Sam seems pretty stable for the moment in a low-functioning, crappy sort of way. He’s not getting any better, but he wasn’t any worse today than yesterday either. He didn’t poop his pants today, he had one, nice, hour-long nap, and we heard his infectious laugh at least once. He did however wake up at around 2am and didn’t go back to sleep (as far as I can remember).

We had a scheduled visit from the hospice nurse who gave me advice on getting him to sleep more at night (Benadryl), and did not observe him to be in any distress (my assessment as well). His heart rate is not alarmingly high (120), and neither are his respirations (30ish).

It’s the teenagers in the house that are in distress. Since school began I’ve watched the stress levels of Ben and Abby rise as the demands on them increase and their brother gets sicker. Abby exhibits stress as you might expect a 14-year-old girl to; she’s pissed. At everyone and everything. I know I can’t do anything right, that’s for sure. And sorry, Bubbe, but you bought the wrong ground turkey for taco night. And goddamn it, her math teacher didn’t explain how to do this type of problem. Ben is just sad and distracted and prone to crying.

I’m not sure how to help them. So I’m digging deep into my experiences as a behavioral counselor. When a child acts out in anger or sadness what’s one of the easiest, quickest, and simplest ways to reduce the undesirable behavior? Reduce the demands on the child. So I am starting there. My first thought is that Ben and Abby, who are both in band, do not need to be at all after school practices and events for band, and frankly, can’t homework wait? In fact, they’re both so bright, could it really hurt for them to go to school late on ocassion? I don’t know. I’m so confused. Ben’s a senior for Pete’s sake taking 5 AP courses. Can he miss AP Lit a couple of days a week? Am I helping him or hurting him? 10 years from now will it matter if he f-cked up the 1st semester of his senior year? Or will it matter that he spent time with his baby brother before he died?

  • Lisa
    Posted at 08:54h, 28 August

    Follow your <3 and your phenomenal momma instincts. <3 <3 <3 <3