30 September 2011

Copying blog entries into a Pages file, I find this comment from a dear friend:

"As J[.] makes all of these developmental leaps lately I give pause and think of your Julia. Not one time have I noted a new skill that I have not thought of Julia. Not one time have I given thanks for Jaden's development that I haven't cursed what happened to Julia in China. Not once. It makes me so damn mad! "

I sobbed when I read it. And I am crying again as I write this. I am in awe of the friends, known very well, known only by their comments, or wholly unknown, who read my writing, support me, and send love. For a few of you, I know that you are reading even if you never comment because you are the only people who I know from where you are from. And then there are those of you who comment or call. Thank you. How inadequate those two words! Thank you.

And Traci, thanks for sitting next to me so many mornings. Thanks for your family, your support, your friendship. Who knew that we'd be on this journey when we were sitting the hallway of our hotel in China eating pizza?

Under certain circumstances, you may need to take steps to counteract someone else's wrongdoing, but it's better to do so without anger. That will be more effective, because when your mind is overwhelmed by a disturbing emotion like anger, the action you take may not be appropriate.” ~~ Posted on the Dalia Lama’s facebook page this morning.

I can’t get over thinking it is just a kick to get a facebook post from the Dalia Lama. Well, me and about 2 million other people, with about 15,000 “liking” the post. I don’t “like” it simply because I don’t want to get another thousand notifications that others like it, but he strikes a good tone for writing this morning. Anger. Anger and fear was all I was about yesterday.

In the afternoon and early evening, I wanted to get back to what I was writing about yesterday, but the day got in the way, as did strong emotions and going food shopping.

By the time I got to Marilyn’s for my own session yesterday at noon, I had done a fair bit of self-talking -- otherwise known as talking to myself, but self-talking sounds far more therapeutic -- and had a good cry. I began to see where I was coming from and how Julia’s behavior set off all my buttons and alarms.

First off, there was a lot about my reactions and feelings that just had to do with me. Apart from Julia and our relationship. It was me. And those needed to be understood and processed and then gotten out of the way. Primary among my baggage was my feelings of loss of control. I found myself crying about the fact that I could not save David and I could not save my niece, Jennifer.

I know I could not save David. Really, I have no rational guilt about that one. It was genetics, not lifestyle. Nature, not nurture. As I catalogue and read my blog, now back as far as January 2010, and during the sorting of his and our papers, I can point to circumstances where we may have made other life choices, but I don’t think that any of those choices, save one, would have changed the day on which David died. The only different choice we could have made came in November of 2009 when David refused a heart that may have been compromised. It was the first offer of a heart and a hard decision to make. Maybe it would have been a better match. Maybe because of some environmental factors - the cold especially -- his behavior after transplant might have been more circumspect, he may have been more careful with himself and not gotten the infection that he wound up with. But then again, that heart may have been compromised and left him with complicating diseases or conditions, and who knows what other bacteria were lurking in cozy winter places to attack. One possibility of a wrong decision, and it is only a possibility, in 55 years of living does not make for guilt.

After that rational explanation, the truth was that yesterday, there was no rational. I cried because I had no control over David’s death. I was deathly afraid that i had no control over Julia’s hurting herself.

Which brings me to Jennifer. She died at 19, at her own hands. She was a cutter, hospitalized at least twice for hurting herself. Looking at Julia’s hurt body -- with scabs all picked off -- I was thrown back to the cuts on Jennifer that I never saw. I did not even take the mortician’s offer of viewing her body before burial. (She killed herself with pills, not cuts.) It was a closed casket and I was more comfortable leaving it that way, although that was a mistake from what I see now. My imagining of a suicide’s body is probably far more gruesome than the reality. I was texting with Cheshire yesterday and when I mentioned Jennifer, she was a bit aghast at the comparison. She said that Julia was not hurting herself. And that was true, but Julia did not/ does not stop her picking when it hurts. And I am not talking about picking one scab. No, 42 scabs. (More about that later).

And then, there is the giving up on Julia, even for a morning. I realized that I was so hard on myself related to that because of my family of origin. My mother gave up on me very early and did not find her way back. Sure, she would say that it was my behavior that caused her to give up, but hell, she was the mother, I, the child. Blah, blah, you know where that goes. Coloring the mother issue is my continuing reluctance for the estate work -- I can neither forget about or really process the loss of my mother because I still get mail for her and take care of her stuff. I don’t mean to blame her for the leaky oil tank in her driveway -- LOL! I’ve blamed for for much in my life but I cannot believe that even she would die with such a legacy. This is my issue. I know.

