chiari angel

chiari angel

Tuesday, August 30, 2016

Happier times with Kevin and baby Ryan.
A proud daddy.

    Suffering with severe PTSD is especially hard when dealing with a cancer diagnosis. I cannot stand the sound of sirens.  During those weeks of Ryan's illness and death I had to call 911 multiple times. So often that they got to know us.

   I remember the one call I had to make when I found my husband in a pool of his own blood in our garage. Barely hanging to life after he snapped mentally because doctors refused to help our son.  He was sleep deprived and both of us had just spent the night in the E.R. with Ryan. Falling asleep sitting straight up in a hard chair...they refused us any comfort. By early morning they came in to tell us that our son was fine and they would no longer treat him from a neurological standpoint and to seek psychological help for him instead.

     That same day I had Ryan admitted into another hospital after another neurosurgeon there and his primary care doctor recognized his deterioration . My daughter and I came home to check on Kevin after he didn't show up at the hospital or answer his phone.

    As soon as I opened the door to our townhome I knew something was terribly wrong. There were drops of blood in the foyer and to my left in the kitchen I could see the trail on the white tile. To my right the garage door was left open slightly. My daughter was coming in behind me and I pushed her out so she wouldn't see. She collapsed on our porch screaming Daddy! Why!! I opened the garage door and saw my husband face down ,blood everywhere. I cannot even begin to describe my feelings. Except that it felt surreal.  I literally felt like I was out of my body watching from somewhere else.

   The 911 call was a blur of me screaming into the phone and begging for help. My brother had arrived by that time and literally saved Kevins life by turning him over and stopping the bleeding until the ambulance arrived. Neighbors were standing outside shaking their heads and whispering.

   I pulled myself together and went back to Ryan's side. He never knew what happened to his Dad.  I did not want to add to Ryan's pain and knowing that his Dad tried to commit suicide would have hurt him so bad. I successfully kept it from him by telling him Dad was at work and would come by as soon as he could. Later never came ...Ryan died a few days later with me by his side. He suffered a seizure... just before he was to have surgery to repair what the first doctor did to him .

     I came across this poem and it resonates with everything I felt about my husbands suicide attempt.

  Poem   By  Alison Stormwolf

You Weren't There

You weren't there when you should have been
You weren't there
When I told everyone you would be!
My night in shining amour
Became rusty overnight
My 'soul mate' forgot he had another half!
Oh how I wish you had been there!
Through all the terrors and the pain
When life had lost all meaning
And my mind was in distress
And I wandered as a ghost
I always thought that you would be
'The One' to Sleigh the Dragon
To raise me from the fiery pit
And rock me back to health
Safe in your arms…..
You weren't there in the cold dawn
Warm arms wrapped around me;
The car I heard was not yours
As I staggered to the window
Eyes swollen from grief and loss
The voice I heard through sedation
In the hospital, was not yours
You were not arriving
To take me to lunch!
My longing's cruel trick
I would have walked on broken glass
Stared Medusa in the face
Starved and suffered just to know
You were alright, not left your side
From daybreak to dusk
Oh God! no matter how I view it
No matter how I try to analyze
Your sudden withdrawal from my loving world
The facts speak for themselves
You weren't there!
© Alison Stormwolf

Monday, August 1, 2016

The Cancer..

I don't even know where to begin with this post. Life is so unpredictable. I have stage 4 non small cell lung cancer and have been receiving chemo treatments for several months. My oncologist says I will need maintenance chemo for the rest of my life. The hope is the tumor will shrink. It has already and I am trying to stay positive it will even more. I'm not even going to say how awful chemo is except it is pure hell on the body. My biggest concern is the kidney Ryan gave to me . Thank God it has not been negatively affected by the treatments. I couldn't deal with that possibility.

Everyone says I'm so strong. I'm really not. I feel like my life is not my own. It feels like I'm watching someone else's sad life unfold. My husband and daughter could possibly have to endure another loss. I assure you I'm not giving up. I have days that I do feel I can beat this. Especially since I'm still fighting for Justice in Ryan's death. I have much to accomplish. yet.

It will the three years on August 11th that Ryan was taken from us. It still feels raw , not real. I still feel like I will wake up from this nightmare and he will be here by my side. It was all a dream I tell myself in those moments between half awake and half asleep.

I met a fellow grieving mom a while back. Her beautiful brave son Jared was diagnosed with Chiari a year ago. Sadly he lost his battle just three months later. Much the same way as Ryan. His very brave mom Tina and I have become best friends and sisters. She has been a God send in my life. We believe it was our sons who brought us together. One thing Ryan's death taught me was not to wait to do the things you want to do. No one knows what tomorrow will bring. Tina and I have so much in common and I know our son's would be happy we met. We get together often,cry together and lift each other up.

Tina and I danced in the rain after my cancer diagnosis