chiari angel

chiari angel

Thursday, July 24, 2014

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....

Wednesday, July 23, 2014

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

Sunday, June 1, 2014

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

Monday, May 12, 2014

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....

Wednesday, May 7, 2014

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....

Friday, May 2, 2014

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....

Thursday, March 27, 2014

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.

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 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.

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 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!

Tuesday, October 22, 2013

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.

Saturday, October 12, 2013

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

Friday, October 11, 2013

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!


                        

      Tuesday, August 27, 2013

      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.





      Friday, July 5, 2013

      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.

      Monday, July 1, 2013

      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.

      Sunday, June 23, 2013

      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)

      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 floor..in 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 ..life 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 her..it'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"



      Saturday, April 27, 2013

      I keep telling myself  I am so close I can't give up now. I've had to give myself a lot of pep talks this past week. Last Tuesday night I ended up in the er again when I became ill...dizzy,uncontrollable chills and I almost passed out. Long story short...it is very easy to quickly become dehydrated when you have CKD. I haven't been able to eat very much because of  nausea that just won't quit. The doctors increased my nausea meds. but it only works for a short time and then it's back. We thought at first it was just a stomach virus but that doesn't seem to be the case. I have never cared for eggs very much but now an egg and dry toast is just about all I can handle without becoming ill. Sleep is a welcome escape and I am doing a lot of that. A nurse who trained in a dialysis unit told me that kidney patients are some of the strongest and most stubborn people ever. Well, I'm not feeling very strong right now...but I promise you this...I will not give up.Because things are moving along rather quickly now with a possible transplant by summer maybe June! I am still guarded by fear of disappointment. But I have to hold on to something right? I get so afraid sometimes and have decided to bite the bullet and ask my doctor for a little something to calm my nerves. I think I deserve at least to have peace of mind. Things change so quickly with this disease...hour to hour ...moment to moment. I never know what to expect when I wake up in the morning or how my day is going to end up. But I guess that could be said for anyone. That is life.

      Tuesday, April 23, 2013

      Good News....

      I have to be at Vanderbilt for labs at 7 a.m. but I can't sleep. Yesterday was a flood of emotions. I woke up yesterday morning to a phone call from my cousin Joe. He left a voice message that said..'Zona...you have to call me ..call me now'!! I immediately called him back thinking something terrible had happened because he was crying. But they were tears of joy...We are a perfect match!! This could be the end of  a nightmare and the beginning of a new life! I think we talked no less than 5 times yesterday..I had to keep pinching myself and asking if this was really happening! I feel so very grateful and fortunate right now! Of course there are more tests to be done..but I have a good feeling this is the one. Next step is Vanderbilt is flying him in for a full day of tests within the next few weeks. If he passes...and we have no reason to believe he won't...then we will schedule the surgery! We always said we were more like brother and sister than cousins...and now in a way.. we really will be! To my family and friends..please say a prayer for us as we go through this journey. I will update our progress as we go along.
      Joe and Me

      Wednesday, April 17, 2013

       The bombings at the Boston Marathon really causes one to stop and reflect on what is most important in life.How fortunate we are to live in a country where we help one another and look out for our fellow man. Instead of running away in fear people ran toward the scene to pull others to safety! I was so moved by that. All those brave men and women jumping right in there to help.
      We never know what life has in store for us or in what direction it takes us...be it illness or death...so make the best of every moment. I am holding on to hope for a brighter future for us all.

      Wednesday, April 10, 2013

      It is a beautiful spring day here in Tennessee! Warm and sunny...the grass has turned from brown to green. The dogwoods and daffodils are blooming and the birds are chirping outside my window! Something about springtime that gives one a sense of renewed hope! My husband made the comment that it has been the longest winter here that he could remember. And it has seemed that way. My pancreatities attack has finally diminished and am pain free today except for the edema in my feet and ankles. I thank God and relish days like this..as they don't come very often. I think back to when my children were very young...before the kidney disease ravaged my body....and how much energy and stamina I had! I could run circles around everyone. For the longest time it was so hard for me to admit that I needed to slow down and listen to my body. At least until I was forced to.

