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I am a miracle, or at least that's what they tell me...

thegaminghomethegaminghome Posts: 4Member Connected
edited September 2016 in Disabled people
I am a miracle, or at least that is what they tell me. But I see myself as just an ordinary kid with some problems.

My mom is helping me write this because she knows the facts, but the feelings and other stuff is from me.

My name is Aaron and I am 20 years old. I was born in November, 1995, but the thing is, I wasn't supposed to be born until March 1996. I was born 3 & 1/2 months early.

When my mom went to the hospital no one believed her that she was in labor, so they didn't try to stop it, but she was and just a short time after she arrived they had to rush her into the operating room and deliver me.
I was tiny, I only weighed 899 grams and was just about 12 inches long. My mom says my eyes were sealed shut like a kittens, and my skin was translucent.I didn't even have eye lashes yet.

The doctors told my mom and dad that I probably wouldn't survive, my chances were so small that they couldn't even give them a percentage. They didn't know that I was such a fighter.

I spent 3 months in the hospital and had a lot of problems. I had surgery on my heart, my eyes, my hernias, my esophagus, I had blood in my brain, and I couldn't breathe or eat on my own. I was hooked up to all kinds of machines that helped me breathe, and fed me, and made sure my heart was beating.
I was given a lot of medicine too.

But then one day I was well enough to go home. I was still on machines that kept track of my breathing, and I had oxygen, but I went home.

They told my mom and dad that I would not walk, or talk, or do much of anything, they said I would need a feeding tube for the rest of my life. I guess they just didn't know me too well, because they were wrong about me.

I spent the first seven years of my life in and out of the hospital, I had pnemonia all of the time, and I needed more surgeries. I had surgery on my legs and my esophagus again, but it was the pnemonias that were the problem.

There were so many times when they thought I would die, and that last time when I was 7yrs old they were telling my mom to make sure everyone came in to see me because I wasn't going to recover this time. But I did, another miracle they say. The biggest miracle is that after that pnemonia I never got it again, ever. No one knows why I stopped getting it.

Its kinda like the seizures I used to get. I had hundreds a day, my whole body would get slammed into the ground face first, I had concussions a lot and had to be on a lot of medicine to try to control them. They told my mom and dad that it was just the beginning and that as I got older I would have more types of seizures and have them more often.

But then one day I got a really high fever, and after that I never had another seizures again. They weaned me off of my medicines and I still never had another seizure. No one knows how it happened, but they were using that word again, miracle; it was another miracle.

Anyway, I was so sick for the first seven years that I didn't have a lot of time or energy to learn the things that other kids do. I didn't learn to talk til I was 5 years old, and I didn't walk without a walker til I was about 6 or 7 yrs old. And I was around three years old when I learned how to eat real food and not use a feeding tube.

After that things went pretty good for a while. I still got sick a lot and missed a lot of school, and had a lot of breathing treatments and medicine to take, but I was doing good.

The older I get the better my lungs are getting. I hardly ever get sick like that anymore, but when I do it really gets bad and I miss a lot of school because of it.

But now that I'm getting older and bigger my legs are getting worse and my back is getting worse. They had to do surgery on my legs again last year and I was in bed for a few months. It sucked because it was summer time and I missed my whole summer vacation.

I use a wheelchair a lot now and I have a special chair that takes me up the steps in my house.
When I walk I can't go very far and I'm really slow. I fall a lot and my legs get the shakes. I usually have to hold someone's hand, the wall, or furniture.

I have a special bed, its like a hospital bed and I have to have the head part up because my back hurts to bad if I don't. I have limited depth perception, no peripheral vision, reactive airways, aspergers, scoliosis, and cerebral palsy.

i am currently in job training.

I laugh a lot and make up jokes and try to make other people laugh too.

I decided to make a page on facebook to help raise awareness about kids like me.
People don't know enough about cerebral palsy, aspergers, and problems kids have from being born too early. And I want to help raise money for cerebral palsy charities.

Sometimes it is really hard because people don't understand why I'm slow and stuff and I get tired of the questions like why I can't do something. So I think this page will help people understand.

