chiari angel

chiari angel

Monday, June 3, 2013

My son Ryan..

My son has been ill. Mother's Day he woke up with a major headache...the worst headache of his life. My healthy strong 19 year old son who was never sick a day in his young life. Two weeks prior he had headaches off and on. I thought it was an allergy or migraine,after all his sister suffers with them once in a while. I told him he needed to get more sleep,eat better. But here he was...laying on the bathroom terrible pain,throwing up,barely able to stand. Then he said his neck hurt. My first thought was meningitis as his sister looked it up on the computer. He seemed to have a lot of the symptoms. I knew this was serious. My husband and I rushed him into the car and headed to the ER. He could hardly stand the ride there and cried in pain at every bump in the road. When we reached the ER he totally collapsed at the door. The next thing I remember they were rushing him back to a very tiny room and putting an IV in his arm. After many questions from the doctor he said "Probably a severe migraine but I want to do a CT scan to make sure". After the scan the doctor came into the room and this time he was not smiling..he closed the door behind him and sat down. We see a "mass" on Ryan's brain,it's rather large..but we can't tell what type of "mass' until we do an MRI. All I heard was "large mass". Oh my God,I thought how could this be? It was 3 am and they were whisking him away for an MRI and the neurosurgery team was notified. They told me...20 minutes and we will know. The longest 20 minutes of my life. I could not understand why this was happening could not be this cruel..this was my baby! Finally..the doctors came in and gave us the news. It was not a tumor but a Chiari malformation. Chiari malformation is an abnormality in the lower part of the brain... the cerebellum. the part of the brain that controls coordination and muscle movement. My son's brain was being squeezed and pushed into his spinal column.He also had hydrocephalus..water on the brain.

My son was placed in ICU and for three and half weeks he was so sick..he had two major brain surgeries and stopped breathing after the first one and was placed on a ventilator. My daughter wrote a post on facebook..
.I'm sitting here watching my baby brother breathe by way of breathing tube, completely sedated, head shaved, arms restrained, tubes covering his frail body. Why, why, why is he having to go through this? I don't want to hear that this is somehow "god's" plan. I don't want the doctors to tell me that they're just not sure why his body is reacting this way. I want my baby brother back. I want to drive down the road and punch him because I saw a punch buggy and have him laugh at my girlie hit. I want to stay up late together watching the dorky science documentaries that only he and I appreciate. I want him to give me one of his big hugs and say, "I love you sissy.". Maybe I'm weak, but I just can't stand seeing him like this.
I understood's so hard seeing someone you love suffer. As a mom I wished I could just make the pain stop for both my children.

One night sitting by his hospital bed....Ryan wrote me a note...I treasure it...

I just wanna say that I don't know if I could've got through this whole thing without my mom here supporting me. Shes exhausted but doesn't want to leave in case something happens and I appreciate that more than anything. This whole thing has been the toughest but but also the most eye opening experience of my life and shes here with me every step of the way. Thank you  Mom  I love you more than anything in this world.

I can't tell you how much that meant to me. My son had grown into a man, he had pulled through something so terrifying and did it with such grace and dignity. He looked at me and said...." I know mom what does not kill us makes us stronger, that's what you always told me"

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