chiari angel

chiari angel

Wednesday, September 24, 2014

There I was lying in a hospital bed about to go into surgery to receive Ryan's kidney. Looking back I have no idea how I made it through . The previous weeks had taken its toll on my body and remaining kidney function... I was very sick. My mind was not functioning well because of the toxins in my blood and I believe  I too was close to death. I was so tired..I wanted to go to sleep and not wake up. My son was saving my life..but I couldn't save his. I felt if I didn't make it through surgery that would be okay because I would be with him..I wasn't afraid..I was at peace. My nurse came into my room and announced he would be prepping me for the surgery. He left the room briefly and then came back in and took my hand. My dear...he said...I am so very sorry for the loss of your son. I began to cry. Someone must have told him the kidney was coming from my deceased son and now he knew the story and the reason why I was not overjoyed... as most people are.. when receiving a new kidney after being sick for so long. He looked me straight in the eye and said...I know another Cherokee when I see one. I told him.. yes I am Cherokee. He said ..I knew that..because the Elders are here and they are surrounding your bed..they are here to look over you..I recognize you as my Cherokee sister. I can't help but feel that my mother and g-grandma Cinda was there among the Elders and had summoned them. At that moment I felt them too. As I was being wheeled into surgery I remembered the many times I had thought about this moment of receiving the gift of life. It was supposed to be a happy time with both my children and husband by my side. I had hoped and prayed for a living donor. I could not bear to think about someones pain of losing a loved one so I could live. Now here I was experiencing both sides of the organ donor process. I can say with great certainty that it is comforting to know Ryan saved so many lives. I feel he really does live on in a sense. I saw my doctor of many years enter the operating room. With his surgical mask on standing by my side I remember his eyes looked as though they were filled with tears. Well this is it..he said...I promise I will take good care of you.  And then I went into a deep much needed sleep as my sons kidney gave me new life. To be continued...

This is Ryan's last video . He was desperately trying to explain what was happening to his body as Chiari Malformation was deteriorating his brain. We knew very little about Chiari at that point nor was it explained to us by his doctors. We couldn't make sense of the disease that came on so swiftly in someone so young and healthy as Ryan. We blindly trusted that his doctors where doing the right things.  In his own words he talks about his fear, his pain and the emotional toil it took on him. Within days after this video was published Ryan had his first seizure. Everything went downhill,his health declined rapidly and my son died from severe brain stem compression  on August 11th ,2013. Just weeks after having decompression surgery. Why do I share our story you may ask? Because it is extremely important to get the right care and the right diagnosis with Chiari. It is important to know Chiari can be deadly in the hands of an unskilled or uncaring health professional. We need research and awareness. My son did not have to die. There was plenty of time to save his life if only the Doctors had listened to us and took his symptoms seriously. As Ryan so eloquently stated in this video..'This has made me a stronger person but it also has scarred me in a way'. Chiarians should not have to fight to be heard. The pain is real,life altering and adults and children are dying from a disease that gets very little attention. I will continue to fight for my son for the rest of my life. He deserves to have his voice be heard and his truth be told.

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