Writing for Ryan, Chiari Documentary

https://www.facebook.com/chiaridocumentary/

Coming soon the documentary about Ryan's life as well as others who are suffering with Chiari or have lost children to this devastating condition. Please like and follow our facebook page. Watch as we progress on this journey. Writing for Ryan and
Chiari Documentary!

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
 

http://www.wstfcure.org/syringomyelia-stories--profiles.html

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

Ryan's Gift

this HTML class. Value http://m.nydailynews.com/life-style/health/tennessee-mom-receives-kidney-dead-son-article-1.1531273

http://www.chiarifund.org/

Middle of the night thoughts of a grieving mother

Life is much less meaningful now. I don't know any other way to describe it.  Things I will never have the joy to experience because my only son was taken too soon, the what if's. The grandchildren I won't have. Would they have looked like him? I am left with longing and yearning for what could have been. It's not fair. But even more I grieve for what Ryan lost. At the ripe old age of 20 to be gone in the blink of an eye. The things he never had a chance to experience. I hurt so much for him. It feels like a punch in the gut.

My son was taken from me and my faith was destroyed.  My faith in the medical profession is now non existent . I fight for answers and accountability but the process is long and drawn out.
I struggle with day to day activities.  Just getting out of bed some days is difficult . But with everything in me I pull myself together and continue on this journey .
I will not let it destroy me because I am Ryan's voice now. It is up to me and Ryan's dad to get answers as to why our son is gone. Why were our pleas for help gone unanswered and dismissed? Why after decompression surgery was his brainstem even more compressed ? And so bad as to cause his braindeath?

Ryan,
You were a beautiful chubby cheeked happy baby. Your Dad nicknamed you 'butter bean'.  You had the biggest and bluest eyes that captivated everyone around you. You were and still are loved so very much. You grew into a gorgeous young man. Broad shoulders. Dark mop of hair that somehow always managed to fall over your eyes. You had a shy smile and you turned heads when you walked into a room. Gentle,kind and respectful of others. I am so blessed to have known you my son. To be your mother was a gift. You had a great sense of humor and made us laugh at your silly voices and dance moves. Oh my, how you had us rolling in laughter. We haven’t laughed like that since you left us . The light of our life. I know you are watching over us now. Your light is infinite. And so is our bond.
Love,
Mom,Dad,Sissy,Glen,Hunter,Grayson and Hailey


I have grown old. The lines on my face tell a story. A sad story of pain and grief. Seeing my only son die right in front of me.  I have grown old. The dark hollows underneath my eyes are from sleepless nights and many tears. I have grown old yes, but I have also grown strong. I have seen the worst and experienced the unfathomable. What else is there to fear? Certainly not death.  I am now fearless. I am a grieving mother.

Cold Winter Broken Heart

The cold winter darkness has set in. It sits heavy on my heart and deep in my bones. I sit up all night and sleep all day. I can't escape reality. I want to but I can't. I dream of you Ryan. Brief sweet visits in my fitful sleep . Why do they have to end? In every beautiful dream you slip right through my hands. Your laughter fading away. I wake up shaking, my pillow soaked in tears. This life I am forced to live without my child is hell on earth. I scream, pound my fists it's not fair!! I fucking hate this so much!! I have held back so much pain so much emotion in order to pretend I am ok. I am not ok! I hurt, I have grown old before my time. I'm mad as hell! Why was my childs life cut short and I still live? You were right my son. You told me it was a cold cruel world. The wisdom of a young man on his deathbed fighting for his life. You endured too much coldness and cruelty in the end.   Your life my child mattered and you are loved.

I miss you so much..your smile and laughter.
Every breath I take I take for you. 💔💔
https://youtu.be/_leoVpKZcTI

A different kind of waiting list

The reason I started this blog Life on the Waiting List was because I wanted to share with others the day to day of living with kidney failure while waiting on a transplant list. I wanted it to be a positive blog. I wanted to help others waiting as well. Of course things did not turn out as planned .
I have thought about changing the name of the blog or just forgetting it all together.  But I won't and I can't for two very important reasons . One being that Ryan suggested the name Life on the Waiting List . And Two I can hear him in my ear,'Tell them Mom,tell them what I went through...don't give up Mom'. I can still hear the way he said MOM! in the same urgent tone he always used for trying to convince me of something. Besides the name still fits. I am waiting still,not for the original reason but a much bigger reason. I am waiting to be reunited with Ryan again. So the name will remain . Isn't life just one big waiting list anyway? This story has not ended.  There is more to say and I  will keep writing . There is no closure with the death of a child. There never will be. I am still a mom and Ryan is still my child.

