To anyone but my friends, for whom this blog was intended, please go elsewhere. I never knew everyone all over the globe would be tearing this blog apart. This is just our story - it is not more important than anyone else's story, it is the only one I have to tell. And I think Julia wants me to tell it. (Stolen, yes, from a friend - you know who you are).
Thank you to my friends....... and to those who judge me and what I have written - why don't you stop wasting your time....do yourself a favor and don't read it..... I am busy trying to heal my daughter and support my family.
Thanks
Julia's Mommy.
Tuesday, May 24, 2011
Wednesday, May 4, 2011
I was asked by an autism researcher to write a narrative from Julia's perspective...
Hello, my name is Julia. I am unable to speak, but my mom has got me pretty well figured out, so she is going to tell you all the story of my life from what she believes is my perspective of my life with a significant disability. I have a severe brain injury.
I was born a normal, happy, healthy baby on December 28, 2005. What a wonderful Christmas gift I was to my family - my mom, Susan, my dad, Mark, and my big brother (well, he was 2 1/2 years old), Jack. I was big and beautiful and full of personality. Everyone that met me LOVED me! I was blessed with just over a year of what most would call a "normal life".
On December 26th, 2006, my mom scheduled me for my one year wellness exam with my pediatrician. I didn't like to go to the doctor, because it seemed I always got shots when I went there, but mommy tried to explain to me that it was for my own good and though they hurt, they would keep me healthy. That day in December, I got two shots which contained a combination of 5 different live viruses poked into my left shoulder. It really hurt, but I was a trooper, because, as mommy said, the shots would keep me safe and healthy. Mommy was wrong.
On January 4th 2007, I was sent home from daycare because I had a really bad headache and a pretty high fever. My dad picked me up from daycare because my mom was working until 8pm that night. My dad fed me, bathed me, and put me to bed early - assuming I had a bad cold or something. Dad was wrong, too. Mommy never saw me "normal" again because I was in bed when she got home from work.
On January 5th, 2007, at 7am, my dad found me in my crib unconscious, in a full blown seizure, covered in poop and vomit. My mom and dad thought I was very close to dying. Long story short, I flew in a helicopter to a hospital and I spent a month in PICU. I was on a ventilator, had feeding tubes, catheters, etc. They did lots and lots of tests on me. I am glad I was unconscious for most of the tests, because mommy said they probably hurt. The doctors weren't sure what had happened, but mommy knew - she is smart - she is an animal doctor and had seen similar things happen in animals after vaccines. Mommy pursued her thoughts on why I got so sick, and she eventually won in court for damages done to me by the MMR vaccine. Thank you, mommy.
So, about my life since January 5th, 2007. When I left the hospital, I was so confused. I couldn't walk anymore. The left side of my body didn't work. I couldn't roll over or even sit up anymore. I couldn't sleep at night because I was uncomfortable and couldn't move my body to get comfortable. Before my injury, I LOVED to eat EVERYTHING, but now my food had to be modified or it would go into my lungs when I swallowed. I had to take all kinds of yucky medicine to keep my brain from having seizures. I had so many more doctor appointments than I had ever had before! My mommy and daddy cried a lot. My mommy and daddy screamed at each other a lot. I cried a lot because my voice wouldn't make words anymore - the only noise I could make was screaming and crying. I didn't get to go back to daycare to see my friends anymore because of my disabilities and fragilities. People stopped coming to our house because they didn't know what to think of me and they didn't know how to help my mommy and daddy.
As the years went by, I did get somewhat better. I started to be able to sit up. Two years after the injury, I started walking again - not normally, and I can't run, but I became MOBILE again! Praise God! I regained my ability to swallow and went back to eating like a horse! My mommy and daddy decided not to live together anymore because of all the screaming that they did to each other. I miss my daddy - he moved far away, but I get to see him sometimes. I have a "bonus" dad now, too, named Shawn. Mommy calls him my step-dad. I really love him a lot - he and I have really connected in an amazing way.
There are still things I can't do. My ABA therapist told mommy and Shawn that I have no concept of "play". I don't play with toys like most other five year old's do. I don't really have any friends because people don't understand me and why I do the things I do. They think I am weird. I still don't understand that whole "potty" thing and I wear diapers - people think that is weird, too, since I am 5 1/2 years old. I still can't talk - but I am working on some very good noises and I am trying so hard! I still scream and cry a lot because I get so frustrated not being able to tell people what I am thinking, or if something hurts, or if I am tired. When we go out to different places, sometimes adults and kids stare at me when I am screaming and they think I am a bad kid. I am not, I just can't tell anyone what is going on in my head. I have so much to say, but no way to really say it.
I have a hard time concentrating on any one task for more than a few seconds, so I am constantly on the go looking at different things and sometimes getting into things that can hurt me. When we go out, I will walk around and eat off of strangers' plates - I LOVE food, but people think I am a bad kid and my mom is a bad mom. They are wrong. Sometimes I wander away if nobody is watching me constantly....I just want to go on an adventure, but mommy always says something about how I could get hurt or lost - I don't understand what she means. Luckily, I have never gone too far, except that time the neighbor found me in the middle of the street and brought me home...mommy was helping my brother Jack with something upstairs, and I opened the front door and walked out. It was a nice day outside and I wanted to explore!
Mommy is still very sad about what happened to me. But, I don't blame my mommy for what happened. I am frustrated living in this body of mine that doesn't work the way I want it to, but, I do the best I can. I am happy most of the time. I am developing quite a personality, and have found ways to make my needs known to those who spend the most time with me. I am trying so hard to make some words, and I think someday my mouth will be able to do what I want it to do, so I can talk. I may never hold a conversation, but I really want to be able to let people know what I am thinking. I am very smart. I want to be able to control some of my behaviors so that I can make a friend or two or fifty! I also want to be able to control my behaviors so mommy isn't so sad and mad when people judge her because of what I do. I want my mommy to be happy, and I want her to know that I love her even though she thinks what happened to me was all her fault. I want mommy to forgive herself and love me for who I am now. I will get mommy there someday! And, I am going to surprise everyone with what I will do! Look out world, here I come!
