On the very hard days, I put my emotions to the side and make the best judgment call that I can. I gather the best facts that I can and do what has to be done. Those days are long and exhausting.
But on the quiet days, when very few procedures are being done and we're just "waiting", I let myself FEEL it all. It's then that I try to process the events. And it's all just so overwhelming.
As I reflect back on the tortures I've let him endure, the pain is unbearable. Knowing that *I* did this to him. He looks to me to protect him. And some days, I feel like I'm failing him. Like just to get one blood draw out of him, it takes the IV team (the best of the best who know and love him well) numerous sticks in "owie" places just to get anything. And even then, it's torture. 1 hour is nothing for a blood draw.
Then I get really protective of him emotionally. The last 2 days, he is "Over it!" He's very kind and friendly to Carmen, the cleaning lady. He's friendly to the 2 docs he sees daily. He's fine with some of the nurses, respiratory therapists and techs but others just kinda ram-rod the whole thing and he screams the whole time. Which makes them say, "You're OK." and other similar phrases. To which he has to prove he is NOT. He screams "I mad!!!" at them.
And as these people try to tell him to "get over it", I am biting my tongue. (You have no clue how hard that is some times!) I want to tell THEM to go through all he's gone through the past 2 plus weeks and see if they would be (mostly) friendly or if they'd be curled up in a ball in the corner!
The ones with compassion are Manny's best friend ... and then he doesn't give them grief. The ones who are trite with him, he makes them pay. Part of me is secretly proud of him for being smart enough to differentiate.
I try not to recount the number of pokes and procedures I've them do to him. I think that's the part that gets me the most. He continues to suffer.
I am pretty sure, however, that there is a LOT more joy than suffering in his life. If ever that balance tips the other way ... well, I'll have to figure out how to cope with that then. For now, I try to make that little boy smile and laugh as much as possible. I try to feed that hungry mind and protect his sensitive heart. I try to nurture his healing. And I THINK he understands that.
So as a "reward" for reading this "heavy" post, here's just a few shots of Manny ... all taken with his ipad. Enjoy!
|Wanted one with Mama (he leaned over to make our heads touch) awww|
|tuckered out after a hard day of playing|