Chiari and so much more...

May is Ehlers Danlos Awareness Month. Watch the video above and learn about all the related conditions that often accompany Chiari Malformation. There are many.
One of them being Ehlers Danlos Syndrome.

I would like to thank my friend Abby Long for creating this beautiful informative video and for including Ryan in the photos.

God, I pray for those who are suffering and those who we have lost. I beg of those in the medical profession...Do not ignore your patient's symptoms. Because they can be varied and many. Medical Zebra's do exist. It is your duty to figure it out and save lives. Isn't that why you chose a medical career?

Time stands still.

I've lost track of time. It will be two years on May 12 th that Ryan was diagnosed with the hell that is Chiari Malformation. Then the three months of pain, fear, doctors not listening or trying to save my son's life. I was going to write about what happened after the kidney transplant. Honestly I don't care to talk about it anymore. But I will say this. I was having heart issues just hours after my transplant. At the exact same time just a few steps away my husband was having a heart attack. The doctors were opening up his chest at the same time my heart was being shocked back into rythem. Ryan's death nearly killed us both. They gave my husband very little chance of making it through the night. Meanwhile I was lying in the hospital mourning my son and husband and thinking I would have to plan two funerals.

By some miracle my husband pulled through  for a second time in two weeks and even surprised the doctors. Now..neither of us will ever be the same as when Ryan was alive. This is our life now. The world looks different. Grey , scary. Ryan..our only son. Hopes and dreams lost. A senseless death.

I suffer with severe Post Tramautic Stress. No one warned me this would happen. I feel as though I can't breathe. I panic and get sick to my stomach. The longing in my heart for my son is just as painful as it was the day he died. I have resolved myself to this fact. The pain of having my child ripped away from me will remain the rest of my days. Death would be a relief. But I have unfinished business to attend to...besides being here to see my grandchildren grow up. I have to speak out for Ryan and fight for justice in his death. This is what enables me to put one foot in front of the other despite my disabling PTS and panic attacks.

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 baby..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...

Ryans last words about his struggle with Chiari

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.

A Broken Family....

I have put off writing this post for a while now. But I feel however difficult it is I must write it. I have a burning need to tell our story until I can come to the realization that indeed it was not a bad dream that I can wake up from. Maybe then I will get some sort of  peace. But then how can one have peace of mind knowing their child is gone forever. I'm just not at that place in my grief. Ryan was just pronounced brain dead and I was set to receive his kidney the following day. But first my daughter and I had to tell my husband that our son was gone. We were advised to warn his medical team of what we were about to do. My husband still in the hospital recovering from his attempted suicide was in no shape mentally to receive this horrible news. The doctors feared that in his fragile state this news would push him once again over the edge. My daughter and I however.... did not care at that point.  As terrible as that sounds...we were so angry ...so hurt...and I wanted to punish him . Punish him for abandoning his son and not being there for Ryan... our daughter...for me. How dare he have a mental breakdown when we needed him most! Why couldn't he just stand up and be a man. I know these are harsh words...but that was my true and honest feeling. The man I was married to for 30 years let his children down ...let me down. My daughter and I were going through hell and he bailed on us. Ryan had been fighting to live and he was fighting to die.

As we walked into the room my husband looked at us and smiled...it was heartbreaking that he was so happy to see us.  As the medical team stood by I sat down beside him and took his hand...barely able to get the words out I told him our son had died. He screamed...NO...NO...oh god no...my beautiful boy....those damn doctors...they killed my son! We cried together..the three of us. My heart softened and I held my husband and cried. The grief became so overwhelming and the nurse became concerned. Against my husbands wishes she gave him a sedative to calm him down. I then told him I had a big decision to make and I needed his help...that Ryan's kidney was a perfect match for me. Without hesitation he said... yes ...yes... please...you have to do it! Ryan would have wanted it. My daughter and I left my husband alone in his grief and checked into the hospital to prepare for the surgery. All I really wanted to do was to go back and be with my son...to hold him and to wake up from this horrible nightmare...because this couldn't be real! I was going to wake up any moment and everything was going to be as before. Before Chiari Malformation....before the mental breakdown....before the doctors turned my son away while he was dying begging for help. My family was broken...devastated.


