30 comments

Sad Inspirational

For Emma… (This story is dedicated to all 11Q children and everyone who has a disability.)    

I’m strong, smart, and beautiful, so why am I sitting here in my wheelchair staring out from a broken window?

Well, the answer to that question is a bit complex. You see when I get angry I can’t communicate that frustration, so I tend to throw and hit things. I can’t talk, at least not like you. I try to say things, believe me, but the only thing that comes out of my mouth are grunts and yells.

Today, I noticed Billy and Jennifer playing outside, and I so desperately wanted to play with them. They like to tease me and say hurtful things, so my parents try to keep me away from them.

Mommy, Daddy can I play with those kids? I try to say.

“Ugh… Ughhhh!!”

My Mommy smiles warmly, “We can go outside a little later, Sara.” 

I’m not sure how my parents understand me, but they do!

My Daddy walks over to me and fixes my loose hair that always tends to fall across my face. He pats my back and proclaims, “We will go outside when those other kids go home. You know how mean they can be.”  

I want to go out right now!

“Ahhhhhhh, Ugh! Ugh!”  

I get so mad I swing my arm as hard as I can… CRASH! 

Honestly, I didn’t know the window would break like that. My parents frantically grab my arm to check for any cuts. I can see the panic in their eyes, but they never get mad at me. They are so cool like that. I break a lot of things sometimes. Did you know that I broke three big screen TVs before? 

Well, I did…

You have to understand that kids like me don’t have very good motor function skills. Sometimes when I’m playing with my toys, I can’t figure out how to work them. My parents try to help me, but I just don’t understand. I get so mad that I don’t even want the toys near me anymore. It doesn’t matter what the toy is. I throw it very far away, so I won’t have to see it again.

As you probably guessed, those toys flew like Superman - up, up, and away. Before I knew it - BOOM! - the TV was broken.  

Don’t worry though, my Daddy fixed the problem by hanging the new TV high on the wall. 

I love going everywhere with my parents, it’s my most favorite thing in the world to do. When we go to the store everyone likes to stare at me because I’m different. Mommy tells me not to worry about the other people, and that I’m special. I like to wave at everyone, but sometimes people look at me with a hateful look in their eyes. My Daddy gets really mad at them. I think it’s super funny because he has the best facial expressions I’ve ever seen!  

I honestly can’t go outside very much because I’m allergic to everything. My Mommy is always worried, so she carries a special needle in case I have a reaction to something. We have these special air purifiers all over our house, so I can breathe better. Before I have my bath, I get to breathe in steam from my nebulizer that looks like a duck. It takes about twenty minutes and when I get bored, I snatch the clear rubber tubing away from my parents and make them work hard to get it back.  

I have a great big unbreakable mirror in my room that I like to stare at. I don’t know who that person is looking back at me, but I think I have a special friend. My room is awesome because it’s decorated in a beautiful Disney Princess theme. Jasmine from Aladdin is my favorite, she is so beautiful. My parents worked really hard on it, and it’s my safe place to have fun without breaking anything. Mommy calls it the safe room.

Did I mention that I have twelve different doctors that like to see me every three to six months? It’s the truth. 

When I have an appointment, it takes my Daddy three hours to drive me there. I like going to see the doctors because I get to see kids like me. Special kids. They have wheelchairs too, and it makes me feel happy. 

When can we see the Doctor?

“Ugh! Ugh! Ahhhh!”  

“They will call us when it’s our turn, Sara,” Mommy says. 

Mommy pulls out her iPad, so I can watch YouTube videos. I love the dancing ones, I can’t dance like them, but I try to move my arms to mimic them. “You’re a good dancer, Sara!” my Daddy says smiling. 

When I’m at home watching the iPad, sometimes I get mad because I can’t change it. I point and point, but it just doesn’t work. I watch Mommy do it, and it works all the time like magic. That’s ok because when I can’t get that thing to work, I throw the tablet across the room. I don’t have to worry about breaking it because Mommy put a rubber case on it.   

Sometimes I feel bad for my parents because they will have to take care of me for the rest of my life. They don’t seem to mind one bit about that, and I’m so thankful that they let me be me. I’ll never be able to get married, go to work, start a family of my own, or take care of myself. I’m not even sure if I’ll be able to walk one day. That makes me sad sometimes, but my parents tell me that those things are overrated. 

My parents have to wrestle with me just to brush my teeth and change my pull ups. I like to have fun and make them work for things. When I’m hungry, I will point to my mouth, so they know I’m hungry. Daddy likes to feed me, and he always reads to me before bed time.

My Mommy likes making me look pretty and she always flips out when I put one of my toys in my mouth. She seems to think I will choke on something, but I just like to chew on stuff. She takes care of important things like that and keeps a close eye on me. Someone has to watch me twenty-four hours a day, even when I’m sleeping to make sure I don’t have any seizures.

