Agony

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. 

Agony. 

Pieces of You

We clean pieces of you...from the house, from the car, your room, your therapy room. The fridge. The pantry. I vacuumed up your chips today from the backseat of the car. It just made me stop and think that I'm cleaning pieces of you. You had those chips. They touched your hands. Your lips. Your body. As I clean I know I'm losing more pieces of you. 

I don't want to forget. I don't want to lose more pieces of you. Though I know our life must go on, it's so hard to continually say goodbye. To lose more pieces of our life together. 

One day we will have to pack up your room and let it become something else. Again, pieces of you gone. Your smell. The indent of your body in your bed. Your clothes. TV. Videos. Pillows with strands of your hair. It's feels like losing these pieces of you will make me forget. I know it's not true, but it doesn't change the feelings of it. 

We had to lose you and now over a month later we continue to find you in everything and we must say goodbye again, over and over. I know one day there won't be as many pieces of you and the tears will continue to fall. We will never forget. The most important pieces of you are inside our heart and souls. 

Pieces of you. Pieces of us. Will always be together in some way. But for now, I mourn the pieces of you we must continue to let go of.

One Month

One month. 

It's been one month since your heart beat last. 

It's been one month since we held you in our arms. 

One month since we heard your voice. 

One month since we heard your whoops of joy. 

One month since we've seen you be pulled around on your scooter. 

One month since we had hoped you would get better and come home with us. 

One month since we had to watch you gasp for your last breath. 

One month since one nightmare ended and another began. 

One month since we began a life we never wanted to live. 

One month ago we had to say goodbye to our whole world. Twenty four hours a day, seven days a week we cared for Kreed. We took care of his medical needs, food, sleep, activities- everything. One month ago we said goodbye to our adventure buddy, our partner in crime and the epic life we lived. No one should ever EVER have to go through this kind of pain. We go through our days, and so many of them don't feel like our days. Like we are having a day when he's just with Bill giving us some respite. Every time I remember this is forever, the tears fall. I still don't even know what to do. I had the next 50 years planned with him at least, to teach, experience life and give him one hell of a life. That life wasn't supposed to end at 18. I didn't know last summer would be his last summer. Or Christmas. Or birthday. Or meal (which was Five Guys). Or swing. Or jump on the trampoline. Or night time at home with us. 

In the coming weeks I will blog more about what happened so everyone can understand. We are still trying to understand in some ways. When Kreed entered the Children's Hospital Colorado he was already dying. We just didn't know it. There was nothing the hospital could have done or didn't do to help him. It was too late by the time Kreed and I first walked in their ER. Instead, Kreed was given one hell of a three months surrounded by staff who adored him and were willing to do whatever was needed to make him happy. Kreed loved people. He loved having fun. He loved being loved. And I thank Children's for providing that love to Kreed in his final three months. 

Nothing will ever replace the emptiness we feel inside. Kreed's loss was soul crushing. He was our soul child. I don't know how you recover from that. I don't think you do. I think you learn to live with the emptiness and the hole. And not a day will ever go by that I won't think of him or miss him. 

It's been one month since we told him we loved him and he heard us. 

One month feels like too long to be without him. I don't want to know what forever feels like.