Lying in that hospital bed waiting for surgery and thinking about it all... it occurred to me that there was a possibility I may not make it through the surgery. That thought became comforting to me because maybe I could join my son and this nightmare would be over. I wasn't thinking how that would just devastate my family even further. But now looking back...I realize how my husband must have felt in his darkness. First finding out Ryan had Chiari...the brain surgery...the blank looks on the faces of doctors while we were begging them to help our son...to fix what they did to him...to treat our son as a human being. Days turning into weeks of  watching Ryan get worse and worse....becoming a shadow of his former self...dying.   Days after the transplant the media became interested in our story and after they interviewed me someone wrote me a nasty hurtful comment asking... why would I want to receive my son's kidney and go on living while my son was dead. Well.. I didn't want to go on living...but thank God and thanks to my son I am here for a reason. For my husband ..my daughter..my grandkids. I am alive to fight for justice for Ryan and raise awareness for Chiari. To keep my son's memory alive. But post surgery was not without complications and there was some moments that I thought my wish to be with Ryan  was coming true....


To be continued....

Dance Again
I see a waltz frozen in time, dancing and spinning, spinning and dancing. My ear pressed up against his chest, I hear his heart beat over and over again. Spinning and dancing, dancing and spinning, in this... our frozen waltz in time.

Through the mist of this dance, I see a small ray of light. I know in my heart this must be the sun, inch by inch... I feel it's warmth, slowly melting our frozen waltz in time.

I cry out to the sun, no please go away... please don't wake me and make my waltz go away. Let me continue dancing and spinning and spinning and dancing in this... our frozen waltz in time.

Yet... the sun keeps coming, rising higher and higher, melting away this frozen waltz that I have danced with you for so long.

Again, I cry out, No please go away. My hands are slipping and I can't hold on and the sound of his heart is fading away, please sun... Leave us alone.

The sun is now above me and the dance floor has disappeared, but tell me sun, please tell me, why my frozen waltz is no longer here?

Then I opened my eyes, I started to smile, Oh God... It was just a dream. Me and my Son in this frozen time, dancing and spinning and spinning and dancing, in this frozen waltz in time.

Thank you God for One more waltz, One more dance with him, and when I close my eyes tonight, please let me dance again. Lisa Hart

https://www.facebook.com/events/661401243946637/?ref_newsfeed_story_type=regular&fref=nf

Let me grieve....

I was supposed to attend an extended family gathering yesterday but I didn't make it. It was a celebration of achievement by one of our youngest relatives. I was not there simply because I am not able to celebrate any of the achievements my son might have and should have had. No college graduation..no wedding..no birth announcements. Sounds like self pity I know. A trait I never wanted to have.    Why can't I just pull myself together and at least pretend to enjoy these things? In all honesty I feel no guilt for not attending. If you have lost a child perhaps you know what I am talking about. I want to stop right here before the next sentence to say that friends and complete strangers came out of the woodwork to offer help and support. Some called everyday just to check on us never once mentioning anything going on in thier lives but just to say I'm here if you need anything. Just mere days after Ryan was taken from us family members went back to their everyday lives as if nothing had happened and my daughter and I were left alone with our grief..my husbands mental breakdown..and my transplant recovery.  Some we never heard from again. Was it too scary for them to face the possibility that life could end so young and sudden? Maybe made them realize that no one is immune to such tragedy? I did recieve a few phone calls from family over a handful of weeks. But they stopped when I could not indulge in their laughter or stories about their children or planned trips. It was too much for me to even pretend to be interested. Frankly I have become ashamed of my family's ignorance to not be able to see past their own little bubble and percieved problems. Therefore..I let them be and not bother them with mine and my daughter's grieving process.

