chiari angel

chiari angel

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 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 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 matter what never get over never 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 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 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

1 comment:

  1. I read and try to understand something that is so terrifying to others. I think you put it in perfect perspective when you wrote "Was it too scary for them to face the possibility that life could end so young and sudden?" I have Chiari and I am blessed to be alive. I have had more turn their back on me than not. I think it is natural for anyone to try to figure out why, at a time when you need those that were once close to you the most, they could be capable of just walking away as if they never knew you or Ryan. I don't personally know you, but I often wonder how you are doing and I will look up your profile page to see if you have posted anything new since the last time I checked. My personal realization is that those that turned away when we needed them the most, never really loved us. Once someone has gone through such traumatic times we seem "too real" for them as they make their way through their own lives. Those are the ones too that I believe, no matter how active they want everyone to believe they are, they are in fact empty souls. I would not wish Chiari and certainly not the death of a child on anyone but I think that for some that is the only time they may ever experience true, meaningful feelings in their life.These are people that don't know happiness or sadness. All else is just their pathetic attempt at convincing others of their own happiness. People like us that are grieving don't fit into their life of not facing reality. Because the reality is this can be anyone's journey at any time. I was compassionate before my illness and I think that my battle with Chiari has made me even more compassionate and aware of those that are grieving and/or in need of support from a friend or loved one. For that, I am very thankful. Keep posting and I will keep praying. God Bless you and your daughter as you grieve. I pray your grief ends with strength and even more compassion for life. <3 I pray as your grieving lessens, never to go away, but to always be a reminder of the great love you had for your son and the love that he had for you. Keeping his memory alive and helping others at the same time...I know God is very happy with you. You will see Ryan again one day as we will all leave this world, for we are all just passing through. It does not take personal grief of any kind to be a compassionate person...and it shouldn't. <3