Wednesday, June 29, 2016


Agony. Extreme and generally prolonged pain; intense physical or mental suffering. Agony. 

That's the feeling when you lose a child. Pure agony in every sense of the word. The mental is all costuming and anxiety and depression sets in regardless of your mental toughness. How can it not? When you lose a special needs child that is your entire world, every thought was devoted to them. When they are gone, suddenly the void because vast and you don't even know what to think. The agony is physical because it hurts every part of your body. It's in your bones. Muscles. Everything. It feels like you've been stabbed in the heart over and over and over again and it's as if you are bleeding all over your life. How is there still a life when your reason for being is just gone in the blink of an eye? Every night you go to bed with the insurmountable loss and wake up realizing you lost your child all over again. The loss never ends. 

Agony. It's more than mental and more than physical. It's soul crushing. A piece of your soul is literally ripped away from you once they take their last breath. It doesn't matter if one day if you feel like you are healing, you will never ever be the same. I feel this to great magnitude and I know Carie must feel it so much more vastly having given birth to Kreed and raised him virtually alone for the first twelve years. He was life. He was our life, our world, our heart. He was this soul of the family. Agony. 
I still post his pictures and videos, but I have yet to watch a video. I know what's on them simply from memory, but I cannot rewatch them and know this will never be again. We will never see another hop, dimple smile, vocal stim, or feel his touch or tend to his needs. We imagined so many more years with Kreed and envisioned a life with him filled with so much joy, despite his physical pain. We always thought he was going to get better and better days were ahead. But they weren't. It was the end instead. This is why I tell people to never waste a moment. Never stop and think there is always tomorrow to do this. Another week, month or year. Because the truth is we don't know. Kreed forced us to live in the moment and I'm so grateful he did because in the end we did so much more with him as a result. 

Yet...that only magnifies the agony of not having another moment and having to live every moment for the rest of our lives without him. 

We are filled with agony. Pain. Sadness. Guilt. Wanting. Heartache. Anger. The loss of a special needs child is a special kind of agony as you are left so empty feeling every day. This is our grief, this is our daily weight of the world and our daily sadness. The continuation of a story with a tragic ending and you wonder how anything in this world will ever be okay again.