Julia
I was born a normal, happy, healthy baby on December 28, 2005. What a wonderful Christmas gift I was to my family - my mom, Susan, my dad, Mark, and my big brother (well, he was 2 1/2 years old), Jack. I was big and beautiful and full of personality. Everyone that met me LOVED me! I was blessed with just over a year of what most would call a "normal life".
On December 26th, 2006, my mom scheduled me for my one year wellness exam with my pediatrician. I didn't like to go to the doctor, because it seemed I always got shots when I went there, but mommy tried to explain to me that it was for my own good and though they hurt, they would keep me healthy. That day in December, I got two shots which contained a combination of 5 different live viruses poked into my left shoulder. It really hurt, but I was a trooper, because, as mommy said, the shots would keep me safe and healthy. Mommy was wrong.
On January 4th 2007, I was sent home from daycare because I had a really bad headache and a pretty high fever. My dad picked me up from daycare because my mom was working until 8pm that night. My dad fed me, bathed me, and put me to bed early - assuming I had a bad cold or something. Dad was wrong, too. Mommy never saw me "normal" again because I was in bed when she got home from work.
On January 5th, 2007, at 7am, my dad found me in my crib unconscious, in a full blown seizure, covered in poop and vomit. My mom and dad thought I was very close to dying. Long story short, I flew in a helicopter to a hospital and I spent a month in PICU. I was on a ventilator, had feeding tubes, catheters, etc. They did lots and lots of tests on me. I am glad I was unconscious for most of the tests, because mommy said they probably hurt. The doctors weren't sure what had happened, but mommy knew - she is smart - she is an animal doctor and had seen similar things happen in animals after vaccines. Mommy pursued her thoughts on why I got so sick, and she eventually won in court for damages done to me by the MMR vaccine. Thank you, mommy.
So, about my life since January 5th, 2007. When I left the hospital, I was so confused. I couldn't walk anymore. The left side of my body didn't work. I couldn't roll over or even sit up anymore. I couldn't sleep at night because I was uncomfortable and couldn't move my body to get comfortable. Before my injury, I LOVED to eat EVERYTHING, but now my food had to be modified or it would go into my lungs when I swallowed. I had to take all kinds of yucky medicine to keep my brain from having seizures. I had so many more doctor appointments than I had ever had before! My mommy and daddy cried a lot. My mommy and daddy screamed at each other a lot. I cried a lot because my voice wouldn't make words anymore - the only noise I could make was screaming and crying. I didn't get to go back to daycare to see my friends anymore because of my disabilities and fragilities. People stopped coming to our house because they didn't know what to think of me and they didn't know how to help my mommy and daddy.
As the years went by, I did get somewhat better. I started to be able to sit up. Two years after the injury, I started walking again - not normally, and I can't run, but I became MOBILE again! Praise God! I regained my ability to swallow and went back to eating like a horse! My mommy and daddy decided not to live together anymore because of all the screaming that they did to each other. I miss my daddy - he moved far away, but I get to see him sometimes. I have a "bonus" dad now, too, named Shawn. Mommy calls him my step-dad. I really love him a lot - he and I have really connected in an amazing way.
There are still things I can't do. My ABA therapist told mommy and Shawn that I have no concept of "play". I don't play with toys like most other five year old's do. I don't really have any friends because people don't understand me and why I do the things I do. They think I am weird. I still don't understand that whole "potty" thing and I wear diapers - people think that is weird, too, since I am 5 1/2 years old. I still can't talk - but I am working on some very good noises and I am trying so hard! I still scream and cry a lot because I get so frustrated not being able to tell people what I am thinking, or if something hurts, or if I am tired. When we go out to different places, sometimes adults and kids stare at me when I am screaming and they think I am a bad kid. I am not, I just can't tell anyone what is going on in my head. I have so much to say, but no way to really say it.
I have a hard time concentrating on any one task for more than a few seconds, so I am constantly on the go looking at different things and sometimes getting into things that can hurt me. When we go out, I will walk around and eat off of strangers' plates - I LOVE food, but people think I am a bad kid and my mom is a bad mom. They are wrong. Sometimes I wander away if nobody is watching me constantly....I just want to go on an adventure, but mommy always says something about how I could get hurt or lost - I don't understand what she means. Luckily, I have never gone too far, except that time the neighbor found me in the middle of the street and brought me home...mommy was helping my brother Jack with something upstairs, and I opened the front door and walked out. It was a nice day outside and I wanted to explore!
Mommy is still very sad about what happened to me. But, I don't blame my mommy for what happened. I am frustrated living in this body of mine that doesn't work the way I want it to, but, I do the best I can. I am happy most of the time. I am developing quite a personality, and have found ways to make my needs known to those who spend the most time with me. I am trying so hard to make some words, and I think someday my mouth will be able to do what I want it to do, so I can talk. I may never hold a conversation, but I really want to be able to let people know what I am thinking. I am very smart. I want to be able to control some of my behaviors so that I can make a friend or two or fifty! I also want to be able to control my behaviors so mommy isn't so sad and mad when people judge her because of what I do. I want my mommy to be happy, and I want her to know that I love her even though she thinks what happened to me was all her fault. I want mommy to forgive herself and love me for who I am now. I will get mommy there someday! And, I am going to surprise everyone with what I will do! Look out world, here I come!
Julia
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