Did I mention that this is exhausting?

Austin has been extremely feisty today and feisty is a bit of a euphemism. He is full of anger and bluster at being “hooked up” to his IV and insists over and over at the highest volumes that we unhook him.

Last night, when he’d finished his chemo and was about to be switched back to his fluids, the nurse granted permission for him to “run a lap” unhooked. Of course, as soon as Austin had the promise of one lap, he insisted upon two and then requested “five hundred,” which is his go-to number for everything (as in “500 more minutes,” “500 more days” and “500 more cookies”). His lap, which is literally a lap from our room down the hall and around the nurse’s station, was a joy to watch. As was the lap after that and the one after that. His running was interspersed with  skipping and jumping, his hands held high in an Olympic-worthy victory stance, prompting several of us bystanders to say (with due irony), “Wow, can I have some of what he’s having?”

But all good things must come to an end and I eventually had to scoop him up and return him to his room and his dreaded IV pole. This child did not give up his freedom without a fight. A kicking, screaming, hair-pulling fight. He then tried to unscrew his PICC line from the IV himself, not exactly the safest thing for a three-year old to do.

He is just mad, sick and tired of being restrained, tied down, shackled to this damn disease. He feels good and he wants to run free, not be forced to wait for Mommy to maneuver the pole over the door jamb or need to untwist three times in order to reach his desired toy.

The scene was replayed today, both with me and with Mark. Again involving kicking and screaming and, this time, biting. Neither of us begrudge him his anger. He should be angry. This sucks, what’s happening to him. And yet we continue to hold him down and calm and quiet and soothe so we can stick him with another needle or pump his body full of another poison.

We are all sick of being shackled to this disease.

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