I hope a lot of people ask the questions here so I can answer them and then everyone will know the answers and I hope people share this page and like it so everyone can learn about this. https://www.facebook.com/aaronslifejourney/ http://www.spreaker.com/show/aarons-journey_2

Replies

  • humand12humand12 Posts: 6Member Listener

    Thank you for writing your story Aaron, and wonderful video. May the sun always shine on you to inspire others in need of hope.

  • galvin66galvin66 Posts: 18Member
    Oh Aaron, I'm so glad you have found the key to getting thru the day....... Laughter....... I have been disabled for a long time 44 years actually..... But everyone who meets me sees my smile first....... Then when I say I'm 50 they don't believe me, most think I'm still 40 ...... Well, you know I look around for their white stick (joke)........ I think this is me from a you its age (i think I was around 16 years of age, when I thought to myself (Catherine, for goodness sake stop the crying, isolating myself, so quiet, everyone thought I was shy........ NO I JUST DIDNT KNOW HOW TO HANDLE MY PAIN???!!!?...... Until I moved with my parents to Scotland, new town, new school, new friends.  I remembered the night before I started my new school, and I was so so nervous and so scared of having to fac the barrage of questions re my disability..... I started that night to write a diary and at the top of the next day I drew a smiling face at the top and from that day forward, I have started each new day with a smile, and like you have had just a few ops, major and small alike..... But still I smiled each morning........ WHY? Some may ask but all that pain, my answer prefer to be happy in pain than sad, lonely, always depressed (and yes I do get depression, but I try to nip it in the butt quickly (yes therapy) and IN MORE PAIN......

    Aaron, any time you want a chat, I would be honoured, even if you have a joke to share, he hey....... Mr Aaron, the miracle man (your mums right)
  • Chris_ScopeChris_Scope Posts: 695Member Pioneering
    Welcome to the community Aaron, and thank you for sharing your story. 
  • thegaminghomethegaminghome Posts: 4Member Connected
    galvin66 said:
    Oh Aaron, I'm so glad you have found the key to getting thru the day....... Laughter....... I have been disabled for a long time 44 years actually..... But everyone who meets me sees my smile first....... Then when I say I'm 50 they don't believe me, most think I'm still 40 ...... Well, you know I look around for their white stick (joke)........ I think this is me from a you its age (i think I was around 16 years of age, when I thought to myself (Catherine, for goodness sake stop the crying, isolating myself, so quiet, everyone thought I was shy........ NO I JUST DIDNT KNOW HOW TO HANDLE MY PAIN???!!!?...... Until I moved with my parents to Scotland, new town, new school, new friends.  I remembered the night before I started my new school, and I was so so nervous and so scared of having to fac the barrage of questions re my disability..... I started that night to write a diary and at the top of the next day I drew a smiling face at the top and from that day forward, I have started each new day with a smile, and like you have had just a few ops, major and small alike..... But still I smiled each morning........ WHY? Some may ask but all that pain, my answer prefer to be happy in pain than sad, lonely, always depressed (and yes I do get depression, but I try to nip it in the butt quickly (yes therapy) and IN MORE PAIN......

    Aaron, any time you want a chat, I would be honoured, even if you have a joke to share, he hey....... Mr Aaron, the miracle man (your mums right)

  • thegaminghomethegaminghome Posts: 4Member Connected
    do anyone have any questions?
  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    Hey Aaron,

    Thank you for sharing your story! It's been a while since you posted it but I've just come across it and I really enjoyed reading it and learning more about you.

    Hope you're doing as well as possible at the moment!
  • thegaminghomethegaminghome Posts: 4Member Connected
    quick update for everyone i have been attending a radio school
  • GlostergullGlostergull Posts: 2Member Listener
    Hey, Guys. I've just enjoyed reading your story, Aaron. I have several disability issues as well and I found that writing comedy also helped. I have been described as a robotic joke machine by a professional comedian who is encouraging me to write more. Maybe I will start my own thread and keep you posted
  • NystagmiteNystagmite Posts: 609Member Pioneering
    Aaron - thanks for your sharing your story. I have a friend who was born at 27 weeks. His parents were told he'd have similar problems to you. He had meningitis as a baby and thankfully, unlike many, he had no lasting side effects.

    He's now 18 and has just gone off to university.

    I do have a relative who was born around 28 weeks. They were lucky he was born that late. He spent the first 2 years on oxygen. He still gets chest infections and has some problems with his heart too.
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