chiari angel

chiari angel

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 Over several weeks he became quiet and  withdrawn completely shutting out his family.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.


  1. I am so sorry you had to go through the agony of losing Ryan.
    Best wishes for healing, physically and emotionally.
    Sending big {hugs}!

  2. Hi there. I'm not sure if you will read this comment soon, but my mom put in touch with your blog and I am heartbroken for you. I am so sorry for the loss you have suffered. My mom put me in touch with your blog, because she is very worried for my life as I am. After 18 years of suffering, and I am 35, I was diagnosed about a month ago with Chiari 1 Malformation along with other things. I am very scared about having my surgery. I have spoken to so many people who have had this surgery and have mixed results. I would love to hear from you and at least find out who did your son's surgery. I understand not being able to announce it publicly so please feel free to email. Again, I am so sorry for your struggles and loss, but I thank you for sharing your story.