I wrote this on Monday while sitting with Charlie.
I've talked about Charlie before here and you can see him here. I have been begging Angel (Charlie's mom) to let me do something to help. I feel helpless. Charlie is about 3 weeks younger than my Joey. He is still in the hospital, he is still giving all specialists a run for their money.
Ang and I have been friends since high school, we were roommates on a study abroad, we see each other maybe once a year, but she is the friend that you can see that often and still love and adore and talk like we have just spoken yesterday, not a year ago. You wish she was your sister or next door neighbor.
Anyway, she and her fam are moving into their new house today and they all need to be there to get it done so I get to sit with Charlie. Joey, who does not take a bottle willingly (or apparently at all), will get me back in a couple of hours.
I guess Charlie has been sleeping all day, but has been a bit restless since I got here. I would like to think it is because he is excited to see me, who knows. Let me tell you how I feel:
- he has been having a "storm" for the last 50 minutes or so. His BP goes up, he sweats, he can't seem to calm down. He is awake and breathing heavily, making sad faces, looks so uncomfortable. He has a feeding tube, monitors, oxygen - not so comfortable.
I said to the nurse, "I want to hold him, somehow comfort him." She said I could. So I did - totally supervised, of course. She said that he would be uncomfortable with me holding him or in his bed. I guess I was thinking that I would have the magic touch. That he would relax his rigid body when he was placed in my arms, that his heart rate would miraculously calm. Nope. Instead, he kept on with the "storm", stubborn baby.
I tried singing - nope, instead I cried. Helpless. So, I hummed and cried, hoping that he would feel my love even though he can't hear me.
I finally put him back in bed (totally supervised) and he is still storming. The nurse who has been here all day just left. So helpless. I worry that I am bothering the nurses to often. He has needed to have his sinuses suctioned out while I am here, had two diaper changes (tube food makes stinky poop, who knew?) and his last nurse said, "He hasn't had any of the ____ meds all day, maybe he needs them now." She is off, so I don't know if the other nurse knows that is what she is thinking. I just went out to see if he was going to get them, we'll see. The new nurse is just as great as the last. They have a great staff here.
I don't know how Rob and Ang are doing this. I wish I could do Charlie justice by writing some well-described, eloquent, verbascular post - really letting you all know how I feel, how it feels to be here, but I can't. I don't know what it is like to be his parents, I am certain it is a living nightmare. I'm in awe of their strength.
This is Charlie Cooper with his alter-ego Super Cooper, the boy who is fighting hard to get better. I saw this doll a while ago and luckily when I went back they had it still. Britt named him Super Cooper which is absolutely perfect. You can't see it, but Super Cooper has a cape and a hero suit on.
Charlie Cooper is quite inspirational. The feeling in this room is somehow peaceful and full of life, even when he isn't peaceful. I feel he is going to do great things, we just don't know in what capacity.
Rob and Ang, thanks for letting me help. Anytime you need me.