One morning last week, I was in the bathroom getting ready and I sneezed. I heard David get upset and went to see why. I asked if it was because I sneezed. I continued to ask him questions via facilitated communication, using his hand to choose yes or no. What I found was that David thought sneezing was unique to him and didn't realize that everyone, including animals, sneeze. This was a huge realization for both of us.
Later that night, we talked about giving a signal for when David really needs suction. How can he show me when he needs it? Normally, I'd hear spit in there and automatically reach for the catheter. Now I realize that he doesn't always want or need suction. For now, we are using facilitated communication to find out what to do.
The next day we went on a walk. The sky was clear, but I thought I felt rain. It was just the suction machine leaking because a port had come open. After getting David in bed, I vowed to figure out how to address a faulty suction charger. Well, the chord was frayed. I had been positioning it against furniture so the energy could flow, but it just gave up. Before I had a chance to buy some electrical tape, it started making little sparks. I smelled the scent of electrical burn... No hope for this charger. Which makes me wonder, how much longer will David really need this thing?
|Bare wires on the suction machine charger.|
During an ABM session with Anat, I watched her wait for him to see if he needed to be suctioned. Surprisingly, he did not need it every time he got upset. He did not even need it every time he sounded goopy. That is not to say he doesn't always need it, but I am certainly more mindful of the whole situation.
I have been thinking about how deep the catheter goes. How have I not been thinking about this stuff? It became so routine that it was just habit to suction at the sound of saliva in David's trach. Now I wonder how much he has been thinking about it. I wonder if it is getting easier for him now. The good thing is, I am realizing these things, and just how subtle and complex it is.
During a movement lesson last week with Chris, one of the practitioners here, we noticed that David immediately responded to hearing the crinkling of the plastic catheter sheath. This past week I have realized that David feels so many emotions and has so many expectations regarding being suctioned as well as anticipating what is going to happen to the spit in is mouth. I can only begin to imagine the reactions and feelings that arise when he hears the loud unpleasant vibratory sound of that machine. I know I don't like it, but usually try not to think about it. For David, that is his daily reality.
There is the panic of not being able to breathe. Think about being at the dentist and you try to swallow when your mouth is open and full of foreign objects. On the other hand, if I let him go for too long, for instance when I am driving on the freeway, without suction, he can gag on his saliva or go into pure panic mode.
One evening I saw Maria, the healer, in the lobby of the Gerstle Park Inn. We were talking about all of this and what David has been experiencing. I explained how we are teetering between all the heavy psychology of suctioning, and the other hand, how simple. SIMPLE. it would be to just stop. How fast and scary and liberating would it be to just stop and see what happens? I think that is where David is right now. I think he is almost to a place of liberation, where he realizes that he can do it. My job is to let him, and to listen to him, as scary and difficult as it may be.
|Suction machine, your days are numbered!|