My name is Sara Evans. I’m ten years old, and I’m an Eleven Q kid. If you don’t know what that is, I’m afraid I can’t help you with that. Doctor Hummel told my parents all about it, and it sounds very complicated. As far as I know there are several Eleven Q kids out there, but we’re all different. Most kids fall into the Jacobsen syndrome category, but not me… 

I’ve had extensive genetic testing, and I don’t fall into that category. I’m afraid to say that what I have hasn’t been seen before. I’m the only one that has this very rare genetic disorder, and there is no documentation for what I have or how it will affect me.

I like how all the doctors keep telling my parents to hang in there. Just hang in there. I’m not sure what that means either; I don’t see any handle bars. 

I told you I was special... 

If you see a kid like me out and about somewhere, don’t be afraid to say hi. We know that some people might be afraid of us, but we are not afraid of you. 

That’s just a brief glimpse into my wonderful life. Don’t worry about the broken window because my Daddy always has a spare in the garage. Well, I have to go now, it’s time to play catch with my Mommy and Daddy. 

It was nice to meet you! 

The End

Daniel R. Hayes  

June 09, 2021 15:39

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30 comments

Mohamed Sarfan
05:46 Jun 16, 2021

Dear Writer, I can feel the empathy within the story as I read a life book through the window. The Lord secretly hides every human being under the control of individuality and throws them to swim like fish in the sea of life. Like some fish the man is going to break his legs. There are no words to describe the state of a heart that stores memories in the mind from a chair to the limit of life, from sunlight to moonlight; On the contrary, I can shed tears. Life punishes or loves giving each man a different storyline. Write more Congratulations

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Daniel R. Hayes
05:49 Jun 16, 2021

Thank you very much Mohamed. I really appreciate those kind and wonderful comments. Thank you for taking the time to read this story, I'm so glad you liked it :)

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Cole Lane
03:03 Jun 12, 2021

Wow, I'm not sure what to say, dude. I mean the POV was intense, there is so much here. Sara has so much to overcome, her parents as well. My son is on the autism spectrum, through a lot of hard work he is high functioning so not even a 10th of the difficulty that Sara and her parents are going through, but I understand the drive to give your child every possibility for success. This was a giant writing task to pull off. I don't know how you do it. Kudos all around!!

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Daniel R. Hayes
05:31 Jun 12, 2021

Thank you Cole!! So you found a story where no one got murdered... lol :) Honestly though, thank you for those wonderful comments. This was a hard one for me to write, that's why it was so short. I wrote it in 30 minutes. I completely understand what you said about your son! This story is dedicated to you and your son and everyone who has a disability. Through my daughter I have met and shared a lot of heartbreaking stories with other people, and I felt like I needed to write this :) Thank you so much :) :)

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Beth Connor
16:14 Jun 11, 2021

This is so different thank your other work, but poignant and beautiful. I love how you told it from Sara's perspective, and although it was labeled sad, she has such a beautiful and happy perspective. When I was growing up, we had a friend in our neighborhood that Sara reminds me of. I don't remember her disability name, but it could have been similar- she couldn't speak (except some grunting) but boy she made it clear when she was angry (or happy- she loved to laugh) I think your story reminds us to look at each person as a person. Sar...

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Daniel R. Hayes
16:24 Jun 11, 2021

Hi Beth, Thank you so much for these wonderful comments. I wanted to shine a light on this topic and I think most people tend to shy away from it. I wrote a story about child abuse a while back that had the same kind of emotion. To be honest what I wrote here doesn't even scratch the surface. Sensitive topics for sure, but I thought I would write them :) Plus, I didn't kill anyone in this story... lol :) Thanks a million!!! Made my day :)

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Gemma McDonald
15:15 Jul 10, 2021

This was so bittersweet, and gave me new sight on non-verbal people. This was very cute and sweet, and I had never heard of 11Q before! But I do now. Wonderful story.

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Daniel R. Hayes
16:31 Jul 10, 2021

Thank you Gemma!! I wanted to bring some awareness to this topic because I think it gets overlooked a good bit. I told it from the girls POV so that people would have an idea of what they go through. Thanks so much for reading this one!

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Michael Hayes
10:29 Jun 23, 2021

A very good insight to disability. I dont think there enough stories or films featuring disability; which is sad because if they were more films people would probably understand better.

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Daniel R. Hayes
17:45 Jun 23, 2021

Hi Michael, thank you so much for reading this. Yeah, this story was something I wanted to put out there for awareness. I agree that there are not enough stories or movies about this topic. Thanks for the wonderful comments. Oh, were not related are we?? lol :)

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Charlie Murphy
01:39 Jun 17, 2021

Fantastic job! I relate to Sara! I have Cerebral Palsy and can't talk as well! I'm more physically limited than her, but not at all mentally!

