chiari angel

chiari angel

Monday, December 23, 2013

Dear Ryan

My dear precious boy,You are loved and missed so much. Not one moment goes by that I am not thinking of you. Just as when you were here with me. The morning you left us I was by your side holding your hand. Your sister was there too. Did you hear our voices speaking to you? I could tell your pain had left you and you were in a peaceful place. When you asked me the night before if I would be okay I couldn't understand why you asked that question. Did you know you were slipping away from me? I am trying to be okay and I promise you I will keep fighting for you and for your story to be told.Ryan,you were an amazing young man and I am proud to call you my son. Hailey is getting so big. Yesterday she was sitting on my lap looking at pictures on my phone. When we came to your picture she looked at it and pointed. I said 'that's Uncle Ryan' and she smiled so big!Hunter and Grayson miss you too. Hunter is wearing your favorite shirt! It's a little big on him but he wears it constantly and I believe it gives him comfort. Please watch over us from where you are and wait for me. We will be together again someday soon. All my love ,Mom

Thursday, December 12, 2013

Cause of Death

Mrs. McGee... I'm afraid your son is brain dead... His herniated brain stem collapsed and crushed his spinal column...My body went numb and I wanted to puke. I felt my legs start to buckle..the room was spinning. Somewhere in the distance I heard my daughter scream but she was standing right beside me. I wanted to scream myself but the only thing that would come out of my mouth was NO God NO! I know what 'brain dead' means and I didn't believe it. Just 20 minutes earlier he asked me for the urinal and upon using it he vomited and had a seizure.He made a deep guttural sound and he was gone.That sound I will never forget and keeps me awake at night. Now he was laying here lifeless his head hanging to the side as if his neck were broken. His eyes were open but with a fixed glare. I begged him to speak to move...squeeze my hand... anything. No one told me Chiari could cause brain death. What happened? This is not supposed to happen,I was told something like this never happens! I shook my fists in the air..Please God take me,take me! Not my son! I cried out to my son.. Oh Ryan..mama is so sorry!.. my beautiful brave boy! If only they had listened to us...they saw him getting worse...I begged for help! Why would no one listen? My dear son was not mentally ill. His brain stem was pressing on his spinal cord. My son should not have died. I remember the frightened look on his face when just one week before he was pronounced brain dead the doctor came in his room and announced 'chiari is no big just need to toughen up'. I hope those words he spouted to my dying son haunt him for the rest of his life!When are they going to listen? many more are going to die before the doctors that are supposed to care for us wise up? Cause of death..ignorance..lack of concern for my precious son.

Friday, December 6, 2013

Mothers Day will never be something I will look forward to again. It will hold a different meaning for me now. Ryan was diagnosed with chiari on that day. What started out as a normal day ended with a 3 month long battle of pain and suffering. Chiari came like a thief in the night and stole my precious happiness. This disease over the course of 12 weeks ravaged his body...his brain as he often told me 'had turned to mush'. As if that wasn't enough it stole his ability to walk and hold his head up.... swallow,or keep anything in his stomach including water. I sat day after day by his side and watched my son die a slow death. And to add insult to injury it inflicted on him the most excruciating pain you could ever imagine. I hate this thing called chiari! I despise it because it sucked the life out of my child. It hit him so fast and gave us no time to prepare for the worst possible outcome. I will forever dread Mother's Day. On the way to the hospital that day Ryan said ' Mom I'm sorry I ruined Mother's Day'.... Ryan you didn't ruin Mother's Day!....Chiari Malformation did. Ryan was the sweetest most kind hearted young man to have walked this earth. He didn't have to die! MORE DOCTORS NEED TO BE AWARE CHIARI CAN AND DOES KILL!