Bowl was going on because there were no lines. It felt like Disneyland was just waiting for us to get there.

We used to swim at the pool in their condo complex. One year I fell asleep on one of the chairs by the pool. When I woke up, I’d gotten sunburned on my shoulders, back, legs, and on the bottoms of my feet. Grandma teased me about that for a long time, but when it happened, she put lotion on me several times a day until I felt better. She only teased me a little while she was doing it.

I was raised mostly on classical music. My grandparents every year made us each a tape with music they thought we would like with a variety of music. They were my introduction to the Purple People Eater and the Yellow Polka Dot Bikini. They also introduced me to Alvin and the Chipmunks singing that highly irritating Christmas song, but we don’t talk about that.

She let me hang out in the kitchen while she cooked. I always liked that.

Grandma always gave the best hugs.

I never felt like I was a disappointment to her. That meant a lot in a family where I was always measured against my siblings and generally felt like I was found lacking.

I inherited her face. That sounds a little funny, but we have pictures of her, my mom, and me at similar ages, and we look amazingly alike. I wanted to be able to have a fourth picture there, to be able to see her hold her great grandchild, but that isn’t looking very likely on several fronts. The loss of possibilities hurts a lot sometimes.

When I brought Xander to meet her for the first time, she asked me if I thought it was all right to leave such a young man alone in the house. She couldn’t help teasing about something. She spent quite a while that same evening trying to get us to turn on a light so we wouldn’t ruin our eyes and go blind from reading in the dark. Xander made dinner, my mom complimented it, and my grandmother waited a beat and, with perfect comic timing, said, “Just think how much better it would be if he were sighted!”

My grandma encouraged us to do what we love. She didn’t care if we made a lot of money. She cared that we were happy, and she worried if we weren’t.

She wasn’t always perfect. No one is. She lost her temper. She got irritated when they took us to see the circus and we argued on the way back and forgot to say thank you. She was really mad that time, but I have the feeling, considering how awful we were when we argued, that we probably deserved it. She didn’t like my dad much, and all of us knew it. Our two sets of grandparents didn’t get along at all.

I don’t know her as well as I would if I lived nearer the rest of my family, and sometimes that is hard for me. I tried to talk her into doing an interview to tell about her life, but she didn’t want to. I get my stubbornness from both sides of the family.

Most of my memories of her are of silliness, snarky comments meant in the kindest way, and really, really good hugs.

She’s the only grandparent I have left, and I love her. She gave me a terrible sense of humor and the courage to show someone when I care about them, and she could make me laugh even when life was pretty hard. Come to think of it, my brother inherited that bit.

I don’t know what else to say. This is one of those “throwing things at the internet and seeing what sticks” posts, I guess. Does throwing spaghetti at a wall actually work? I always thought you’d end up with spaghetti behind the stove, which would not be good.

Mostly I’m worried about my mom right now, who is dealing with this in person and trying to keep the rest of us updated. Grandma probably isn’t too worried about much, even if we’re worried about her.

Life continues.

Children’s books

I have worked with kids off and on for much of my life. I love books. The combination of these two things means that I have read a lot of children’s books. Some I have memorized because I love them, like Goodnight Moon by Margaret Wise Brown and Where the Wild Things Are by Maurice Sendak. A few others have been memorized because the kids love them, including Brown Bear, Brown Bear, What do you See? by Eric Carle. I really like some of Eric Carle’s books, especially The Very Hungry Caterpillar, but some of his books just don’t stand up to quite as many readings as I’ve had to give.

I like having a copy of the books I love and an extra copy so I can share them. One of my favorites is The Paper Bag Princess by Robert Munsch. It’s a princess and a dragon story, but for once the princess doesn’t have to be rescued by anyone else. She’s strong, smart, and brave, and she recognizes stupidity when she sees it. She is an amazing role model. She stands on her own, does what she needs to do, and doesn’t put up with anything she doesn’t have to.

I grew up hating princesses. Not actual princesses, since I never met any, but Sleeping Beauty, Snow White, and their ilk irritated me no end. They were useless. When I was very little I wanted to know why they hadn’t just told Sleeping Beauty about the spindle problem so she could avoid it. It didn’t make sense to me that someone didn’t at least mention it. She never saw a spindle and no one ever warned her, so when it came time for her to prick her finger, she was clueless. That wasn’t completely the princess’ fault, but it seemed like a very bad idea to me. I never much liked happily ever after, either. Perhaps the princes were just as dim as the princesses, but I couldn’t imagine finding things to talk about with someone who couldn’t think well enough to realize that the dwarves might actually have a reason to tell the princess not to take things from creepy old ladies. Especially once the princess had already done it once. “Oh, it’s a different creepy old lady. It will be fine this time!” Really? “It’s my birthday and a terrifying person wants to take me away from everyone I know to give me a present. I’ll go!” I know four year olds with more sense than that. I have enjoyed some rewritings of fairy tales, especially Robin McKinley’s, because the princesses are people I can understand. I like smart, strong women, not simpering people who can’t or won’t do anything to protect themselves.

I’ve been reading the Pinkerton books to some kids lately. I hadn’t seen them before, but they are about a Great Dane named Pinkerton who gets into all kinds of interesting trouble. The kids love the books, especially when they get to read them to Nyx. They like telling her that Pinkerton is just like her except that she’s better at not knocking people over. That definitely amuses me!

I like reading with kids partly because I like seeing them get involved in the stories and think about the characters, partly because they are learning, partly because it’s a comfortable, good way to be close to someone, and partly because I love watching when they figure out that the things I’m pointing at and the words I’m saying are the same, and they can read them. One of the kids I’m around a lot right now is eight years old. She can just recently learned to read, and she’s gotten excited about it. It’s more fun for me when they are interested.

Anything by Graeme Base is on my list of books I love. Not only are the pictures amazing, the stories can hold the attention of almost any age. There are puzzles and things to look for in every book, but the basic stories are accessible for very young readers. I have spent hours poring over these books, working through the puzzles, and I have spent even more hours with kids curled up next to me, fascinated, as we read each book.

The most recent children’s book that made an impression, though, was Ian’s Walk: A Story about Autism by Karen Ritz. The narrator is Ian’s sister, Julie. She and her older sister take Ian, who has autism, for a walk to the park. Being a sibling of a person with a disability, I can identify with the discomfort that Julie feels at times, but I can identify even more strongly with the love that is clearly evident. The autistic behaviors are very well done and not overdone, which was good to see. The book doesn’t preach or expect the reader to feel sorry for Ian. I really appreciated that. It explains autism in ways kids can understand. I think it would be an excellent book for helping children understand differences. It doesn’t show all facets of autism, of course, but it is a very effective tool for teaching and it hits exactly the mixed feelings that can come from loving someone deeply and still being a little embarrassed by them. Ian’s Walk shows one person’s differences and reactions to them very well, honestly, and carefully. I usually felt anger at the world’s responses rather than embarrassment about my little brother, who has Down Syndrome, but there were a few moments, like when he was terrified of a ceiling fan and ended up sitting under the table at a restaurant, that it was hard for me not to feel a little embarrassed, even as I glared at the people who had the temerity to stare. I love my brother dearly and I am fiercely proud of who he is. I will get a copy of this book for our ever-expanding library.

I’m sure I will come up with other books that I feel you should know about, but that’s all for the moment.