Death After Diagnosis

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Honestly I don’t know why I am doing this blog, I don’t know when the idea popped into my head that this is what I was going to do. Maybe I am doing this as a place just for me to be real, and maybe I am doing this as a place other Mothers, parents, or whoever can come and read and say wow I felt that way too, I’m not alone it’s ok that I felt/feel that way. In the end maybe this blog will serve the purpose of both! I’m not going to go into detail about my son, I write a journal of his daily life and those of you interested in reading it can visit and walk daily with him at http://www.caringbridge.org/visit/andrefloydjr This is about life, the journey of our life through my eyes. The way I perceive it and feel about it with no holds bar! To start you have to journey back with me to May of 2011:

I remember taking my son (who loves to be called P’nut, from here on out in all my posts that is what I will use) to the hospital for monitoring…I remember that I do. That day he was hooked up to so many things, so many, but their was one that got me the most! I remember it because a special tech had to come in for it. She measured his head study it and made markings on it, and she started putting glue here and there and began intricately putting wires on his head,making sure they went exactly where needed…once done she took out this gauze and began wrapping his head to keep the wires in place!

Over those next hours I can remember people in and out of his room, test here, test there.
A test that he had to breathe quickly, a test with flashing lights, there were so many I can’t remember them all. I do know I was feeling so much, I didn’t know what to do,I refused to leave the room, to leave his side… No bathroom, no showering, no going to get food, no sleeping. I was afraid to do anything but sit there because I didn’t know what to expect, and the fact that the staff weren’t telling me was causing me every emotion possible.

A few days later I was called into the hallway… I remember the hallway the doctor put this film up on the board and started showing me a brain explaining about the details etc. I do remember he then pulled out another film this one was P’nut’s … His brain nothing like the first, nothing like it, I took in his words as he pointed and explained…I have never gulped so much in my life, I honestly felt as if it was a mistake! My son with those beautiful eyes and happiest smile, there was nothing wrong. As the doctor talked, I turned and looked in my son’s room and our eyes locked…I heard my name called…

I turned back around and the doctor then looked at me and said Mrs. Floyd, Andre’ Jr. Has Epilepsy! I could feel a crush in my chest my heart was racing so fast! I know most of the time people say excuse me and ask the person to repeat themselves, I didn’t need it repeated I heard him loud and clear and those words were resounding through my whole being. I couldn’t handle it I tried, I did try but I broke down and cried! My thoughts were fast and scattered, I had to call my husband, but how was I going to tell him this? You know honestly I thought to myself what and how is he going to react? I don’t need to tell him, but I made the dreaded call. I heard his voice and I broke down explained to him what was going on and he was headed to the hospital. I sat back in the room with P’nut…I looked at my baby and life passed through my mind, from the moment I found out I was pregnant, to me holding him to just life with him period! He was my precious gift and where were we suppose to go from here? I looked over at him, he smiled but in his face and smile I could tell he knew and he didn’t look the same! At that moment the sadness crushed me, I was holding onto life!

Soon my husband was there with our other kids. He came into the door and went straight to our son embraced him and came to me and hugged me…I remember him saying “Thank you for being so strong and taking care of him, we’re going to be ok!” After this it is blurry, a day later he was discharged. We brought him home! I was glad he was home in the comfort of his own room, but at the same time I was afraid I couldn’t take care of him! I didn’t know this, this wasn’t a part of life for me…I was fearful about giving him meds, I was anxious about him having seizures.

Over those next days P’nut’s seizures still came, he was tired alot, he was trying to adjust to his meds, he was adjusting to his limitations,and trying to understand why after days in the hospital he comes home to not be normal as he knew it but uncharted very limited territory. In those days I was adjusting, trying to understand, trying to educate myself and trying to incorporate this newness into our lives. Somewhere in there I , I didn’t know what life was anymore.

I do remember a night where I just cried and cried, and the feeling of being so alone and empty, and feeling useless to my son, useless to my husband and useless to our kids. I couldn’t protect my son from this and it hurt I had nowhere to run.Not long before we were living, laughing, smiling and carefree! But you know there was something that happened in that hallway, those words, they slowly did something… a diagnosis it takes your life away, it changes your life and before I knew it that diagnosis wasn’t just a diagnosis it had become my death…..