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Daniel R. Hayes
05:25 Jun 17, 2021

Thank you so much Charlie, I dedicate this story to you and anyone who has a disability. I really appreciate those wonderful comments :)

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Ruth Porritt
08:31 Jun 12, 2021

I just had another thought: I can't wait to read the rest of your work. Have a great weekend, Ruth Porritt

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Daniel R. Hayes
13:47 Jun 12, 2021

Hi Ruth, thanks for all the likes, and I look forward to reading more of your work too ;) Hope you have a good weekend :)

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Ruth Porritt
09:23 Jun 13, 2021

Hello Daniel, Sure, it is really my pleasure. :) Have a great one and catch you later, Ruth

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Ruth Porritt
08:29 Jun 12, 2021

I had almost the same reaction to this story as Cole Lane. (Wow! Also, this story is able to educate anyone who reads it, instantly. Thank you for writing it.) I am a teacher, and I love that you took the time to write exactly what it might be like for a child who has been labeled as "different" by people who haven't taken the time to see the world from the child's point of view. I also love that you described the different kinds of love that her parents have for her, and last, but not least, I am so very glad that you have taken the time ...

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Daniel R. Hayes
13:44 Jun 12, 2021

Thank you so much Ruth! I really appreciate these wonderful comments. I've been very fortunate to have met a lot of kids like this, and talk with their parents. I felt like this was a story I had to write. Because of the sensitive nature of this subject, I almost didn't post it, and I didn't think anyone would read it, so thank you so much for those kind words. That made my day :) :)

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Ruth Porritt
09:30 Jun 13, 2021

Hello Daniel, Again, I am so glad that you took the time to write down this story. Isn't it an interesting phenomena? I find that the stories I am reluctant to post are precisely the stories that matter, and the ones that have real meaning. Genuinely, you made my day by posting a piece that helped me to see life from a different perspective. Have a great Saturday/Sunday, and catch you later, Ruth

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Daniel R. Hayes
15:20 Jun 13, 2021

Thank you so much Ruth!! I'm so glad to hear that my story helped you see a different perspective. Hearing that makes my day, and reassures my thoughts about posting this story :) Have a great weekend!!

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Blue Green
19:38 Jun 11, 2021

This is great writing, you've handled a difficult subject with sensitivity, and created a very moving story. Well done!

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Daniel R. Hayes
22:15 Jun 11, 2021

Thank you so much B.G. This one was hard to write because of the subject matter, but I feel really good about it :) I always appreciate your feedback!!

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TJ Squared
01:23 Jun 11, 2021

wow, I liked this one. It hit pretty close to home with my brother, he's special too. You're right, it's a pretty touchy topic, but you wrote it well nonetheless. Great job portraying her emotions and frustration. It's so hard to understand how they see the world from a wheelchair.

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Daniel R. Hayes
02:05 Jun 11, 2021

Hi, thank you so much!! I really appreciate your kind words. This was not an easy story for me to write. I know it might be a touchy subject for some, but I really thought it was an important topic. I tried my best to capture what it would be like for a child to have this, and what the parents go through. Honestly, what I wrote doesn't even scratch the surface of what these kids or their parents have to go through. Thanks again, it really means a lot to me :) :)

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TJ Squared
03:29 Jun 11, 2021

yeah, you did well! very true. you're very welcome :)

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KED KED
15:25 Jun 10, 2021

Hey Daniel, I liked how gently you navigated this topic. It's a sensitive piece for sure...interpreting something as delicate as this. You hope for parents like these, but I imagine living this life would be fraught with miscommunication and frustration. It was nice to meet you too, Sara :)

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Daniel R. Hayes
15:47 Jun 10, 2021

Hi Kelly, Thank you so much for those wonderful comments. I had to do some research on 11Q although I have met some kids that have this, and I know the topic well. It would be a hard life for anyone to go through, and I think it speaks volumes of how strong love can be between parents and kids :) I think it's an important topic and one that many people turn a blind eye to. These people feel like they have to hide because of the constant torment that other people put them through. So, I thought I would write this story to show that they don...

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13:37 Jun 10, 2021

I believe this was perfect. In many ways more than one. I can only admire how you expertly gave the reader a glimpse in the life of an 11Q child. Emma is a lucky girl to be surrounded by so much love. Somehow, I think this story is deeper. Somehow I think it's about understanding people's differences. Somehow I think it's about the power of a smile and the determination of a parent's love. Somehow I believe that this story was more optimistic than sad. I know it can be frustrating when the child makes you work for things, but I believe all ...

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Daniel R. Hayes
15:34 Jun 10, 2021

Hi Ruthy, thank you so much for those amazing comments! For this story I had to do a lot of research on the topic. I've met a lot of kids that have problems like this, and I can honestly say that they are very unique and special people. In fact they are some of the strongest people I've ever met along with their parents! Thank you so much for your wonderful words as always :) :)

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19:27 Jun 10, 2021

Daniel, you really don't have to thank me. You don't have to respond. Aforementioned before, I enjoy reading your stories. Have a great day/night! Sincerely, Ruthy_May

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Daniel R. Hayes
16:37 Jun 09, 2021

Author's Note: Hi guys, constant readers will know that this story is very different from my other works. It's about 11Q kids and it's so rare that if you try searching for it you won't find much info about it. Here is a brief description about it: Chromosome 11q deletion is a chromosome abnormality that occurs when there is a missing (deleted) copy of genetic material on the long arm (q) of chromosome 11. The severity of the condition and the signs and symptoms depend on the size and location of the deletion and which genes are invol...

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