Day 81 (Nov 14)

On Sundays there are rarely therapy sessions and today was no exception.  This means that I had lots of time to work with Tobias.  When I arrived this morning his breakfast had been delivered, but the nurse's aide wasn't able to get Tobias to eat much.  Tobias can't yet open his mouth so it takes a lot of coaxing and a little help to get him to start eating.  If you don't know the tricks to get him to open his mouth it's a hard sell.  I tried to get him to eat more of the breakfast and he did fairly well, but after 30 minutes he had only eaten a few spoonfuls of scrambled eggs and breakfast burrito (all pureed, of course).  He drank the container of orange juice and had lots of practice with small swallows.  I stopped partially because he was slowing down and having more difficulty swallowing, but also because his heart rate was over 110 and I wanted to reposition him.

I tried to reposition Tobias, but his heart rate didn't drop.  I ended up working on his feet like the massage therapist instructed and eventually his heart rate came down.  The aide told me earlier that Tobias was had answered verbally several of her questions, but he didn't talk with me at all in the morning.  A friend of mine was in town and came to visit so we put Tobias in his wheelchair and took him for a long walk.  The weather today was so warm that I had to take my jacket off and Tobias seemed to enjoy the time outside.

When we returned, Tobias' lunch was delivered and I got to feed him lunch.  He struggled with the pureed chicken enchilada.  It had a high refried bean content and for some reason he could swallow them easily.  Even if I fed him small portions.  I had to suction out his mouth twice to get rid of the mucky contents.  He didn't do well with eating lunch and I was disappointed given that he has been improving so much, but he still finished a container of juice and had several spoonfuls of each food.  I pinned my hopes on Tobias eating most of his supper.

In the meantime, my friend had left and the nurse's aide and I gave Tobias a well deserved shower.  It went smoothly and I surprised myself at how easy it was to shower Tobias today in comparison to the the first shower that Katja and I gave him.  It's a learned skill apparently.  We put Tobias back into bed and I was excited to note that his supper arrived at the same time.  My excitement was short-lived, however, Tobias didn't eat as well as I was hoping.  He drifted away frequently and I had a hard time getting him to stay focused.  This is another impact from his injury.  The doctor told us that the injury was in an area of his brain that can affect his motivation or ability to concentrate.  Sometimes Tobias is able to stay focused for several minutes at a time and sometimes he can't fix his concentration.  Tonight at supper Tobias wasn't able to stay focused, but at some of the mealtimes, he has been much better at eating.

It's deflating sometimes when Tobias is distant.  Sometimes he can communicate, but when he can't he will look calmly into my eyes like I'm speaking a language that he doesn't understand, but he doesn't want to be rude and act like he can't follow.  Sometimes he gathers himself, swallows hard, starts moving his jaw like he's a rabbit nibbling on a carrot and then he moves his mouth to speak several words on end.  The problem is that he makes no noise and his mouth movements are too abbreviated to decipher what he is saying.  These are low points because they highlight the severity of his injury.  I console myself by looking back a few weeks and noting the progress he is making, but at the time it seems unreasonable that we can't understand his attempts to communicate or that he isn't more consistent in his speaking.  I'm doing fine and feel ready to accept whatever outcome waits for us when Tobias' journey levels off, but it doesn't mean that I'm happy with it.  I wish that Tobias didn't have this tragedy to work through and I wish that Katja and I didn't have to watch him go through it.  I'm grateful that we are able to support him and provide care.  This means a tremendous amount to me and would rob me of purpose if it wasn't the case.  I think that I'm doing as well as I am because I don't try to make sense of it.  I don't believe that there is any sense to be made and trying to do so would lead to resentment and grievance, neither of which is helpful to Tobias or to us.  I'm still coming to terms with what happened to Tobias, but it helps to invest myself in his well being.  Busying myself with his care and recovery helps to keep me positive and moving forward.  It simplifies the world and my place in it.

Tobias used to love watching the TV show "Psych".  Back in Germany during high school, we could hear him laughing out loud when he watched old episodes.  Tobias was open-eyed in bed tonight and I wanted to treat him to a special surprise so I bought an episode of Psych and played it on the TV in Tobias' room.  I'm not sure what I expected to see in his reaction, but I was hoping for a smile or him speaking and saying "thank you".  He rewarded my kind intentions by closing his eyes and going to sleep.

Hope over fear.