The other day we had a great visit with Dr. LB and her precious (or is that precocious son) Sammy. It is always a treat when they come to visit because Lauren and Dale's children are smart and largely unaffected by Marty's disability. They may be but the don't show it, they are fearless around Marty and always hug her neck and give her a kiss and say stuff like, "Wow Marty, you're talking good today".
It reminds me of how difficult it was for me to be around really sick people before I became somewhat desensitized by caring for Marty. I just never knew how to be around really sick people. I was always afraid I would say something wrong or do something I wasn't supposed to do. I always started out with, "How are you doing", a testament to my southern breeding but a really stupid question to ask someone who is really sick.
What I never understood was the value of presence. The value of just being there, the importance of touch, the incredible benefit of just being a warm body in the room with someone who can't do what they would normally be doing. What I have learned is that you really don't have to say much, stay long, or bring flowers. What I have learned is you simply have to overcome your fears, your discomfort, and just be there, telling a familiar story or reading a magazine article. It's really not hard, you just have to do it. These are the very small gifts we can give.
I see some of Marty's old friends and acquaintances struggle with how to relate to her. Hey, I get it, it's very different, she is very different; she is not gregarious and out-going anymore, she's not going to carry the conversation, she's probably not going to make you laugh when you visit. She will know who you are, she will smile, she will know you are there. Marty is very much aware of what is going on around her and is certainly cognisant enough to know when friends are with her and offering their love and friendship. She is just like many of our family and friends who are chronically ill, they know more about what's happening around them than they communicate.
Anyway, I digress, because eight year old Samuel Baron, the young oracle of Cumberland St told me, he explained that Lyndon Baines Johnson and LadyBird Johnson had the same initials, I didn't know that. And then he used the word lallygag appropriately, regular eight year old prospective Texas Rangers just don't do that. But I knew he wasn't regular because he always, always makes my wife smile, and that's still the best part of my day.