I have concluded this does not make me a bad person but instead a grieving mom trying to navigate my life as it is now...without my child. Maybe I will find my way through it or maybe I'll have to adjust my sails and sail on without those who can't understand. Let me make this clear...When you lose a child ...no matter what age...you never get over it...you never forget...you will never be the same! The pain changes you and yes it is like no other pain you could ever experience. Heart and soul crushing. I have to be in what I call a safe zone. A place where I am allowed any emotion I want to feel without redicule and judgement. I need to be able to cry,scream, curse,reminisce,go over and over it if I need too. Until I can wake up one morning and say' today I'm okay'. I don't need to hear 'it was God's plan or that Ryan is in a better place. Of course I know he is in a better place but only because he is no longer feeling the unbearable pain and anguish. His place should be here... alive and well.Celebrating all those wonderful  milestones that he was robbed of. I refuse to believe it was God's plan because God did not plan for a doctor to use bad judgement and kill my son.                        

The pain that comes from having your child ripped from you is so unbearable and earth shattering that statues have been erected for centuries depicting the Grieving Mother. I am facinated by these beautiful statues. The grief,pain and anguish forever etched in stone. Beautiful and heartbreaking all at once.


My PTSD is getting worse. It is scary,debilitating and comes when I least expect it. And now it enters my dreams and interrrupts what little sleep I get. One particular dream I have over and over goes like this. I am back in that cold sterile hospital room with my son and he is screaming in pain.His head hurts ..his neck hurts..his back hurts. I am alone just me and him. I panic because I can't stop his pain. I keep pressing the hospital call button but no one will answer me. Ryan is screaming..'please someone help me'! I run into the hallway screaming 'oh God please someone come help us'! I can't find anyone,no one will come. I panic. I am standing in that hallway screaming for help for my son and no one comes! My child is in pain...my child is in pain!! I hear Ryan screaming and I hear myself scream...I raise my hands and ball up my fists and start beating myself in the head ...clawing at my face until it bleeds. I am beating myself and clawing and screaming. I want to take his pain away and put it on myself because no one will help him. At that point I wake up and I am shaking and crying..because even though it was dream it was also real. No one came ...no one would help my son.

These wounds won't seem to heal
This pain is just too real
There's just too much that time cannot erase

When you cried I'd wipe away all of your tears
When you'd scream I'd fight away all of your fears
And I held your hand through all of these years
But you still have all of me

You used to captivate me
By your resonating light
Now I'm bound by the life you left behind
Your face it haunts my once pleasant dreams
Your voice it chased away all the sanity in me

My Immortal

Very soon I will be continuing my story from my last post titled 'Mom what did I do to deserve this?' Our story did not end there. There is a lot more to this ongoing journey. Please... if anyone is interested in helping me turn our story into a book you can contact me at mcgeezona@yahoo.com

Mom..what did I do to deserve this?

What happened next after that fateful day that Ryan passed is surreal. I have moments of clarity but it felt as though I was watching a story unfold that was not my own. In my mind I couldn't grasp the meaning of brain dead. I remember my family and friends being there and the support they gave me but everything was happening so fast and I didn't understand.

I remember the flurry of activity in the room. My son being on life support. The smell of disinfectant.The sound of the machines. The doctor who was called in pacing back and forth wringing his hands. He told me Ryan's doctor was very sorry for our loss but was ashamed or embarrassed to come in. He performed all the tests on Ryan to confirm brain death. He shot ice cold water in Ryan's ears to hopefully illicit some sort of responce. Very painful I'm told. But Ryan never even winced. He manipulated his eyeballs but Ryan didn't flinch. It was traumatizing to watch because Ryan's eyes were open and fixed. Oh God..it's so hard to see your child like this! I've lost family members before and held the hand of  loved ones dying  but nothing compares to this! Nothing prepares you for watching your child suffer and die. Weeks earlier Ryan told me and his doctors he felt like he was dying. They scoffed at us telling us he needed pychcological help. After his doctors told him that he cried out to me and God asking 'what did I do to deserve this? I always tried to be a good person why don't they believe me!? I reassured him over and over this was not his fault but the fault of arrogant doctors. I promised him we were not giving up. I hate the fact these doctors made my child feel this way! I struggle now with anxiety and anger over it . I remember my sister leading me into the chapel where we fell on our knees  begging God for help. But there was no devine intervention to come. God had plans already set in motion for my son.

