Craig to Diane: Did I have to wear that hat at some point to get my license to use TPN?
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It’s another gloomy day in Denver. The cold weather has us locked in. We’re sitting in Craig’s darkened room and I’m writing as Emily and Erin type on their computers. Diane is taking a nap on Craig’s bed as he rests peacefully on his hospital bed beside her. I asked him earlier how he was doing. Rather than answer ‘okay,’ he raised his hand in a side-to-side motion, indicating that he’s feeling only so-so. (Mom would do the same when talking became too tiring.) Craig’s exhausted and his eyes show it; they seem less bright, almost sad. Gone is the earnestness he had before. He hasn’t been sleeping well, unfortunately, which is contributing to his fatigue. He’s been waking up several times at night from vomiting, thrush, or back pain. When he stirs, the sisters and Emily are there to “answer the call” with a bucket, a cold rag, and a hand on the shoulder. His sleepless nights are contributing to more restful days. And he needs it. His heart rate is now 127, meaning his heart is pumping as if he’s doing an aerobic workout. As if in survival mode, his body is using his remaining energy to keep his heart going; hence, the fatigue. Though it’s been a battle getting him to listen to his body and take a break, rest is absolutely needed.
With the weather gloomy, and his heart rate up, we’re scrambling for indoor activities. We’ve already ticked off the aquarium, the botanical gardens, and the planetarium. Short of taking the ol’ guy to the zoo (too cold), we’re running out of ideas. He’s not interested in watching movies or listening to books on tape or even playing his beloved Uno. (Mom wasn’t interested in movies towards the end of her process either. Perhaps movies require too much energy to pay attention/stay awake. Or they're just boring. Fair enough. Hollywood hasn't really been kicking 'em out these days.) With every suggestion, he simply shrugs his shoulders and says “no.”
Being idle has never worked for Craig. If he’s not swimming or weight lifting or seeing the sights, he’s reading Heidegger or writing in his journal. For Craig, sitting around is worse than listening to David Haselhoff (I find it ironic that Haselhoff is hosting America’s Got Talent…pfff…What, was John Tesh not available?). Doing "nothing" -- whatever happened to family bonding?? -- makes him antsy and irritable. I think he gets his restlessness from Dad. Thankfully, he’s been sleeping more, which helps keep the restlessness at bay. Still, the weather has our days blending together; he considers each non-active day a blah experience, which doesn’t register so high on the warm and fuzzy barometer. Though we’re in lock down, we’re doing our best to keep him comfortable. It’s clear he wants us near; he wants to feel involved. Sometimes he’ll join in on our conversation, but mostly he listens, or sleeps. It seems our presence is comfort enough.
He’s still sleeping. Once he’s up, we’ll run through a new list of possible activities. Like yesterday, I have a feeling he’ll want to stay in. Great is the art of distraction, but greater is the art of simply being. Dad would disagree. ;) -- J
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