Growing up

I don't really know where to start, but it has to be somewhere. My life has been alot different than the "average" person. I was born in 1980 to two loving parents. Three years later my brother was born, premature, and something was wrong with him. Back then we didn't have all of the technology we have today, so they didn't know what was wrong right away. My brother was taken from my parents and rushed by ambulance to another hospital 40 minutes away. He was born with spinabifida. His spine decided to split off and continue to grow outside of his body. Because of that he pretty much has no feeling from the waste down, and is in a wheelchair. Growing up there were lots  of hospital visits, and stays, and traveling, and body casts. From the moment I can remember, my brother was "normal" to me. So what he's in a wheelchair, he's still my brother right?

Growing up was difficult. My parents got divorced when I was about 8 (1989) and that's when the struggle began. We stayed with my Mom while my Dad moved out and moved in with another woman. It was the hardest thing i've ever been through, a little girl losing her Daddy. My Dad was always in my life and I saw him every weekend and he always paid his child support. We were lucky in that aspect. My Mom was thrown into a single Mom roll all of a sudden and it was hard. I'd say we were poor growing up, welfare and all.

My Mom always made sure we had what we needed, not always what we wanted. I was fed and clothed and had a roof over my head. While all of this was going on, she decided to go back to college. Not being able to afford a babysitter that much, when I was old enough, it was my job to watch my brother. Needless to say that really cut into my childhood and experiencing things many others did. No sleepovers, no parties, my brother was #1. As we grew up more, I felt like I was more of a mother to my brother. My Mom lost her Mom at 11 so she isn't a very affectionate person. It was hard not having the emotional loving from my Mom, but thank god for my Dad because he is the opposite. I missed out on alot of things.I started to rebel.

When I was 18, I ran away from home and drank alot and smoked pot. I felt like I needed to act out to get attention. My Mom was very hard on me but I think my Dad understood and did what he had to do to make me see what I was doing wrong. I got it, I was being an asshole.I moved in with my Dad for about a year but came back home.

I'm very close to my brother, closer than most brothers and sisters. I felt like I had a hand in raising him, and still do to this day. Sometimes I feel like his mother. About 4 years ago he started to get really bad headaches and was throwing up alot. We first thought it was maybe migraines and tried everything we could to help. One day he didn't look too well, so I decided maybe it's time for an ER trip. My Dad ended up bringing him because I wasn't feeling so well myself. He ended up having a bloodpressure of 225/180. If you know anything about blood pressure that is way too high. He was rushed into the hospital and  given everything they could think of to bring the pressure down. They gave him Nitrious which brought it down too fast and caused a seisure. My Mom said it was the worst thing shes ever seen. They decided they didnt have at the hospital what they needed to deal with this. They put him in an ambulance and drove 25 minutes to UMASS. While all of this was going on, I was crying and freaking out because I don't know what I would do if we lost my brother, we came very close. They put him in the ICU because they weren't sure what was wrong. He was put on morphine and didn't sleep for 3 days.

At first they thought it was the shunt in his head, a tube to drain excess fluid. They were minutes away from doing brain surgery on him when a doctor stopped. It wasn't the shunt. His kidneys were failing and his bladder was pretty much closed. He has no feeling below the waist, so he had no idea. Had a bad bladder infection and needed to get the urine out.They ended up putting a tube in his bladder through his stomach. He was in the hospital for a little over a weektrying to figure out  what was exactly wrong. He had some of the top specialists in the country and together they figured out that his  bladder was full but was only pushing out the excess urine. Constant urine in the bladders and kidneys are not good. They ended up doing an operation that helped his bladder but one of his kidneys isnt working, and the other one isn't working very well. Right now he doesn't need dialysis cause he is so young, but one day he will and will also need a new kidney. If that day comes, and i'm able to, i'll give him one of mine. After that happened, I spend 2 years at home taking care of him. His home care, doctors, appointments, the day to day things he wanted. I put my life on hold for my brother, I wouldn't have had it any other way. Every little thing that goes wrong with my brother now freaks me out, because we almost lost him that first day in the hospital.

When I say theres one thing that freaks me out, it's when my brother isn't feeling well. It stresses me out my anxiety goes through the roof. I've been more of a mother than my mother has. Maybe thats why I don't feel the need to have children. I'll probably have to look after him for the rest of my life,but it's worth it, I love my brother to death. He's the strongest person I know and we could all learn alot from him.I'm sure i've left some things out, and will talk about them in another blog, but this is a quick look into a life that is different from so many out there.

xoxo,
Meg