Tuesday, July 7, 2015

Here But Not Here

The sound of my son's oxygen flowing through the mask. 
The whirl of machines. 
The blinking lights of the monitors. 
The constant read out of numbers. 
The hum of the computers. 
My son laying there immobilized and unable to comprehend what's happening. 

This is our life and has been for 19 days and counting. This is the life of a medically fragile teenager. He came in for a gall bladder surgery and has never recovered. Our sweet dimple boy has been gone to us now for over two weeks. The pain of missing who he was grips my soul and won't let go. While I know so many others have gone through this, to experience that pain is excruciating. Devastating. Life altering. 
We sit and wonder- will this be our life? Is he gone forever? Will he be replaced with a boy we don't recognize who can no longer do the basic functioning of life? Who doesn't recognize us half the time? Where is he? Where is our sweet boy who got the greatest of joys just going to Five Guys for French fries and loved to hike and kayak and jump on his trampoline. Where is he? Will he come back? Can the doctors find the answers? 

We keep vigil and wonder and hope and try to keep faith. But every day that passes without seeing our boy, another day of lost hope. How do you get that back? How do you keep going in the face of so much uncertainty. I don't have those answers. We just do. every day. We sit and keep vigil and keep trying and keep hoping. 
How do you mourn for a child who is still here but not "here." His body is here. He "looks" the same except for the confused look in his eyes. Where once they danced with light, now they show me a child that's not mine. He is, but he isn't the child I've known. Everything we've known about him is different. I'm no longer his favorite person, he no longer wants to cuddle and make happy sounds, and he no longer smiles with those dimples that go on for miles. Instead he pushes me away, he pinches me, he hits and kicks. He yells in a deep voice and wants nothin to do with love. He looks at me most of the time as if he doesn't recognize me. Everything is different. The sweet boy that loved us, loved life and loved learning has been replaced with a virtual stranger I know nothing about. 
We lost him once before when he was young. Kreed talked and had wonderful motor control. He was typical. Then over the course of a year he lost everything and he was silenced forever with his own voice. His voice was taken the first time, but his life force was taken this time. The essence of Kreed is missing. The amazing, sweet, sarcastic, playful Kreed is gone. We don't know if he will come back or when. We don't know anything, much less why he was taken. Just that he was. 

So now my tears fall as I look back on his vast pictures and videos. And learn to mourn for a boy lost again. We helped him find his voice again after ten years of searching, but can we find the essence of him again? Where is he?
All I can do is weep. Weep for him, for us, for our life vastly changing again. I watch him day after day and know I'm watching a stranger. And wonder if this is the stranger I'm going to have to get to know and figure out and begin a relationship with. Or this this a temporary stranger, place-holding for the real Kreed while he heals deep inside his brain? Only time will tell. Until then I search for the lost boy and mourn the loss of a child who isn't here but is.