It’s Sunday night — three days before surgery and I can’t sleep, I feel like if I stay awake the surgery won’t come, the tears come in spontaneous convulsive bursts. If you believe in a God, pray to him, that’s what I’ve been doing (although I am also very upset with him). I can’t help but imagine what Wednesday is going to be like: that feeling when they all come into the room and take him away and go beyond the doors down what seems like just an excruciatingly long hallway that you are not allowed in—even the air smells different, it makes you dizzy, Jay and I call it hospital head. Sitting in some waiting room with a bunch of strangers that are going through their own horrific event and watching some clock that doesn’t ever seem to move. Knowing that they will be giving him anesthesia, but he’s too little to speak if he’s in pain, that he will be intubated and unable to breathe on his own, that his little eyes are taped shut, that there is a risk that the peritoneum could be hit and then…I’m not going to even continue. You’re just so helpless, through all of this, you are helpless—this disease is like a steamroller it comes every day and pounds you.
We will fight this, we will win. My son has experienced many miracles throughout his life already at the tender age of 8 months, may this just be another one on the road toward his kidney transplant. He is a fighter and a champion…he will come out of this better than he went in. Hug those you love and cherish each second that you are given. Life is precious. I will try to update you all when he is out and safe, but for now I have to get packing for us, Lulu and Gavs.