So, by the time I got to Marilyn’s, I was able to separate my rage and despondency over my issues from what relates to Julia. Yes, it is a great loss of control and having a disabled child is the mega-teacher of control issues. When the student is ready . . . really, was a ready for this one? God, you do have a LOT of trust in me. I found myself saying to Marilyn how much I try to squeeze Julia into any part of the normal box that I can. She looks like a normal kid. She has a lovely body -- a NORMAL body! And I am so very scared that she will lose this -- the normal part. She stoops when she walks at times like older people with cognitive impairments. She shuffles a bit when she is not paying attention. Again, like older retarded people. She uses a big voice and big gestures when they are not appropriate. And all the other inappropriate things she does. I try to instruct, curb, change her to make her fit in as best as she can. I try to control her. And probably, I try to control far more than is necessary to control. Julia is who she is, and what she is. My parents tried to do the same to me -- and told me not to talk. That made me look normal. Indeed it did, and cost me my twenties on a shrink’s couch.

And I cannot control what Julia does to her body. In reality, if she becomes a cutter, she does. I can work towards healing her body, and ultimately her spirit, but I must acknowledge that she may be wounded far more deeply and far more extensively than my band of therapists and I can ever change. Like David’s “spectacular infection” that weakened his body and ultimately that new heart so much that he died, Julia may have a spectacular wound that can never healed. Even writing this is hard -- the strength to live it is unimaginable at this moment of writing. No, this doesn’t mean that I give up, or that I retreat from her in any way, but it is a possibility and could be a reality. Julia could grow up to look and act like a retarded adult, and she could grow up so wounded by her early life experience that she is never able to control her desire to hurt herself. And I have to let go of trying to control these outcomes. For all I can do, she will be who she is. Certainly, this is true about Cheshire. For all we did to mould and shape her, she is, on a very essential level, the same person she was as a very young child. For all the medication, meditation, strategies, practices, therapies, and special programs I can do for and with Julia, she is still herself, and only she will be able to heal herself. I did not have to work this hard to parent the essential Cheshire. It was all right there. I only had to step out of her way and love her. I know that I need to do more with Julia to get to the essential child, but like my task with Cheshire -- getting out of her way and loving her -- the task with Julia is the same. And this is a very hard task.

Coincidentally, although I am coming around to the idea that there are no coincidences, last weekend, I listened to a Love and Logic tape. I read some Love and Logic material when Julia was home for about a year. I liked it but did not find it all that useful in dealing with Julia who was so irrational and out of control. I could not work it down to her level as I was handling tantrums and melt downs. Could have been my failing, but be that as it may. But after last week’s listening, I can see it as a tool for letting go of imagined control I think that I should have and replacing control with responsibility, eventually the child’s responsibility for herself.

And so, Marilyn, saw some of the up side of my terrible morning: first, Julia responded to my terrible behavior. She was more compliant and tried very hard to follow my directions and to please me. It may be time for Love and Logic strategies. Second, Julia can be responsible for her behavior. Under dire circumstances, yes, but responsibly none the less. Third, I have a whole bunch of control issues that need working on. My control issues about others people in my life can be separated from my control issues with Julia. Fourth, we are assuming, and this was a tough stretch on my part at first, that some of Julia’s picking is very physical in nature. As the scabs heal, they itch and her attention is called to those spots. Assuming, at least for the moment, that some of this issue is really physical in nature, I have a call into our doctor to get some stronger anti-itch cream. Fifth, we had a good session with Marilyn. Julia was in my arms for most of it, cradled like a baby, as we talked about my anger and sadness and her reactions to it. And then about China a bit.

It always comes back to China.

Last night, after Julia’s shower, I put 42 bandaids on her active scabs. Some bandaids covered more than one scab. I wrote the number on our bathroom mirror. I told Julia that 42 scabs were too many. I don’t know if we are going towards putting bandaids on every night or something else but she is responsible to getting the number down. I’ll help, but she will have to do it. This morning we were back to following Julia’s morning map, strong sitting, and tapping. I continue to help her dress and do all of her readiness so she has no time alone to pick, but I will begin to fade that asap to get back to where she was following the map with minimal interference from me.

