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My Little Brother Joshua May 21, 1990  ~  November 8, 1997 born with half a heart, and he lived seven years with all of it about josh ~ his favorite stuff ~ joshua-isms ~ the hospital ~ the cake ~ my poem ~ for brothers & sisters

Hi. My name is Jami and I'm sixteen. This page is for my little brother Joshua, who everybody called Josh except Grandma, who called him Joshua James every single time, like he was in trouble. He was seven years younger than me. He was born with a heart defect called hypoplastic left heart syndrome, which means the left side of his heart, the side that's supposed to pump blood out to the whole body, never grew right. Basically he had half a heart. The doctors fixed it the best way they knew how, with three big operations before he was four, and it worked, mostly, for seven years. Then in November 1997, when I was fourteen, he died in his sleep. He went to bed on a Friday night after watching TV with me on the couch, and he didn't wake up. The doctors said his heart just stopped, and that it can happen with kids like Josh even when everything seems okay. Nobody did anything wrong. It took me about a year to believe that. It's been almost two years now. I made this page because I don't want people to only remember the sad part. He was the funniest person in our family by a mile. I want people who never met him to know who he was, and I want other kids with a brother or sister like him to know they aren't the only ones.

Josh's Favorite Stuff The Power Rangers. The Mighty Morphin ones. He was the Red Ranger, always, and if you tried to be the Red Ranger he would explain to you very patiently that there is only one Red Ranger and it's him. He had the costume from Halloween when he was four and he wore it to the grocery store, to church (once), and to two checkups, where he karate-chopped the blood pressure machine. The Lion King. We wore out the tape. I mean actually wore it out, so it got all wavy in the middle, and Mom had to buy another one. He knew every word. He roared at the nurses. He made me be Nala and our dog be Pumbaa, and our dog did not enjoy it. The parking lot. Josh had sixty-three Matchbox cars and a parking lot I drew for him with markers on a big piece of cardboard, with lines and a gas station and a car wash. He parked every car in the exact same spot every night before bed, in order, and he knew if you moved one, even an inch. His favorite was a little yellow school bus with a bent wheel that only went in circles. He said it was the bus for kids who didn't want to go to school. Other stuff: macaroni and cheese (the orange kind, from the box, not Grandma's), chocolate milk with a bendy straw, knock-knock jokes that didn't make sense, the ice cream truck, garbage trucks (he wanted to drive one when he grew up, and also be a heart doctor, at the same time), and burping the alphabet, which I taught him when he was five, and which Mom has never forgiven me for. He could get all the way to M. I'm still proud of that.

Joshua-isms Things Josh said that our family still says. If you come over to our house you'll hear these and nobody will explain them to you, so here. "The hostipal." Never hospital. Hostipal. Even my dad says it now. "Pasghetti." Obviously. "My zipper." His scar down the middle of his chest, from the operations. He showed it to everybody. He told a lady at the mall that he had a zipper because his heart was so big they had to let it out. "I'm not sleeping, my eyes are just resting." Said every night on the couch, with his eyes closed, snoring. "Thanks for the yummy." What he said after every meal, even school lunch, even hospital Jell-O. "That's a no-thank-you." What he said when he didn't want something. Broccoli. Shots. Bedtime. It is actually a very polite way to say no and I recommend it. "See you in the daylight." What he said instead of good night. We all say it now. My mom says it to me every night, and I say it back, and we both know who we're saying it to.

The Hostipal (the way Josh saw it) Josh spent a lot of time in the hospital, especially when he was little. His three operations have names, the Norwood and the Glenn and the Fontan, which my dad says sound like a law firm. He had the first one when he was only a few days old and the last one when he was three, so he didn't remember most of it. I remember it. I was seven and eight and ten and I mostly remember vending machines and my grandma's car. But he went back for checkups all the time, and when he was older, if you asked him about the hospital, this is what he'd tell you: There's a playroom with a fish tank, and one of the fish is named Bob, and Bob is the boss. Nurse Sheila blows up the rubber gloves like balloons and draws faces on them. Josh had a whole family of glove people taped to the wall. The thumb is the hair. The echo is when they put cold jelly on your chest and you get to watch your own heart on TV. He thought this was the best TV show there was. You get to ride in a red wagon instead of walking, if you ask nice. The beeping machines all have different songs, and he could tell you which was which. The red Jell-O is better than the green Jell-O. (Thanks for the yummy.) Shots are a no-thank-you. He was braver about all of it than I would ever be. He said if you squeeze somebody's hand really hard, it doesn't hurt as much. It was usually my hand. I didn't mind.

The Cake Every year on May 21 I bake Josh a birthday cake. Chocolate, with red frosting, because the Red Ranger, and a Matchbox car parked on top. Not the school bus. Nobody touches the school bus. The first year, 1998, I was going to skip it, because I thought it would be too sad. Then the night before I couldn't sleep and I got up and baked it at one in the morning and frosted it in my pajamas. My mom came down and saw it and didn't say anything, she just got out the candles. So now it's a thing. This May he would have been nine. We put nine candles on it and Dad lit them and we sang, all three of us and Grandma, and then we said "thanks for the yummy" and ate the whole cake. His best friend Aaron came over and had two pieces. Aaron's going to be in fourth grade now. He comes up past my shoulder. That's the weirdest part, seeing the kids Josh's age keep growing.

A poem I wrote (for English class last spring. I got an A, but that's not why I'm putting it here.) Parking Lot Sixty-three cars in a row, the yellow bus still bent. I park them every night the way you did before you went. You had half a heart, they said. Nobody told them, Josh, the half you had was twice the size of anyone's I know. So I leave the porch light on and say it in the dark, the thing you always used to say: I'll see you in the daylight.

For Other Brothers and Sisters If you're here because your brother or sister was born with a heart problem, or is really sick, or died, this part is for you. I'm not a doctor. I don't know anything about your brother's heart or your sister's sickness, because every kid is different, even kids with the same thing. So the most important thing I can tell you is: ask your mom and dad, and ask the doctors. They will not think your question is dumb. I used to be afraid to ask stuff because I thought everybody would think I should already know. Josh's cardiologist told me once that I could ask him anything, any time, and I wish I'd started doing that a lot sooner. The other stuff I learned, the not-medical stuff: It's okay to be jealous. When your brother is sick, everybody pays attention to him, and your birthday party gets moved because he's in the hospital, and you feel like a terrible person for being mad about it. You're not a terrible person. Every brother and sister feels that. Tell your mom or dad. Mine had no idea how I felt, and when I finally told them, they made time just for me. It's okay to be scared. And it's okay to be happy and goof around even when things are scary. Josh liked it better when I treated him normal. Burp the alphabet. He'll love it. It's not your fault. Nothing you said or thought or did made your brother or sister sick. I needed somebody to tell me that, so I'm telling you. Talk to somebody. Your parents, a grandparent, a school counselor, a minister, a friend. After Josh died I didn't talk to anybody for a long time and it made everything worse. The counselor at my school was actually really nice. Who knew. You can still have fun. Two years later I laugh about Josh every day. You're allowed to. If you want to write me, you can. I'm not an expert, I'm just a sister. But I'll write back.

People who came to meet Josh: Write me: [email protected] Last updated September 18, 1999 See you in the daylight, Josh.