Tennessee Organ Donor Service was called in and my daughter and I were led into a private room. A sweet lady hugged us tight and offered her condolences. She handed us papers that contained my son's wishes. 'Ryan Andrew McGee All Usable Organs And  Tissue To Be Donated'. 'Your son is a hero ' she said with tears in her eyes. I looked and saw Ryan's signature at the bottom of the page. The sweet lady said 'we know you desperately need a kidney and your son would be a perfect match'. We were stunned. My daughter turned to me and said' please mom ...do this...Ryan wanted it  ...please mom...I've lost my baby brother and I may lose my dad..I can't lose you too!' This sealed my decision to recieve my son's kidney.

But first..my daughter and I had one more heartbreaking thing to do...we had to go to my husbands room in the hospital where he was still very ill and tell him his son had passed.

To be continued....

Bucket....

When I was thinking of a title for this post I thought of the last word my son said to me before another tonic clonic seizure shook his body and rendered him brain dead. I was sleeping on my cot beside Ryan's hospital bed as I had done night after night never leaving his side. It had gotton to a point that he would get extremely upset even if I went into the restroom that was only a few feet away from him . I did everything I could to stay in his eyesight or at least earshot  to reassure him I was still there. August 10th at 5:30 am I awoke to him moaning. Jumping up from my cot in a panic I could tell this was a different kind of sound coming from my child and something I can never forget. It haunts my dreams. A deep death rattle. He managed to say 'Bucket' and I knew what that meant. For weeks and weeks after the surgery he had vomited what appeared to be spinal fluid and stomach bile on a daily baisis. So much so that he had started keeping a bucket by his side at all times. Nothing helped his nausea. This was always followed by a seizure. And on that morning this is what happened....Bucket...vomiting...seizure..and just like that ..my baby...my world was gone. It was as if someone came in the room and turned out the lights. My world went dark and gray...all hope was lost.

Family and friends showed up as we gathered around and prayed Ryan would respond to us. I begged and pleaded for him to blink or squeeze my hand. But there was nothing. He was taken to surgery with a 1% chance of recovering. It was not meant to be because God had a different plan for my son. We were about to find out very soon what that plan was. In keeping with Ryan's wishes his organs were to be harvested to save others from dying including me. What love my child had for others! He was an amazing young man always thinking of the needs of others. My beautiful son was pronounced brain dead the following day. Alone...my husband still in critical condition from his attempted suicide and unaware our son had died....I sat by Ryan's bed. I remembered when he was a baby and holding him...looking into his big blue eyes and thanking God for blessing me with another child. And now God was taking him away from me. I took Ryan's hand and told him how much I loved him and how brave he was. I told him it was okay to go ...that his grandma was there in Heaven waiting for him. I placed my Lord's Prayer bracelet in his hand then I pulled up this song on my phone and holding my son for the last time in my arms I quietly played it for him....Outside his room I could hear a nurse crying.

I can only imagine 
What it will be like 
When I walk 
By your side 

I can only imagine 
What my eyes will see 
When your face 
Is before me 
I can only imagine 


Surrounded by Your glory, what will my heart feel 
Will I dance for you Jesus or in awe of you be still 
Will I stand in your presence or to my knees will I fall 
Will I sing hallelujah, will I be able to speak at all 
I can only imagine 

I can only imagine 
When that day comes 
And I find myself 
Standing in the Son 

I can only imagine 
When all I will do 
Is forever 
Forever worship You 
I can only imagine

                                                    

To be continued....

Broken but still standing....

Almost nine months has passed since my world came crashing in on me. My perspective of the world has changed dramatically. Our happy little world can change in the blink of an eye. I want everyone to know we were just like any other family.  Things that I once thought could never possibly happen to me or my family did happen and happened all at the same time. How much can one person take before they break? I am broken but still standing.


