Thursday, February 25, 2010
Take It All
Yesterday Simon was feeling more than just a little punky. He's got another wicked chest cold and a terrible cough that makes him gag that much more than usual. It's a get-purple-in-the-face, make your eyes water kind of gag.
After I was sitting next to him post gag I said, "Simon, I am so sorry that this is happening" and then surprised myself by adding "and I would do it all for you if I could. All of it Simon, I would take all of it and do it all for you. I would take the coughing, I would take the medications, I would take all of the blood draws and Echos, and I would most certainly take the disease. I would take it in an instant and go through it so you didn't have to."
I was such an interesting road to go down. Without question I would do all those things. And in the same instant I had the thought, the kind of fucked up thought that only comes with our very fucked up situation "but all of this is what makes Simon who he is, and I love who he is. He may only be 25 pounds, -30 inches, and 22.5 months of Simon but every single pound, inch, and moment of those 22.5 months is just perfect and loved and held in awe in a way that I couldn't fathom 22.5 months ago."
I'd still take it all. In a heartbeat (there are those goddamn 'heart' phrases again)
We haven't really left the house since Tuesday morning except a sweet little jaunt down Lakeshore with Auntie Dre.
Simon's communication is taking off. We were lying on the bed and playing with the phone. I asked him if he wanted to call some one. Did he want to call MM or PopPop, G'paw or Grandma, Auntie Jen or uncle Frank?
Clear as day he said "Dee" which is his name for Auntie Dre. It was amazing that he had his own process just then and while I was spouting names, he came up with one that was completely his own.
Simon is having his own thoughts. It's one thing to be able to choose from two choices offered to you. It's another to come up with a choice that's completely your own.
I'm sure we're in trouble from now on.
Last night was rough. I think Simon and I got maybe two hours of sleep total. Jaime (bless her, jealous of her), when it's not her night to be 'on' can sleep through the coughing and crying.
In the wee hours his breathing changed and there was clearly some 'pulling' and wheezing going on as he tried to catch his breath.
I know things are worst in the early morning but my mind started racing down that road of "we need to go back to the Dr and maybe even the cardiologist today. I don't want to get admitted. I really don't. What if this is the time we get admitted and his heart is getting worse and we have to go back on IV meds. We've spent 15 blessed months out of the hospital. I don't want to go back. I don't want those days again. Kids from our listserve go in and out of the hospital all the time. It's been so amazing to not have to. I don't want to. I wonder if Carol would be on when we got admitted." Zip zoom vrrrrrooooooooooooooom.
It's amazing how fast that thinking goes. Ferrari's got nothing on me.
He's mellowed some in the last hour. Breathing calming down. He actually seems to be resting peacefully.
Tuesday morning he slept from 8am to 11am and then didn't nap in the afternoon. Rough day but I'll totally take it over the other option laid out above.
I'll take it.