Another note on my feelings: yesterday, when I was self-talking, I came upon a feeling a real resentment that I was spending so much energy on Julia’s scabs when I should be dealing with my fallow year issues: healing, processing, and discovering purpose. This reminded me of a friend whose first sabbatical was spent, not in brilliant project work, but in gut wrenching personal work. We have to do the work in front of us. And the work of yesterday had to do with so much more than scabs.

The dog sits next to me as I type. I am sitting on one of the two chairs that I brought from my mother’s house that I installed in my bedroom. I’ve always loved this chair, and although I am not crazy about the material that covers it right now, I love the size and shape and the way that Latkah and I can enjoy the morning light coming in through my bedroom window. This is a good writing space. As I hoped it would be.

29 September 2011

Have a voice crying out in the wilderness moment. Actually, screaming out in the wilderness.

Feeling at the end of my rope about Julia’s picking. And sinking to a new low in how to cope with it. These have been the strategies I’ve been using so far, not necessarily in order, but as they come to me. Upped her Adderall and her Prozac, in an effort to increase her frontal lobe function to give her a better understand of what she is doing in the case of the former, and to decrease her anxiety in the case of the latter. Twice a day, I am doing EFT, an alternative medicine technique which uses acupuncture points that aims to pacify negative disturbances. Every day, I do strong sitting and a loving kindness meditation. I put creams and lotions on her skin to help heal her many scabs and to keep her skin from getting dry and itchy. In the morning, I put bandaids on her arms on the worst of the scabs to physically prevent her from getting at them. I cut her finger nails short for the same reason. I dress her morning and night to make sure that she does not have time with her body alone. Her autism therapists and I have just started a few series of alternatives and reminders -- signs in the house to remind her not to pick, coins with stickers in the bathroom to allow her to pick at the stickers when she is on the toilet and has access to scabs while she is peeing. Talking to her about her body, its health and well-being. Visualizing healing.

We talk about negative reinforcement. Specifically, showing her pictures of infected sores and comparing them to the scabs and sores on her body. For me, that has been a bit drastic and unkind, but this morning I sunk to a new low and told her how ill her body could get and that it could keep her from going to school and eventually she could die from it. I felt incredibly sad, like I was losing her, like she was dying in front of me.

I did not push her through her morning, like I usually do. I asked if she wanted to take medication and gave her the option of not taking it. The same about eating breakfast. I told her that if she didn’t want it, she should not eat it. I asked her if she wanted me to pack lunch. That if she’d rather not eat it, I would not bother to pack it. And the same about strong sitting, if she didn’t want to do it, she could pass. The same about putting on her coat and catching the school bus. If she didn’t want to put on her coat or go to school, it didn’t matter.

This morning was terribly abusive. I gave up on her. This is the last thing that Julia needs and I did it. It was awful. I was going to moan about this for a few more paragraphs and dig myself deeper into a hole of depression and anxiety, but I called Marilyn, our attachment therapist and I am seeing her at noon, before our regular appointment at 1:30. I need help because no one, not even me, is going to give up on this child again. I love her too much for that.

28 September 2011

A posting on Facebook of a Japanese mother who died in an earthquake when her house collapsed on top of her, but she was in a position to protect her 3-month old child and left him a text message of love on her cell phone. “If you can survive, you must remember that I love you.” Ya’ know, I would be pretty good in that extreme life or death situation. I’d do the right thing. I am pretty sure of it. It is in the practice of the day-to-day that I stumble and trip over myself. I think that is pretty common but worth saying this morning.

I awoke with some yearning to put my bedroom in order. Yes, my clothes and basic furniture have been where they belong for weeks now, but the walls are bare and to me this feels like a house that is being moved into or out of but not a home yet. I have enjoyed the blank, clean pallet of this house since I came home from vacation. It has served as a good break from the past, a good pause with time to reconstruct, and as I’ve said before, I had the grand idea that I could rearrange, repurpose, and make the house over new, making it different from when it was shared with David. But, again as I’ve said before, I was the one to arrange and decorate and for many things, I like the places I decided to place. And this morning, I have the urge to begin. The blue carpet for my bedroom, the wall hangings from Vietnam need to go on my wall, the mirror in the upstairs hall. Slowly, slowly art. I need to buy picture hangers.

