03 February 2012

Too many small things going on. I get stuck feeling like I have to write about all of it or none of it. Just silly and a bit overwhelmed.

Complaint: I am having playing video on my computer. Netflix comes in fine (I don’t know if that is even related) but youtube and other videos don’t work at all. I probably changed something in my preferences -- I was trying to turn on cookies to satisfy a service I wanted to use. I have no idea who to fix this. Anyone? Save me?

I had a session with Ellen by phone yesterday. She told me that Julia was doing well but she was having nightmares. Not surprisingly, I’ve noticed that she had been crying out in her sleep. She may have had nightmares in the past but there was little to no manifestation of them. During the last few weeks, she has cried or called out in her sleep at least once a week and on occasion more than that. Once she told me that she was afraid, but quieted and went back to deep sleep with my reassurance. Other times she doesn’t wake up, I will snuggle her closer to me and she is fine. A few times she has put her arm over me, something that I imagined was a long time throwback to China days. I’ve taken it for granted that Julia was processing in her sleep and Ellen said the same.

Marilyn and I was poised to work on the new workbook that I've written about Julia's early life, as recounted by a bunch of dinosaurs. Of course. The dinosaur characters are nearly the only light hearted part. I can post it on a page on the blog if anyone is interested. The manuscript needs a bit of work. Editing. What else? And I will tweak it as we work. I am sure some of it will be hard going.

Ellen’s words for me was that I am exhausted. I didn’t consider myself exhausted but I haven’t slept through the night for a long time. It is Julia. It is just me. I have not had a problem with my lack of sleep although I do not feel like doing much during the day and duck out of physical activity whenever I can. I forgot about a “trick”/method that Marilyn taught me months ago. Used it last night and went back to sleep each time I woke up.

I went to a Waisman Town Hall meeting during which members of the Waisman Center Brain Imaging Core presented an introduction to the core and the tests and machines used to examine the brain and its connections. Pictures from scans done by MRI, PET, and microPET, some ongoing research, and the capabilities and services offered through the core. Where I can usually understand around a fifth to a third of what is talked about at Waisman, my percentage dropped way down. However, the research they highlighted was some of the same research talked about at the Day with the Experts on Autism that I went to last week, so I had another explanation of some of that research which helped. Also, even not understanding most of what was said, I listened intently, amazed by this science of the brain. I am dying to move preliminary research to practice, and theories to application. There are researchers who can see that an autistic brain is different and how it is different, and I want to shout out, SO WHAT CAN WE DO ABOUT IT? I know, I know. Every experiment needs duplication and exposure to the scientific community, and more, and small pieces of answers cannot automatically be put together to form big conclusions. But once again, patience is hard won.

I have replaced answering Julia’s insistent and constant questioning of my feelings -- are you angry? are you sad? are you crying? are you happy? -- with asking her to look at my face and figure it out. She turned a deaf ear to that direction for a few days. This morning I saw a small change. She asked. I replied. She looked at my face and then hugged my back to make me feel better.

Julia is working on counting backwards by 10’s from 100 in school. She volunteered to demonstrate it for me in the car yesterday. She also did it, not perfectly, not completely willingly, for Marilyn. I can watch her thinking as she does it. It is still very hard for her. Slowly. Slowly. Maybe I am spending too much time looking at brain imaging, I imagine parts of her brain "lighting" up and being used for numbers for the first time. Each fact is hard won and needs to be reinforced many, many times, but are we forging new connections? Are those synapses firing?

Listening to a book on tape about a heart transplant -- Irreplaceable, by Steven Lovely. Couldn’t listen to something like that last year, but I can now. It is more from the perspective of the donor’s remaining family with a description of the waiting for the donor to be declared brain dead that gave me the other side of our time waiting for the heart to arrived at the hospital. Yes, I relived the pre-dawn phone call, the knowing at the instant of the ring who was on the phone, the calling Cathy to take care of Julia, the call to Cheshire to come home, the rush that was anticipated for months, the drive to the hospital, David insisting on driving -- his last driving for months -- , the picture that I snapped as we walked down a hospital hall, the getting ready, my stepping out of the room while he changed -- so silly that --, visits by the heart team and social services, and the waiting for word that the heart was out of the body, was in transport, was in the hospital. And David being taken into the operating theater for preparation. The hope, the anticipation, the close to high spirits that we shared. Finally, finally, we were beginning the process that was going to give David a new lease on life. Give us another 20 years together. Irreplaceable describes the call, the scene around the death bed, the decision to turns off the respirator, the decision to allow a organ harvest and donation. And I appreciate the other side of the story in a grim, rational way. I should know the entire story.

I am sure I’ve written about David’s donor’s family getting in touch, and my waiting for a long time to write back, and the calls from the organ procurement organization. It was months ago now. David’s donor was from another state and so multiple organizations were involved. Last I heard, both organizations, Wisconsin’s and the donor’s state, agreed to pass along my contact information for direct contact. But I’ve received no word from the donor family. A few months ago, I assumed that it meant that they did not want contact, but who knows when and if they have my letter and information. And even if they have it all, do they want contact with me? I understand why not. David was the person who had the heart, the part of their son and grandson that was still alive. I, on the other hand, am just another grieving person. I am sure they have plenty of grievers in their own family. And although, there might be some connection with David, the connection thins with me, with David only living four months with this boy’s heart. I have no strong feelings about this situation. Do I want to take on a bit of their grief which I surely will if they get in touch? Do I need to relive the days of transplant, early recovery, and death, which again, I am sure that I will have to? But aren’t they what is left? Aren't we all what is left? Is contact part of our responsibility to our dead, to our community?

I don’t know.

The weather continues mild, and Julia is sure we have missed winter. Funny. Yes, it does feel that way. I am so grateful. There is still February and March.

I am trying to read fiction. I have been a dismal failure at it for months and months. It is time! I found some junky science fiction. Maybe it will be good. And I will sit down with it as if it is a textbook and read. Maybe I need a noise subway with light flickering on and off, or a cafe where no one else speaks my language, or a time of stealing time from “more” important work. I sigh. I need to sit down and learn to enjoy reading again.

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