      Nothing has happened with my cousin being tested to be my donor. He has been sick and has to have surgery. Although not a major surgery it has put our plans on hold. This is disappointing to say the least but I refuse to be upset this time. I will just push forward and hope for the best. I have learned it does me no good to worry and worry does not change the outcome of anything anyway. I am focused on the here and now and the glorious day I am having! Tomorrow...celebrating my beautiful daughter's birthday!


      Friday, April 5, 2013

      I have been thinking about my dad a lot today. In fact...I mourned for him all over again....even though he passed many years ago with the very same kidney disease I now suffer. I came across a documentary that was made around the same time as my dad's death. It is called Who Shall Live? It is about the rationing of dialysis treatment in the 60s and how the so called Death Panel chose whose life was worth saving and whose wasn't. Basically it came down to who could afford the $30,000 one had to pay to receive the treatment. It is hard to imagine this would ever happen today in this country...thank God everyone has access to this life saving machine . There was a part in the film when the interviewer asked a man about to be hooked up to a dialysis machine "what happened to the patients that were not chosen"? The man replied..."they're all dead"...I broke down and cried...my dad was one of them.
      Me with my Dad a few weeks before his death.
      I have not felt well all week and I seem to have slept more than usual, I am so tired. I believe the IV iron has worn off and I may be anemic again.I had 3 iron infusions last month which usually last a while... but not this time. I am also having another mild pancreatities attack. I recognize the symptoms as this is my 5th attack so far. The endoscopy I had revealed scarring on my pancreas due to my lasix.But of course.I.have to take them anyway. Usually I head straight to the er for my attacks but I am not going to this time. There is nothing they can do for me there that I can't do at home. Besides I know what to watch out for...the danger signs.Been down this road too many times.

      Tuesday, April 2, 2013

      According to Donate Life America website...

      • More than 115,000 men, women and children currently need lifesaving organ transplants.
      • Every 10 minutes another name is added to the national organ transplant waiting list.
      • An average of 18 people die each day from the lack of available organs for transplant.
      • In 2011, there were 8,127 deceased organ donors and 6,017 living organ donors resulting in 28,535 organ transplants.
      I am feeling terrible tonight...So I was trying to think of  an analogy to explain what it feels like to be a part of the statistics. This is what I came up with....you are being held hostage by your illness...you are with 115,000 other hostages...all waiting in a line...sick and scared everyday not knowing if you will live or die...and every single day an 'executioner' comes by and randomly kills 18 of you...he does not discriminate...it does not matter how old or how young you are..and everyday you see more and more hostages taking their place in line...Some get lucky and are set free and you rejoice and are happy for them because somehow it gives you hope that maybe just maybe your day will come too.


      It takes great STRENGTH and COURAGE to live with Chronic Kidney Failure. I have never considered myself  weak but this is testing my ability. I woke up in the middle of the night and realized I had slept a good part of an entire day. I was so exhausted I literally could not move to even turn myself over in bed and now all the fluid that was in my feet and legs are in my chest and lungs making it hard to breathe. This disease is  relentless...you never get a break from it...there are never completely symptom free days. I wish I could just put it away and forget about it for a day or two.

      I am wondering what it would be like to get THE CALL...every time my phone rings I think maybe this is the one. It has been over three years now since I was put on the list for a kidney from a deceased donor...but then again I don't want someone else to die just so I can live. So I no longer pray for the phone to ring. I hope and pray for a living donor...

      Saturday, March 30, 2013

      I woke up with the worst nausea...and I am itching!! No doubt it's the toxins making me so miserable.Even my eyeballs are itching! Thank God I have my anti-nausea pills on hand...I can stand just about anything except for feeling like I am going to throw up.I fell asleep last night without putting the dishes from dinner in the dishwasher and walking into the kitchen I almost lost it..just the look of dried food on the dishes..