I told myself I was going to be completely honest in this post about the events that took place during those three horrible months last summer. Sort of a trial run for the book I want to write. I want others who are experiencing loss and heartache,pain and suffering to read it and be blessed in some way by my famly's experience. It started on May 12th 2013 when our son was diagnosed with Chiari Malformation at the age of 19. My husband was trying  to hold our business and livlihood together while our son Ryan was ill and I was literaly dying from kidney failure. After Ryan's brain surgery he was finally able to come home after being in ICU for nearly four weeks. But he quickly became very sick and started having seizures. He suffered neurological damage and became totally dependant on us for even his most basic needs. We watched our son go from a healthy happy young man to a shell of his former self. He could not even walk a few feet without collasping into a seizure. It was exhausting for his frail body


I don't know or understand to this day how I made it through the pain of my kidney failure while never leaving Ryan's side. Going on no sleep barely remembering to take my medicine. But a mothers strength is powerful and I would have walked through fire to be with my son.It was as if I were outside my body looking in. Something deep inside me took over. Love for my child.


Unfortunatly my husband was having a harder time. He became increasingly depressed. I was busy caring for Ryan and was blind to my husband's downward spiral. And in all honestly the health of our son was the only thing on my mind. I love my husband dearly and never expected the worst to happen. I trusted him. But despite this after watching our son suffer...the doctors pushing us away and ignoring us...my husband snapped.


Ryan was back in the hospital...the last two weeks of his life. August 1st, 2013. I stepped out of Ryan's room and called my husband . It was nearly noon and he was late showing up at the hospital. He promised us he would be here..now he was not answering his phone. I called at least twenty times ...he finally picked up. He said 'please don't cry baby..it will be okay'. Then he hung up. I called my daughter and told her something was wrong... come get me ...we need to check on dad! By the time we arrived it was too late. He had already tried to commit suicide in the most graphic violent way possible. I walked into our home my daughter behind me. I saw him on the floor in a pool of blood his body lifeless. I turned around pushing our daughter out the door so she wouldn't see the horror... but she saw anyway. All I can remember is screaming and feeling like I wanted to pass out. I had already called my brother on the way to my house and thank God  he was right behind us. He saved my husbands life by stopping the bleeding until the ambulance came. This started weeks and weeks of my husband  being in the hospital and away from us and missing his sons funeral. But he too was ill and I had to accept it and let go for the time being. I had already braced myself that he might get his wish to  die and was angry that he wanted to die. I said aloud ...you are fighting to die and our son is fighting to live...how dare you! In fact Ryan was dying and no one in the medical community would help us. I had to be with our son. I went back to Ryan's bedside and pretended that Dad was at work and was just fine. Ryan never knew what his dad had done.I am at least thankful for that.


That night back at the hospital...I pulled my cot as close to Ryan's bed as I possibly could. I put my arm around him and wished I could crawl in bed with him and hold him closer. He was drifting in and out but in terrible pain. Nothing they gave him would touch the amount of pain he was in. Oblivious to the fact that his dad was in surgery and the doctors were trying to repair the self inflicted damage he had done on his throat,heart and abdomen... Ryan began mumbling in a low voice. I asked him who he was talking to. He replied...'I'm talking to dad..he's here '. I said 'oh that's right honey..he is here'. At that moment I felt my husband was no longer with us. He did survive ..but just barely and there were more close calls to come.

To be continued....

At the hands of an unskilled physician Ryan McGee passed away August 11th 2013 after suffering for 3 months from Chiari Malformation and IIH. His death was preventable had his doctors listened to us.

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

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 me...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 deal..you 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?...how 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.

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 boy...my joy...my 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!

Son's death helps save mother's life through organ donation - WSMV Channel 4

Son's death helps save mother's life through organ donation - WSMV Channel 4

Somewhere in this world Ryan's organs are helping someone live a full and healthy life. His heart is beating in someones chest. His lungs are breathing life into someone who couldn't breath before without a struggle. His right kidney is filtering toxins out of someones body. His left kidney is doing the same in my body. Thanks to my son's gift I am healthier  than I have been in years. His pancreas and liver saved two other lives as well. Because of Ryan's gifts of life I have found some peace..even if it is just a little. I still grieve..I still hurt... I still want him here.. but at least I have the comfort of knowing a piece of my son  lives on. Fulfilling someones dreams even if not his own. I wonder if they know the pain he endured in his last days and what a special and kind person he was. The sacrifice he made. If I could speak to them I would say... live life and enjoy every moment....take special care in the gift you have been given....don't take anything for granted....his life had meaning and purpose. Ryan would be happy to know he was able to help someone else. That is what he did in this life as well as the afterlife. My son my Hero...I had 20 precious years with the privilege of being his mom. He was the greatest young man I had ever known.