Yesterday, I was listening to a book on tape and the author was describing memories of a dead loved one. In a rush, I realized that I could not think of one specific memory of David. My mind raced as I scraped the dusty corners of my memory for scraps of specificity. Not the general memories of shared meals, celebrations, travels. For a moment, I could not retrieve a single one. I breathe. I have been pushing memory moments away in order to keep myself together, in order to keep moving. Those memories hurt too much to keep in front of my head. I needed them in the high back corner of some mental closet. I was safest with memories out of easy reach. Oh, so many memories still flooded in -- at times overwhelming me, stopping me dead in my tracks, too sweet, too painful. “Sometimes I stand in the middle of the floor. . . ”

I breathed. I have been protecting myself from collapse and now, I don’t have to do that quite so religiously. I can loosen the grip just a little bit. When I did that, the first memory that popped into my head was of David naked and getting into bed. No, this is not a blue moment. Hardly R-rated. Just a memory of his strong, almost always young body. Compact and sturdy. Lovely. Vital. Very much alive. It was an every day memory and a memory of the many, many days and nights of our being together. I remember fitting into his shoulder as we lay ready for a nap or a long night’s rest. Just the simple time of together. Right now, this is not a completely happy memory. It hurts to remember. It still hurts, but more of an ache, not the sharp physical stabbing pain of last year.

Much later, my plans for the day went sideways and I spent most of the day cleaning up my desk, paying bills, and working on my mother’s estate. I have been paying bills as they come in this month because I needed to be able to put my kitchen cabinets on my credit card. In the old days, before death, this would not have been a big deal. The cabinets, although expensive, would not have put me so close to my credit card limit. We had a really big limit. But I don’t. If I was an excellent blogger, I’d reference back to the day I called to get David’s name off the credit card only to have the card completely cancelled because his name came first. Oh, the thought of that still makes me angry! But, the upshot was that a new card from a different bank -- my current bank and not the bank that we had retained the credit card for almost as long as we were married. And as people who use only one credit card, there was a lot of charging that went through that card -- and still the best they could do was to cancel. $%^%@

No, really I am fine about it now. But . . . the new card came with a small limit that I have not come close to making in the past year until last Saturday. I could have called and asked for more credit but didn’t. I wonder if the card company will increase it themselves. Or are things different in these financial times.

But because of my constant bill paying throughout the month to clear my card for the big charge, I had not really sat with bills and such since I got back from vacation. I put away a lot. And then wrote a letter to the estate attorney who asked to be paid for work done in the last two years and who wanted to know the status of the Bloomfield house and a few pointed financial items. I had written during the summer that if the estate was not resolved by September I was going to step down as executor. My attorney was not pleased with that news. One of my siblings wrote, “You know what David would have wanted you to do,” and reminded me that I was not a “quitter.” Well, I felt for my attorney. And David would have chided me for not stepping down a year ago!

I have not been in a bad marriage, or had that many bad friend experiences -- one, maybe two, but that is all -- but the estate situation reminds me of the bad plays that I was in that I knew I should have gotten out of before opening night. Two productions, in particular, which was badly managed and bad, bad plays. Each time, I stuck it out to the end out of some misplaced sense of loyalty. In one instance, if I had left, the opening would have had to be put back. But the opening was terrible. So, if I had left maybe the play would have been improved. Maybe there would have been no play at all, which would not have been any great loss to the art world.

Hold on for a little while longer, my attorney said. That was July, Saturday is October. Tank remediation is finished, but restoration of the property has not been finished because the adjuster needed to see the property again and the adjusters were busy with hurricane claims all this month. With luck -- like I’ve had any of that in this instance -- work will be finished by the end of October. Hitting the market in November is pretty grim making the possibility of sale before the end of the year dim.

And so, again, I hold my fist up in the air, curse the heavens and say I will not be working on estate matters in 2012.

When I compare my mother’s estate to the other family estate’s in the last few years -- my father’s and David’s estates were settled in about three months. David’s father’s estate will be finished in, at most, 6 months. My mother died in June 2009. And I am very grumpy about doing the work.

27 September 2011

I’ve been reading Simon Beauvoir’s “A Very Easy Death,” about the last illness and death of her mother. It is a very slim volume and I expect to finish it tonight. It is more about the illness than the death, and although I was hoping for some pearls of wisdom from the great writer, there is between this mother and daughter some fine compassion and early love that I cannot relate to. And it is about a dying, long enough for children to linger at a bedside.

“I had grown very fond of this dying woman. As we talked in the half-darkness I assuaged an old unhappiness; I was renewing the dialogue that had been broken off during my adolescence, and that our differences and our likenesses had never allowed us to take up again. And the early tenderness that I had thought dead for ever came to life again, since it had become possibly for it to slip into simple words and actions.”

