My name is Stephen but you can call me whatever you want. My mom and dad call me the King of Nicknames. I just like when people talk to me in a way that I can understand. Words aren’t so important to me either. I love the time I spend with my family and friends. I think life would be boring without them.
I love to go places and do things – except shopping. I don’t like shopping. I like to ride in the cart but mommy won’t let me poke holes in packages or chew on the stuff she’s buying. There’s all this stuff piled in the cart around me but I’m not supposed to touch it.
I love to go to the park. We don’t have to stay all day. I get tired pretty quick but it’s so much fun! I can swing all by myself now but I still like it better when you push me. Most of all I like when you play with me and have fun at the park too! It’s fun to see mommy and daddy on the swings or throwing pebbles in the stream.
I like when you show me what you’re doing. I especially like it when you show me how you do things I don’t know how to do myself. I love to learn new things. I like when you tell me I can do it myself – sometimes I’m not sure if I can.
Mommy says I’m quite the little character. I like it when she says that because I know she doesn’t mind me being different. I started having seizures when I was just a little baby. It was very scary for my mom and dad. It was scary for me too.
I still remember the quiet of deafness. I couldn’t make out the words but I could hear the tune like a song. Most people don’t understand, but my family and friends know. They were with me in the hospital when I was sick. They were with me at home when I was healthy too. It’s hard for people to really understand me if they only know part of it.
I remember the darkness of blindness too. It’s not something I can tell you, it’s more like a feeling. I don’t remember ever being scared of the dark. I think the dark is nice like my cuddly warm snuggie blanket.
I was 3 years old when I started walking. I remember noticing everyone moving around me while I sat and kicked my feet. It’s still like that sometimes. The world seems to rush around me, I just keep trying to move forward without getting knocked off my feet. When I play on the playground with the other kids sometimes they don’t notice right away that I’m different.
I want to play with the other kids but I don’t really understand them. Sometimes when I touch them to say hi they get mad. I like being around other kids like me. I know a lot of kids can do things I can’t do, but a lot of kids can’t do what I can do. I want the kids who can’t walk, or talk, or hear, or see to know I’m not afraid of being their friend.
I don’t like when people try to tell me what to say or what to sign. Most of the time they don’t really know what I’m thinking. If they do know what I’m thinking then why do I need to tell them? I think it’s annoying. They want me to be boring but I want to be funny. I love to make people laugh and smile. It makes me happy.
Sometimes the world is so noisy and bright now. There’s just so much to see and hear I don’t know what to look at or what to listen to. I really love music and bright lights but I also love quiet time. It’s easier for me to understand what’s going on when it’s quieter. When it’s noisy and there is a lot going on I like to listen to music on my iPod or play a game on my iPad. It gives me something to do while the world rushes and spins around me.
I would like to have more friends like my old neighbor Isaac. He’s my best friend. He knew me since he was a baby and he understands me even though most normal kids don’t. We’d sit on the porch swing together or he’d just stop by and visit. Sometimes we would have a snack together. He didn’t mind me not talking.
Isaac’s dad is my uncle Rickie. My dad calls uncle Rickie his brother from another mother. I don’t know what that means but I think it’s funny because they’re always smiling and laughing together. Isaac’s mom Charise is my mom’s friend. Sometimes it would be just us kids and our moms together. I sure miss having them for neighbors.
I don’t mind sharing all my toys. I’ll even share my iPod and my iPad and those are my very favorites. Maybe someday we could get a house with two families and a yard. Then I’d have someone to play with when I’m home. I’d get a little dog maybe a calm furry one or a playful hot dog. I’d name him Bingo.
I love my cousins. They’re my friends too. I love it when dad carries me. My legs and feet get so tired. The leg braces help but I still think it’s nice when daddy picks me up even though I’m getting big. I want to learn to use the potty. The diaper makes my but itchy. I want to wear boxer shorts like daddy and I want to be as tall as him too.
I sure hope my story wasn’t boring. I don’t like boring stories. I like happy stories with singing and stories with fun surprises. I’ve never seen a rainbow in the sky. Mommy and Daddy have shown me one but I couldn’t really see it. I have seen a real life miracle though. Some people have never seen one but I believe miracles happen every day.
Like when my sister was in a car accident. She slept for days. I couldn’t wait for her to wake up so I could go in and visit instead of sitting in the waiting room at the hospital. I don’t like waiting. The doctor didn’t think she’d ever wake up. But she did and mommy says she’s a living miracle. I love my sisters even though they’re big and I’m still little.
I’ll be big someday too – like my big brother. He loves to play outside as much as I do. I love it when he takes me swimming. I want to be a good swimmer like him. He likes to play on his tablet for hours and I love to play on my iPad too. I think it’s kind of the same thing.
I love my aunts and uncles and my grandparents – I love all my family. I especially like hugs and two kisses both at the same time on both cheeks – one from mommy and one from daddy or one from mommy and one from auntie! I love funny sounds.
I have so much to say but I don’t know how to say it. Mommy says if I learn to communicate it will be like having the remote control for the tv. I’m happy without talking but I think it would be fun to press all those buttons!
Love, Support, Educate, Advocate, Accept… by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.