It’s hard to believe three weeks ago Kai had a fever and we drove in to the hospital at midnight and we have been here ever since.
We have been living in this hospital for three weeks!
Kai and I have been sharing this bed for three weeks. Mark has been driving in and out of the city, traffic and tolls and parking and gas for three weeks. My dog has been at my uncles, my mom has not been to work, we have had meals on our doorstep, messages and prayers, and visitors everyday for three weeks. I have not been home or driven my car or turned on the Tv.
There have been countless ups and downs. Peaceful times and scary times and everything in between. I have had to make decisions and face things no parent should ever have to face. I have had to learn to let go while still holding tight and ALWAYS expect the unexpected.
There were two distinct nights that I really felt I was loosing my baby. When everything else in the world stopped. When I couldn’t breath from the thought of his least breath. But he is still here.
The first was the thursday we decided to stop treatment and the second was this past Thursday, thanksgiving. Since thanksgiving I feel it all the time. Every minute that passes i loose a little more of him. I sit here with my ear pressed against his chest listening for the next breath. Watching from across the room, waiting to see that tiny little rise in the blanket as he inhales. Sometimes it is fast and shallow and sometimes there are long pauses, but each time he exhales it feels like it could be the last time.
I imagine it will happen peacefully in the quiet of the night as we lay next to each other asleep with no one else around….i will be holding his hand with my face pressed against his cuddled under the covers just like every other night. I wont have the agony of watching for that next inhale. We will just fall asleep and our nurse will have to wake me to tell me he’s gone. I imagine it will happen this way…but know this is probably a fantasy.
There is nothing quiet or easy about watching him slip away no matter how slow or how fast or dramatic or peaceful, day or night. And I have certainly learned by now that whatever I try to prepare for, come to terms with or accept, Kai will find some way to mix it up, keep us on our toes and let us know that only he is in control of his destiny.
This is not about me or my choices or what I want for him. I can say I am thankful he is comfortable and that I feel like I made the right decisions but I don’t want any of this!
I am thankful he keeps reminding me that there is nothing more I could do. That no matter how many decisions I have been asked to make ultimately he made the decision for me. This is Kai’s life that I am living in and there is nothing I can do except be here. Hold him, watch him, support him, love him and let him be who he is. Just like every other mother in the world I want what’s best for him, but I do not control his life…or death.
Kai decided to sleep all day today. He did not open his eyes this morning even for a minute like he usually does. He didn’t wake before his bedtime meds either, he just slept. He had a few coughing fits where his eyes popped open, but he was not awake. Yesterday I could bug him enough to get him to wake but but he is very, very tired now and I have to just let him sleep, peacefully in the quiet night, just him and I, with his hand in mine and my face pressed up against his…just like every other night.