To Remember Me - I will live forever Robert N. Test  

The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital; busily occupied with the living and the dying. At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped. 

When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don't call this my deathbed. Let it be called the bed of life, and let my body be taken from it to help others lead fuller lives. 

Give my sight to the man who has never seen a sunrise, a baby's face or love in the eyes of a woman. Give my heart to a person whose own heart has caused nothing but endless days of pain.
Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.
Give my kidneys to the one who depends on a machine to exist from week to week.
Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.
Explore every corner of my brain.
Take my cells, if necessary, and let them grow so that, someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain agianst her window.
Burn what is left of me and scatter the ashes to the winds to help the flowers grow.
If you must bury something, let it be my faults, my weakness and all prejudice against my fellow man.
Give my sins to the devil.
Give my soul to God.

If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. If you do all I have asked, I will live forever. 

Robert N. Test

THE CORD....

The pain comes in waves...it is always with me but the intensity ebbs and flows like the ocean. A song I hear or a face in the crowd that even remotely resembles my son and I am again stricken by unbearable grief. I am forever changed...my life will always consist of before Ryan's death and after Ryan's death.Losing a child is the worst possible hell one can go through.

On my mantel there is a Photo of Ryan...His donate Life hat...Two Silk Butterflies from his funeral...A Plate that says 'I Love You Mom' that he made me in 1st grade and a Box filled with his ashes. Inside me I carry  the kidney he donated to me in his death. These things besides my memories are all I have left of my precious boy. People have been so kind and have comforted me in my pain. I know Ryan is grateful for that because right before he died he asked me a million times if I was going to be okay. It was as if he wanted permission to let go of his pain and suffering. So for Ryan.. my daughter and husband and grandchildren I have to be okay.

But how do I do that? Someone tell me. There is no magic wand and time will not heal. The only thing more heartbreaking than seeing your child suffer is watching them die.
                             

We are connected,
My child and I, by
An invisible cord
Not seen by the eye.

It's not like the cord
That connects us 'til birth
This cord can't been seen
By any on Earth.

This cord does it's work
Right from the start.
It binds us together
Attached to my heart.

I know that it's there
Though no one can see
The invisible cord
From my child to me.

The strength of this cord
Is hard to describe.
It can't be destroyed
It can't be denied.

It's stronger than any cord
Man could create
It withstands the test
Can hold any weight.

And though you are gone,
Though you're not here with me,
The cord is still there
But no one can see.

It pulls at my heart
I am bruised...I am sore,
But this cord is my lifeline
As never before.

I am thankful that God
Connects us this way
A mother and child
Death can't take it away!

                  

Loss, Heartache,Love ,Strength..

I realize it has been a while since I blogged but so much has happened in my life I have not been able to focus on anything. I have actually had to remind myself to just breathe. My sons illness was first and foremost in my thoughts and everything I have done these past few months. Sadly he lost his battle with Chiari Malformation on August 11th.  The pain I feel is unbearable at times...everywhere I go everything I do is a painful reminder of what I have lost. It is true that nothing compares to the heartache of losing a child. I have not even begun to process everything that has happened. You see... the whole time my son was ill my husbands mental health suffered. Over several weeks he became quiet and  withdrawn completely shutting out his family. Then it happened...while our son was in the hospital this last time my daughter and I came home and found my husband in the garage. He had violently tried to commit suicide. He simply could not handle the pain of watching our son suffer any longer. Not getting any answers from Ryans  doctors as to why he was so sick, trip after trip to the ER just to be told there was nothing wrong with him. My husband felt helpless to help our son. They simply did not know enough about Chiari to treat it properly. I am not letting them get away with this if it takes the rest of my life. Ryan had become so weak and could no longer walk and was having seizures almost everyday. His doctors denied he was having seizures because they were not considered epileptic. Although in fact it was a seizure that caused his death and herniated his brain stem crushing his spinal column. I was by his side when it happened and it was very quick. Ryan was pronounced brain dead. My husband was fighting for his own life and we did not know if he would make it. I have never felt so alone in my life.He remains in the hospital and has a lot of work ahead of him to hopefully recover physically and mentally. Sadly he could not even attend Ryan's funeral.