Pretty lovely. I had wished for the same from my own mother. I thought I made the attempt but she would have none of it. Early tendernesses were not for grown children, if they had been there for little ones. Others have said to me, ‘she was very proud of you.’ and ‘she was proud of Cheshire.’ I don’t think it was pride that I was looking for.

I did not know a dying David. Well, I did, but didn’t know it. To me, to us, there were things to go through, set backs to overcome, but before his heart gave our that morning, there was no dying. Oh, we were optimists.

Julia is a bundle of contradictions. Lately, I have been obsessed with her body -- the healing of it. I have cleaned and salved and bandaged different parts of her body day and night in the hope that picked scabs with little bruises beneath them will be healed. Her arms are still pretty bad. I’ve gone through three boxes of bandaids in a week. I worked on her legs first and now that they are almost always covered, they are looking better. Makes me think I should have concentrated on her arms first, but those legs! Oy. It hurt to look at them.

She can still be so difficult for her therapists. They need to remind, prod, suggest, and bribe her to do as they wish. I listen from my second floor perch and lose all hope of good behavior and maturity. I thumb back to September 2009, before the transplant, before death, before healing, and I am eerily in such a similar place to where I am now. Have I lost so much ground? It is all a path, I know there are no guarantees about progress, and I am sure we lost ground last year, but still . . . oh, I don’t know. I do want progress and I want to look back and feel enlightened and further along the road. It is just not time for that. Yet. I hope yet.

I read about Julia bringing home papers with addition problems in second grade. Actually, I don’t remember any of this. I think most of second grade has been blocked from my mind -- the school year of waiting for a heart. Was she doing addition? She cannot do it now. She does not understand the concept. She is getting closer, but by inches, millimeters. For math, we are still working on number understanding. When she was in second grade, I was working at home on reading and word recognition. I left math to school. It would be another year before I realized that she did not understand counting, or more or less, or bigger or smaller. We work at more and less. Now. Still. She understands a careful process that I’ve (with Cheshire’s help) put together, but ask her if she wants 2 or 5 reward points for some good behavior and she is just as likely to say 2 as 5. She will change her answer if she says 2, but she is reading my reaction, she cannot figure out which is more without engaging in our careful process.

I don’t know whether I am making her sound more disabled that I used to? Did I believe her to be further along, not understand the full scope of her inability to grasp basic ideas? I hear her ask her therapist, “What are your years?” instead of “How old are you?” It is good that she is asking -- showing some reciprocity, but her question language skills are weak. She engages in conversation starters more frequently, and she is getting better about giving some background to her comments, e.g. “In the movie, Tangled. . . . “ instead of just beginning to talk about Maximus the horse. But it is hard to trade comments more than three times with her. There are no in depth conversations. I try, actually her therapists are also trying, it converse with her using statement more than questions. Not all conversations are question and answer, but this is hard. A comment does not necessarily elicit a response, at least from Julia. Of course, we did start from a pretty primitive place -- she never answered questions.

She asked to play UNO today. This game used to be so hard for her and I really thought we would never get to play it. These were the cards that we carried to China, ready to teach our five and a half year old to play. Games using numbers can be great first games for kids without English, but who have been to school and understand numbers even in a very basic sense. There are lots of stories of kids learning quickly, amazing their new parents, and playing on the plane all the way home. Five years after we made that journey, Julia wants to play UNO. Needless to say, we did not play UNO in China. Stacking cups were a challenge. I am grateful for the progress but it has been a long time.

Julia’s teacher wrote me that Julia spelled all her words correctly on a spelling test last Friday. She has a new list this week, and we are working. She appears to understand the reason that we practice and learn these words, and in truth it doesn’t seem very hard for her to learn them. All very easy words, with the theme of some sound -- -or words this week -- and at times she seems to be sounding them out as she spells.

There are hundreds of paths up the mountain,
all leading in the same direction,
so it doesn't matter which path you take.
The only one wasting time is the one
who runs around the mountain,
telling everyone else that his or her path is wrong.
~~ Hindu teaching

26 September 2011

28 book boxes unpacked.

As I put the novels on the dining room shelves, I could see that I was never going to shelve all of the books I had unpacked. I felt panicky. Silly, yes, I know, but unsettled. And overwhelmed.

2 boxes of film books repacked for Linde or Sarah or the second hand store.

