Sam and I went to Starbucks today to see are good friend Eileen. Eileen worked very hard for many hours trying to get Sam to say her name, and he used to say it. But he hasn't said anything in years apart from the occasional "Sushi" request!
Later this evening we went to CVS to pick up some meds. Eileen is the manager of a CVS store. Just outside the CVS, Sam stopped and said, "Eileen"!!!! Inside I was showing him a toy I thought he'd love, but he didn't seem too interested. I said, "Sam don't you want this?" and he said, "No." When we got home I was a bit encumbered with some packages and, of course, Sam. I stood at the back stairs and wondered outloud, "How are we going to manage this." Sam said, "Up."
Of course the really sad part is that he has these moments every now and then. And then they are gone again the next day. But it was really great while it lasted.
It confirms in my mind that he really does know what's going on outside his head, he just doesn't remember how to talk very often. One doctor told me that is very common among stroke victims. His theory was that Sam suffered a stroke just a few weeks before birth. Certainly, Sam has many things in common with people who have had a stroke in the same part of the brain that Sam has damage and treating Sam as though he was a stroke victim has been a very good plan. It's probably the best theory we have about what is wrong with Sam. This inability to speak even though he understands what is said to him is called aphasia. He doesn't understand everything, but he understands a lot. I never know how much, but it seems safest to assume he understands just about everything.
I wish we knew. I wish a lot of stuff.
I went to the Esperanza Community Services Annual Banquet last night. It was great, as usual. Amazing food, great art, saw a lot of people I really love and laughed a lot. Bought a quilt made by my friend Margaret. That's a real treasure!
But there is a real problem with going out in public. People say stuff and I don't know the correct response. For example, several people last night said that old line "I don't know how you do it. You are amazing." I don't know what I'm supposed to say to comments like that. I have tried many responses and rejected even more. Like I have never actually said, "Well, my parents are from the Planet Krypton." Last night, I came up with a new response. I said, "Well, he's just so darn cute. It really makes things easy." I haven't slept in two nights, but he's so cute that I don't mind... much... Well I do mind. A lot. But I don't know what else to do. Oh! Oh! There's a good response: "I'm just too stupified with exhaustion to think of an alternative to doing what I do."
Another response I've been thinking of using is to tell that story of the frog in the boiling pot. You know the one: If you put a frog in a pot of boiling water he jumps right out again. If you put him in a pot of cold water and gradually turn up the heat, he'll just swim around until he's cooked.
If someone hands you a kid with profound and multiple disabilities and tells you the whole litany of problems all in one go, you run for the hills. On the other hand, if someone gives you a beautiful baby boy who just has trouble swallowing, you learn to cope. Then they say, "well he seems to have one or two other problems." And you notice a few more as the weeks and months go by. Each time you say, "Well, that's just one more little thing." After awhile the doctor can say, "well, he seems to have spinal meningitis and he's probably going to die in the next few hours. Oh no. Our mistake, it's just an ear infection." That's a great strategy because you hardly notice the next 42 little new things wrong because you're so happy he made it through the spinal meningitis thing. After that, they keep on adding stuff gradually for 28 years! So when someone comes up to you and says, "Wow! You're swimming around in boiling water and you look just fine." You say, "Well, he just so darn cute."
I don't believe that story about the frog. Who would do such a thing to a poor frog anyway? Or why? Maybe I should go with the one about my parents being from Krypton.