(the above photo of Uma and my mom--Sherry--was taken on Mother's Day, 2006)
I JUST GOT THIS UPDATE FROM MY MOM:
How wonderful it is to be able to visit Uma at home instead of in the hospital. I had my first opportunity to hang out with her at home yesterday, and it was very special. Colleen was there when I arrived, and John was in his home music studio working. Colleen left and Uma and I got cozy in the bed to watch a DVD that I had brought—“Ever After.” I was in the mood for a fairy tale, and Uma seemed to like the idea, too. So we watched the movie while John worked in the next room, and we took turns dozing since the plot was too familiar to keep us awake when we were both a little sleepy. As we watched, Uma had her right arm in the removable cast that she wears as much as possible as part of her therapy. It can get very uncomfortable for her, so it was great that she was able to keep it on for several hours.
After the movie, we talked—mostly about movies and TV shows, but also about other things. At one point, we talked about “Grey’s Anatomy,” and I asked her if she was going to watch the new episode that was on last night. She started to explain and couldn’t get the words out and appeared very frustrated. John came in and started asking her questions. He has a way of helping her express herself that no one else can match. We figured out that she really wanted to watch Grey’s, but also really didn’t because she had missed several episodes and didn’t want to watch them out of order. At one point in our conversation, she said, “I want to watch…” She often gets stuck after “I want” so it was good to see her forming a sentence.
Another time when I was trying to get her to repeat a sentence, John came in and counted with her to three and then she said it perfectly. The counting gives her time to prepare, and then she does much better. She is best able to form words and sentences when she watches the lips of the person she is talking to. At one point, she said the word “scenario.” I wasn’t sure what she was trying to say, but it’s clear that she’s working hard at it and the words are coming to her. They might not be the right words for what she is trying to say, but it is a start.
In response a look of frustration from Uma, John explained to her that he and everyone else can see that she is an intelligent woman and the same person she’s always been—that she just needs to work at being able to once again express herself through words. The way he explains this is so loving, so patient, yet also gently demanding. He stops her when she is frustrated and looks into her eyes and offers reassurance that he understands her plight and will be there to help her through—but also reminds her that she has to work at it no matter how frustrated she gets.
Toward the end of my visit, Uma’s friend, Lauren, arrived with a tray of cupcakes. I said goodbye to Uma and left feeling rested and grateful for the time I had spent with her. Uma will resume serious therapy next week, and she is getting some much-needed down time during her first week at home. John says they are sleeping well without all the interruptions and noises that invaded their privacy in the hospital. John is trying to get back to work while tending to all of Uma’s needs and making arrangements for her therapy. I worry about him because the role of primary caregiver is so exhausting, even when you get back as much love as Uma gives. There is also the tremendous sense of responsibility for so many things, from making sure she eats well and gets the quality of care she needs to making sure the bills get paid. We need to help John keep his strength up so he can help Uma keep her strength up, because no one does that better than John. I think he will ask for help, but probably not as much as he should. He needs quiet time alone with Uma, and he needs time to be away from her to do his work and time to be away and restore himself by doing whatever helps him to re-energize. I say this to direct your prayers and positive thoughts toward the support that John and Uma need to get through this healing process so that she can be fully recuperated in every way. We have already seen what can be accomplished when so many people pull together in love and hope—Uma has come so far with that power behind her, and I know she will keep making progress every day because she is surrounded by so much love and support and is very determined to reclaim her independence.