chiari angel

chiari angel

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'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 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 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


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 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. 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 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 he was not answering his phone. I called at least twenty times ...he finally picked up. He said 'please don't cry 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 are fighting to die and our son is fighting to 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....