      I am so fortunate to have a good support system through all this. I honestly don't know how somehow could  do it alone..because it is a hard road to travel by yourself. I have found there is a whole community of people out there going through kidney failure willing to share their experiences... offer advice,prayer or just to listen. I wish I had found them sooner...I can't tell you how much it helps to know that I can reach out to someone who knows what it feels like to have kidney failure. There are things you should NOT say to a kidney patient....as well meaning as they are...1."You need to drink a lot of water"...(Why? Do you want to watch me drown in my own fluids?)2."Cranberry juice will cure that"...(Cranberry juice is helpful if you have a kidney infection NOT KIDNEY FAILURE..two different things")...3."You just need to pray harder...have more faith"..(I pray constantly. and my faith is what gets me through the tough days.) You can try to explain it to the people closest to you but unless they have experienced it themselves they can't truly know. I appreciate everyone I have met along the way and pray for them everyday.

      I had mentioned before my cousin Joe is being tested to be a donor for me. I keep having these feelings of paranoia that he will back out! I have had that happen before with potential donors so it's understandable to feel apprehensive . But he put my mind at ease yesterday when I asked him if he had any hesitation. He said "are you kidding me?...we have been through too much together....I am not backing out"! We are hoping for surgery in the summer if it works out...

      Thursday, March 28, 2013

      What the Bible says About Organ Doantion...

      Genesis 2:21-23 

      So the Lord God caused a deep sleep to fall upon the man, and while he slept took one of his ribs and closed up its place with flesh. And the rib that the Lord God had taken from the man he made into a woman and brought her to the man. Then the man said, “This at last is bone of my bones and flesh of my flesh; she shall be called Woman, because she was taken out of Man.”

      John 15:12-13 

      “This is my commandment, that you love one another as I have loved you. Greater love has no one than this, that someone lay down his life for his friends.

      Tuesday, March 26, 2013

      So I'm not crazy afterall...

      It gets worse at night...the weird feelings in my head. I feel dizzy. I see things out of the corner of my eye and when I turn to look... nothings there. Or often I will blurt out something in my sleep and it wakes me up as well as my husband..My thought process is slow and I feel as though I am having a panic attack. I came across this article and now I understand why I am having these feelings..I think this has a lot to do with my insomnia as well. I feel so restless at night and even when I do fall asleep I only stay asleep for 2 to 3 hours.

      THE EFFECT OF KIDNEY FAILURE ON THE BRAIN
      Uremia
      Kidneys normally remove extra water and wastes from your blood. If they fail, blood levels of urea increase. Urea is toxic to the body and can affect all the major organs including the brain. Symptoms usually only appear when kidney function falls to less than 10 percent of normal. It precedes uremic coma and causes disorders of memory, thinking, speech, perception, emotions and other neurological manifestations.

      I experienced this in the hospital when my BUN level reached 105. I actually thought the nurse had put something bad in my IV! She explained to me that my BUN was too high. Right now I am sitting at about 85  to 90. At least I am aware of this and what is going on...but it is such a scary feeling..I want to feel better so bad. Just one day of freedom from all this sickness would be wonderful...

      I ventured out yesterday...I usually don't drive anymore but I desperately wanted to get out of the house even if for a little while. So I drove myself to the grocery store. What a sight I must have been getting out of the car and slowing making my way across the parking lot. I often wonder if people assume I must be drunk by the way I stumble around at times.I was looking at a display of sale items  when I... without looking... grabbed the nearest buggy and made my way through the store. I heard a lady yell " EXCUSE ME where are you taking my buggy!" I quickly explained I wasn't looking and how sorry I was and ohhh... I was sooo embarresed! She snatched it away and just looked at me as if I was trying to steal it! LOL!