How I'm Defying Doctors' Expectations as a Person Who Was Born Prematurely


I am a miracle, or at least that is what they tell me. But I see myself as just an ordinary kid with some differences.

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 21 years old. I was born on November 27, 1995, but the thing is, I wasn’t supposed to be born until March 1996. I was born three and a half 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 kitten’s, and my skin was translucent. I didn’t even have eyelashes yet.

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

I spent three months in the hospital and had a lot of problems. I had surgery on my heart, my eyes, my hernias and 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, 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 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.

RESOURCES FROM NICU HELPING HANDS

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

There were so many times when they thought I would die, and that last time when I was 7 years 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.

It’s 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 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 seizure 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 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 years old. And I was around 3 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; it’s like a hospital bed and I have to have the head part up because my back hurts too badly if I don’t. I have limited depth perception, no peripheral vision, reactive airways, Asperger’s, scoliosis and cerebral palsy.

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

In August 2017 I graduated from my job training school. I started online classes at American Broadcasting School in July because I want to get into radio broadcasting. It’s week five and so far I like it, even though it is really hard sometimes.

I decided to make a page on Facebook to help raise awareness about guys like me.

People don’t know enough about cerebral palsy, Asperger’s, and other conditions kids and young adults 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 I get tired of the questions like why I can’t do something. So I think the page will help people understand. I hope a lot of people ask the questions so I can answer them. I hope people share this page and like it so everyone can learn about this.

Follow this journey on Aaron’s Facebook page.

We want to hear your story. Become a Mighty contributor here.

Photo by contributor.

 


Find this story helpful? Share it with someone you care about.


Related to Prematurity

The Reason I'm Sending My Son With Disabilities to Kindergarten Early

Three days from today, my oldest will turn 5. Six days later he will enter his elementary school, not as a preschooler, but as a kindergartner. I wish this transition was nothing but happiness and excitement for what will come. He is excited, but as we get closer to the start of school, my apprehension only [...]

5 Things I Would Do Differently as a NICU Mom

It’s been over three years since my twins were discharged from their six-week stay in the NICU. I’m no longer recovering from pregnancy and the subsequent surgery. My babies are no longer an hour away from my house. My feet no longer look like water balloons. I’ve had time to reflect on my experience. So, [...]

To the 4-Month-Old Still in the NICU

Four months old. You are 4 months old. I can’t believe it. It was just yesterday, I swear. Just yesterday you were still in my tummy. Just yesterday we found out you would have to be born so early. Just yesterday we were given your odds. Just yesterday we were hoping your grandma would make [...]

My NICU Experience With My Daughter, Quinn

While reflecting on Quinn’s first year of life, there are many emotions that come to mind: fear, sadness, joy. But most of all gratitude for the people who took care of her and made every smile, laugh, giggle, milestone and tear possible. It’s sometimes hard to think about Quinn’s first few months of life without [...]