day in my life feature image

A Day In My Life

A gentle nudge wakes me. Oh, mom, can’t I sleep a little more? I can’t hear anything except my own thoughts. I reach for my hearing aid headband, pull it onto my head, clip it into place, click it on. Come on, I hear, we gotta get going! Next, I disconnect the tube that connects my stomach to the pouch of food that hangs from a stand next to my bed. I do eat some stuff with my mouth, but with my jaw being so small, it’s hard to eat like everyone else. So, I take in most of my nutrition through this tube connected to my stomach. The stuff that flows into my stomach through the tube is kinda yellow, gooey and sticky.

I actually have 2 holes in my body that most kids don’t have. There’s the stomach one, and I have one in my throat, too. They call it a Trach, which is short for tracheostomy. Because my mouth is too small and so is the inside of my nose, the doctors had to cut a hole in my throat so I can breathe.

I can’t get anything in it, or I’ll choke or even drown. It has to be kept clean all the time, and I can’t just clear my throat like everyone else. I’m used to it because it’s what I’ve dealt with my whole life, but, yeah, it’s kind of gross and everyone stares.

After I finish getting dressed, the doorbell rings. It’s my nurse. A nurse comes at 8 every morning and spends the whole day with me. I have different nurses for different days of the week. Today, Dawn is here and she rocks, but one or two of them I really don’t like so much. Spending a day with someone you don’t like who follows you around EVERYWHERE is not too cool. The nurse has to stay with me in case I need help.

Even though my brother and sister go to the same school as me, I take a separate bus so my nurse can be with me. Except for the bus driver, she’s the only other grown-up on the bus. Like I said, Dawn is cool and all, but I sure wish I could even just take the bus to school without a nurse. Y’know, just to hang out with the other kids, without someone hovering.

I’m in a regular class. I look different and have a lot of issues that I have to deal with, but I’m as smart as other kids and can do the same schoolwork. But, I do have my nurse in the class with me. Except for my teacher, my nurse is the only other grown-up in the classroom, just like with the bus. Not only do I have all this stuff to deal with, I’m the only kid with a grown-up always watching me. Even when I go to the bathroom.

Every 3 hours I have to be fed through that tube. It’s also how I drink. So, in the middle of class, my nurse will help me plug in the hose to a bag of the food stuff or water. We’re pretty smooth about it now, but it’s still another thing I have to deal with and the other kids still stare.

Yeah, the whole staring thing. And the name calling. And the teasing. And the bullying. Everyday, at some point, someone will do those things to me. Both kids and grown-ups. I mean, how many kids do you know that grown-ups stare or point at? They do to me! I’d like to see anyone who teases me live my life for a day, and see how they feel! I bet they wouldn’t tease anyone else ever again. I wonder if they ever ask themselves why they’re teasing someone.

I’ve had 22 surgeries. 22, and I’m only 10! I don’t care how cool and tough you think you are, getting cut open is really scary. It’s scary before and after. Before I go in for a surgery, when I’m waiting and waiting for the day, I get really nervous and afraid. And then, afterwards, the healing takes so long, and I’m all bandaged up. And, it hurts so much!

This last one was a really big one. They had to cut a piece of my rib off and then attach that piece to my jaw to make it bigger. So, really you could say it was 2 surgeries at once. They attached it to my jaw bone with screws. Next time you scrape your knee or elbow, think about having your rib cut off and then attached to your face!

And, every time I have a surgery, especially the big ones, I miss tons of school. That might sound cool, but believe me, I’m not having any fun. My rib hurts, my face hurts, I miss everyone, and I still have to catch up on all my work!

So, just like everyone, I love recess. But, after a surgery I’m not allowed to go outside for recess. It’s too dangerous. If I get banged on my stitches or on the screws, it would be a Total Disaster, like my mom says. So, I don’t get to run around with my friends for weeks!

Guess what? I’ve never built a snowman. I’ve never gone sledding or ice skating or had a snowball fight even. Doesn’t that totally stink? Basically, I can’t be outside if it’s freezing because of my Trach. If you breathe with your mouth or nose, the air gets warmed up before it goes down into your lungs. But, the air going into my Trach doesn’t get warmed up before going straight into my lungs. So, my lungs would freeze if I go outside when it’s too cold. It’s pretty much the same deal if it’s too hot.

On Tuesdays, Wednesdays and Thursdays I have speech therapy. Before I do my homework, the speech therapist comes to our house and works on speaking with me. Not only is my mouth really small, but because of my Trach, I have to kind of force my air inside my throat in a certain way so I can talk. Yep, even talking is a pain in the butt for me.

I chill with my family at night, like everyone else does. But, y’know, then for going to bed, I don’t just put on my pajamas and brush my teeth. I have to have the food bag on the stand next to my bed with the tube attached to my stomach. I have to take my hearing aid and the headband off. If I need to go to the bathroom in the middle of the night, or get scared and want to go to my parents’ room, I have to remember to unplug and turn off the machine. If I don’t turn it off, it just pumps the food stuff all over my bed or the floor, which makes a total mess. When it’s the middle of the night and I’m all sleepy, I do forget to turn it off sometimes.

This is my normal. I live like this every single day. I get no time-outs from it. I never get to wake up without the food tube or without my Trach. I never go into the bathroom and look in the mirror and see my mouth and cheeks and eyes and ears all the right sizes and in the right places. No matter how hard I ask and no matter how many times I wish for it on my birthday.

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