inveniam viam

Christopher died this morning. I took this picture of him and his mom Linda last month, on his birthday. When he was an infant, doctors told his mom that it was unlikely he'd live to ten years or twelve. He died a bit past his 32nd birthday.

He was very loved by many. And by me.

So, I've worked 115 hours since July 28. I won't be doing that again any time soon. And I don't think I've ever mentioned it but I have an interesting canary in the coal mine in my head: after my neurological incident in '09, whenever I do too much, get too tired, don't get enough sleep -- my ears buzz louder than they usually do. Either that or I don't have the spoons to ignore it like I usually do.

So, yeah, loud ear buzzing today.

I have the next four days off. Today I get the kids up and showered and off to summer school (done), take Christopher into the clinic for some pre-breakfast blood work for his doctor to review before his physical next week (waiting for him to wake up), go to my pre-surgery appointment at 2pm, and then drive Luke up to Gaylord, about a three hours north, where his friend Dusty with pick him up and take him to Negaunee.

Tomorrow I only have a home visit with Chris' social worker here, right before lunch, and dinner with Ed, my friend/resident at the nursing home.

Wednesday and Thursday I have nothing planned! Well, there's a kid's concert on Wednesday at the library that I'll take Chris to, and I *really* need to get out to the garden and weed.

I have four more work weeks until my surgery on August 6.

"Dude, you are such a dick!"

I was coming upstairs and heard Jake, one of Chris' aides say that, and I had to smile. Because Chris was giggling and I could imagine what was going on. Some people would say that calling Chris a dick is abuse, but the thing about Jake is that he treats Chris as just one of the guys, and Chris gets that. He loves Jake.

I heard Chris spit -- again, I assumed. Jake's voice took on an edge of annoyance, "No, seriously Chris. That's uncool. Stop it."

I have to admit that I was standing on the stairs, eavesdropping. Chris made a low hooting sound, and Jake said, "Yeah, ok. Come on, wanna go for a drive?"

I continued upstairs, "Hey, how's it going guys?"

At the beginning of December, Chris started getting sick. He had bad diarrhea, stopped eating and started loosing weight. I took him into his family physician, and they couldn't find anything -- no infection or virus or such. Finally, I took him into the emergency room. They admitted him, gave him a feeding tube and he was there for five days while he stabilized.

In the hospital, he wasn't having any diarrhea and he was handling the tube feeding ok, so he was discharged. He came home with a tube feeding pump and we had him on that for about two weeks, until he started signing for "eat" and started first with one meal a day, then two, and now he's eating three meals most days. He's still having intermittent diarrhea and no one really knows why.

His mom says that it's probably just depression. "He was like this when his dad and I split up, and when we had to move."

Chris has 12 hrs a day for an aide to watch over him. Right now, I have Kayla, my daughter-in-law, and Jake, a friend of Sam's who's become a part of the family. They're paid $12/hr by the State, and Chris adds another $3/hr from his SSI check. This uses all of his check, but we also get chore services money of about $700/mo, and he has food stamps and gets his incontinence supplies from Medicare.

Even after six months, we're still all getting used to having Chris with us. Mostly, it's a lot like have a perpetual toddler -- he can't be left alone, he needs help with feeding, and he's incontinent.

Last month, the day he got out of the hospital, the court awarded me guardianship. On February 15th, Chris will turn 30; I turn 57 on Jan 14. The only thing that I have to worry about at this point is that my health stays good so that I can keep him in my home. That's the plan.


Chris, Jan 4 2018