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 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 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 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... 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 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 fix what they did 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 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