After Ryan's death we were told he had signed his organ donor card. I remember a while back him coming home and being so proud to tell me. It was extremely important to him because he had watched me suffer for years with kidney failure. He wanted so much to donate his kidney to me but I was fearful he would someday inherit my illness. Ryan donated all of his organs. His heart,liver, lungs ,skin ,pancreas. And one of his kidneys went to me! So many people were saved and lives made better because of my son's generosity. I find some comfort in that fact. Having the surgery so soon after Ryan's death was a hard decision. But one I don't regret making because Ryan wanted  so badly for me to be well. We talked about it so much and made plans to go to the beach when we both were well. Our favorite place in the whole world. Now I will be taking my son's ashes to the beach...

his final resting place. I will also be his voice for Chiari and work to raise awareness so no one has to suffer the way my son did. I will advocate for organ donation as well. The legacy he left behind will be with us always.

I love you Ryan. You are missed everyday by all of us...Sissy,Glen,Hunter,Grayson,Hailey,Genero,Dad and Me.

Hero needed..

It has been a long week. While most people were celebrating the 4th of July with their loved ones my husband and I spent 2 whole days in the er with our son. Still sick and throwing up from his chiari surgery last Monday he became so weak he could not move and his arms went numb. The er doctors checked his shunt for blockages (there were none) and gave him a bag of IV fluid and anti nausea medicine. He continued to throw up even with the pills and on Wednesday morning he had his first seizure. He collapsed and we had to call an ambulance. They put him on anti-seizure meds,gave him a bag of fluids and glucose and sent him home again. Last night while throwing up he blacked out on the bathroom floor twice. He has a doctor appointment on Tuesday and I am going to insist that he be re-admitted to the hospital. When your child is sick it is so hard to concentrate on anything else other than getting them well again. I feel so helpless as to where to turn now. I feel as though the doctors are not listening to us. They just shake their heads and say this is uncommon but happens sometimes with chiari. NOT ACCEPTABLE!

I really need to be strong and healthy so I can be here for my son. I urgently need a kidney donor and now more than ever! Please, if anyone reading this is interested contact Vanderbilt Transplant and give them my name, they will instruct you on how to proceed with the testing. Please help me live so I can take care of my son. Thank you for all the prayers.

Dealing with a chronic illness of any kind is demanding and life changing. I can handle the effects of my own illness and have been doing just that for many years. I continue to wait for my transplant,my potential donor is unable to donate at this time and may never be able to. It is my son and his diagnosis of Chiari Malformation that is foremost on my mind at the moment. He is still having a lot of problems even after all the surgery and everything he has gone through. The decompression and shunt has not relieved any of his symptoms and the doctors cannot give me any straightforward answers.  I am one upset mama right now and am going to battle for my son. We are just now learning how devastating CM is for many patients. Unfortunately Ryan is one of the 25% of  those who do not do well after the surgery.Many prayers are needed right now for my son and also for me to stay strong.

Not much happening in way of getting a kidney transplant any time soon. We have hit a snag. My cousin who has gone through a good part of the tests to be my donor has been ill and unable to complete the final testing. We have been informed by the transplant team that because both his mother and mine (sisters) had diabetes he could be ineligible to donate. Still,as soon as he is feeling better he is going to go ahead and try anyway. I am just taking it a day at a time. Besides, I am concentrating on my son right now,while trying to stay as healthy as possible. I have learned a lot about Ryan's diagnosis of Chiari and it has not been as easy a recovery as I thought it would be. I now know there is no cure for CM and is a debilitating illness. The shunt that was placed to drain his cerebral spinal fluid needs ongoing adjustments and is only working half the time.He is in tremendous pain a lot of the time and I am not sure what our next step will be until his  doctors appointment next week. I have to be completely honest and admit that lately I have been so angry and have been asking God why? I am ashamed to admit that some days I have very little faith. But then I realize that God has been with me through it all and pulled me through some really scary moments. I don't know how I would have made it this far without believing in Him. Even though my faith is weak I believe God will strengthen me. 

 The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. (Isaiah 40:28-31)