Believe in your Kid
Hi,
Nemo here. I am posting by myself today because tremors is still receiving treatment, and it has not been as kind as we all would have hoped it would be.
This blog is an overview to my story. Doctors said that it was over before it even started, my mom was told that I was absolutely going to be stillborn. If you don't know what that means, it means that I would never see my first breath. Instead of trusting what the doctors had to say, my mom decided that no matter what I had she was going to deal with it, and even if I didn't live at least I would have a chance. Similarly, I have a healthy twin and terminating me would have most likely meant having to terminate her as well. This is no longer the case but when I was born it was. After my mom tried to have kids for 10 years there was no way she was about to give up.
Well clearly I did not die. When I was born there were 13 doctors in the room just in case I managed to breathe, well I did. I did not need to be put on a ventilator, doctors were shocked and happy. My prognosis then went from stillborn to will maybe live for the next 24 to 48 hours. Again, they were wrong. I spend three months in the neonatal ICU getting stronger. When I was sent home I was on oxygen, had a feeding tube, and nobody knew what I had. Instead of giving up my mom gave me medication everyday and played with me as though I had a future, as though what the doctors were saying about me being a lost cause was not true.
At six months old I had my first heart surgery. Doctors were sure I would not survive, but I did. Then the prognosis was that I would never see my first day of school and even if I did live I would never be able to walk, talk, play with other kids, or understand my own name. Well, in those years I began having upwards of ten appointments a week. I learned to walk, talk, and eat, all things that naturally come to most children.
When I started school the teachers much like the doctors did not believe in me. Because I was not very strong and could not articulate very well, they were sure that I was dumb. Instead of agreeing with the teachers my mom taught me how to type so that I could get my ideas across. At this point I still had ten appointments a week. At the end of Kindergarten I had my second heart surgery, more detail of that will be in a later post. Returning to school after that every teacher thought I was a freak, many still do. I was treated as though my heart problem was contagious. We just kept doing what we always do, proving to everybody that I was capable.
Everything was stable for a while, granted I still had a lot of appointments. until I was diagnosed with Ehlers Danlos at the age of 20. This came with a whole host of new problems that we are still trying to figure out. I have been in and out of the emergency room and trying to see specialists. Because I have so many rare conditions, more than listed here, most doctors don't know what to do with me but that doesn't meant that my family and I can't keep fighting to show the world what I can do. While I can fight for myself now, I know that I would have not made it to this point had my mom not fought for me when I was young.
For any parent having to fight for their kid, it can be hard with the world against you but you are and will always be their greatest advocate and know even if you child is unable to communicate what you are doing means the world to them and everybody else with a chronic illness or disability.
WE BELIEVE IN YOU!
Tremors, and Nemo
Nemo here. I am posting by myself today because tremors is still receiving treatment, and it has not been as kind as we all would have hoped it would be.
This blog is an overview to my story. Doctors said that it was over before it even started, my mom was told that I was absolutely going to be stillborn. If you don't know what that means, it means that I would never see my first breath. Instead of trusting what the doctors had to say, my mom decided that no matter what I had she was going to deal with it, and even if I didn't live at least I would have a chance. Similarly, I have a healthy twin and terminating me would have most likely meant having to terminate her as well. This is no longer the case but when I was born it was. After my mom tried to have kids for 10 years there was no way she was about to give up.
Well clearly I did not die. When I was born there were 13 doctors in the room just in case I managed to breathe, well I did. I did not need to be put on a ventilator, doctors were shocked and happy. My prognosis then went from stillborn to will maybe live for the next 24 to 48 hours. Again, they were wrong. I spend three months in the neonatal ICU getting stronger. When I was sent home I was on oxygen, had a feeding tube, and nobody knew what I had. Instead of giving up my mom gave me medication everyday and played with me as though I had a future, as though what the doctors were saying about me being a lost cause was not true.
At six months old I had my first heart surgery. Doctors were sure I would not survive, but I did. Then the prognosis was that I would never see my first day of school and even if I did live I would never be able to walk, talk, play with other kids, or understand my own name. Well, in those years I began having upwards of ten appointments a week. I learned to walk, talk, and eat, all things that naturally come to most children.
When I started school the teachers much like the doctors did not believe in me. Because I was not very strong and could not articulate very well, they were sure that I was dumb. Instead of agreeing with the teachers my mom taught me how to type so that I could get my ideas across. At this point I still had ten appointments a week. At the end of Kindergarten I had my second heart surgery, more detail of that will be in a later post. Returning to school after that every teacher thought I was a freak, many still do. I was treated as though my heart problem was contagious. We just kept doing what we always do, proving to everybody that I was capable.
Everything was stable for a while, granted I still had a lot of appointments. until I was diagnosed with Ehlers Danlos at the age of 20. This came with a whole host of new problems that we are still trying to figure out. I have been in and out of the emergency room and trying to see specialists. Because I have so many rare conditions, more than listed here, most doctors don't know what to do with me but that doesn't meant that my family and I can't keep fighting to show the world what I can do. While I can fight for myself now, I know that I would have not made it to this point had my mom not fought for me when I was young.
For any parent having to fight for their kid, it can be hard with the world against you but you are and will always be their greatest advocate and know even if you child is unable to communicate what you are doing means the world to them and everybody else with a chronic illness or disability.
WE BELIEVE IN YOU!
Tremors, and Nemo
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