6 boxes of books repacked the second hand store. Many of these books are David’s bought for teaching or researching some topic he intended to write about, but I am also letting go of many of my books. Books that I have no interest in reading again, and also would not recommend to someone who would ask to borrow something interesting. Funny that. Good criteria for me. Lots of science fiction that I generally love but am usually disappointed by.

To quell my panic, I pulled books from every pile and shelve that I did not need to keep. Suddenly, huge unwieldy piles looked more manageable. It was the third that I predicted I needed to get rid of. And I could reduce further, maybe another 10-15%, but I think these will all fit. Maybe when I pack these up for some further adventure, I cull just a little bit more.

Most problematic are theater books. I got rid of the how to books of my theater life and who needs “directors on directing,” but the scripts? I cannot seem to move them to a discard pile even though I cannot imagine a use for them. I would not deprive myself of play scripts that I had used for performance, but all those others? The scripts plus a few theater history books, mostly about 20th Century theater rest in the long shelve on top of the living room windows.

And after the worrying that I’d have more books than space, I will have at least one empty shelf, and some room on other shelves to expand. Breath a sigh of relief.

I sit on the couch. It is late and I need to walk the dog one more time and get to bed. As I look at the books on shelves which to me says home more than any of my other possessions, I want David to see this. I want to share this. And then, I let go of that thought and take what is here as it is here.

Julia got through her first week of spelling words. At least, the home work involved with those words. She learned 10 -ar words -- bark, dark, car, star. One of the exercises was to draw pictures of six of the words. She does not grab onto the easy words. She chose dark and bark and drew scenes in the little boxes on a page that captured each word. There was a dog barking, but also children who were afraid, one who had his hands over his ears, and a tree with a squirrel looking at the scene and wondering why the dog barked. Maybe this is a kid with ADHD at the end of the day with her meds worn off or maybe it is a marvelous imagination at work.

As I continue to work hard and on a number of fronts on Julia’s picking of her skin, two new behaviors emerge. She is rubbing her thumb and pointer finger together obsessively and then smells her fingers. And the newest behavior is a compulsive perfectionism in the way that she makes her letters as she writes in cursive. It shows up when she plays with cards and has to touch and arrange discard piles perfectly. Watching these behaviors emerge, I recognize them as habits of older autistic people that I have met. I am scared that managing behaviors is like putting out brush fires, like herding cats, like trying to put the milk back into the bottle after it has spilled. Catching the underlying anxiety as it spills and oozes out. Scary.

I was at clinic early today for a number of reasons, I sat as parents came to pick up children. A boy, about 12 or 13, big enough to be hard to handle if he wanted to be, was having trouble transitioning from his therapists to his father. His father wanted to leave “on a good note”, he said. Oh, I so recognize that attempt at parental control. Doomed to failure. The boy was angry because another child had put some lego together in a way that this boy considered “stupid.” The therapist mouthed the familiar mantra of “friends have different ideas” -- so much a part of Julia’s training right now -- but this boy was hearing none of it. He was saying mean things about never wanting to talk to his therapists again, about ripping the clothes off his father, about teaching that other kid a lesson -- and all this for using lego pieces in a way he considered stupid. (Although different in content, I recognize the impulse to talk about hurting others. Julia does it at times, although she isn’t as creative with her punishments as this boy was.) The grownup around -- father and therapists -- never really calmed him down before he left. He had no ability to calm himself. And he was no longer a little kid that could be picked up and carried out. Again, scary to see, to contemplate, to wonder if I will find myself in that position in a few years.

And yet, Julia is not that boy. She is learning control. I have no idea what puberty will be like and it is a worrisome time for kids who are developmentally disabled. Heck, it is a worrisome time for NT kids. I am still putting bows in her hair, I still wash her hair and bathe her, and these days, I am still dressing her. I can’t even remember when it was that I stopped doing those things for Cheshire.

I am just worrying tonight. I need to sleep and think anew tomorrow morning.

24 September 2011

Three things about today:

1. It is David’s birthday. I did not mention it to Julia. Texted about it to Cheshire. I am okay. Sad. Okay. Sometimes I still want to scream at the heavens. I want to ask for the why’s. But my screams are quieter and less frequent. Even the desire to scream.

Storing blog entries on my computer files, I am back to transplant time. What struck me today was how fearless we were. Well, we had no choice. It was transplant or death. It was like facing into the wind, facing the ocean and letting it roar. Just facing it.

I think we were brave. Maybe for the first time, I was really brave. Not out of any inner strength or calling, but out of necessity. Maybe that is what all bravery is. Necessity.

I feel the emptiness of losing David’s father as well. I called him last year on David’s birthday.

And it is David’s birthday.

2. I ordered my kitchen cabinets today. Ed, my contractor, and I visited the store last week, which came after a series of meetings between us to tweak the design. I did it today because there is a sale that ends tomorrow. I made one change today.

Gosh, I wish David was around for this. We had wanted a new kitchen in Indy and worked on the design for this one while he was in a hospital bed. I am not saying that I am doing this as some kind of weird fulfillment of his dreams. This is totally for me. He would definitely have fought me on big parts of this kitchen. It is not as traditional as he would have liked. And that is okay. This is mine.

3. I finished taking books out of boxes today. I have a lot of books. I need to get rid of at least a third of them. I’ve said this before. I know. Now the reality is sitting in piles in the dining room. I know I need to write more about getting rid of books. Forgive my indulgence. But not tonight.

Begun on 23 September 2011, and continued on Saturday, the 24th

I am at the Waisman Center, talking briefly with my mentor from last year, and now, waiting for a lecture to begin. The researcher and speaker for today, is Richard J. Davidson, head of the Center for investigating Healthy Minds, very distinguished and very brilliant, good writer, friend to the Dalai Lama. We pass in the hall. I smile at him -- knowing who he is and wondering if there is something that I can say to trigger some excitement about me, but there is not. I attended two lectures he gave and he doesn’t know me at all. He returns an absent smile and I must contend myself with that. A smile that only recognizes that I am not a complete stranger to these halls. Even that is nice.

Another person -- a youngish, blond man -- stops him in the hallway and spills out a project idea and asks, no, begs, for more time with him to fully explain, to gain his support, to put himself and his project under a wing. The director is unimpressed and wants to move on. He comments on the youngish man’s ideas and great enthusiasm -- salutes both. This is the kiss of death for sure. Does the younger man know that? The energy flow in and around the men has substance. I can feel it all, the rush of pleading, the muffle of rejection, the swamp of self-pity. Drama and despair in the hallway. Did someone’s life change as I was casually observing in a hallway?

The topic: Order and disorder in the developing emotional brain: Prospects for cultivating healthy minds. I am blown away. How I miss being intellectually overwhelmed! At times over the past few weeks, I’ve wondered how I possibly survived last year, especially during the Fall right after David died. Well, I survived because of lectures like today. I survived and dare I say very dramatically, found reason to get up every morning because I could go somewhere and learn neat stuff, listen to smart people, and indulge in disciplines that I had not even dreamed about. As I listened to the lecture, understanding every second or third word, and only barely grasping conclusions which were phrased in more recognizable English, I teared up remembering how this new world of development and brains and children and research demanded my attention and drew me out of my shock and grief.

I can feel the part of me that longs to belong there, at Waisman, at a place like Waisman, somewhere where research and good science for kids is going on. The work unraveling more and more of the mysteries of the brain is like food to my starving mind and heart. But although I can swear that what I just wrote is true, I have no idea whether this idea will come to pass.

During my meeting with my mentor, I asked her how the second year LEND trainees were doing and if there would be room next year for me. I am place-holding. Reminding. Making sure no one forgets that I want a place there. It is almost reflexive. I have been pretty awful about marketing myself during this lifetime. Maybe there are lots of reasons, that I won’t go into here, but suffice it to say that had I been able to market myself to any credible degree, my theater work, as well as law work, may have been more rewarding. And in neither world would I have, so obviously, self-advertised or would I even stay in touch with the people who could do me the most good. But here in this world in which I have no qualifications and in which everyone, I mean everyone has letters after their names, many of which are mysteries to me, I can just come out and ask to be remembered. But, and here is the rub, but as easy as it has been for me to speak up for myself, as I was doing it on Friday, I have no idea whether I will want to be there when next year rolls around.

Even as I was saying the words, there was a chill running down my spine and I had the distinct feeling that this was not the place for me. I wanted to fight that feeling, I wanted to ask for a second opinion, but it was no use. The impression was true.

And I don’t think that it necessarily means that I will not do a second year of LEND next year, I feel like it means that there are no assurances. Something deep inside of me has taken up this idea of a year of fallow and taken it very seriously. I have cut ties with my box, with my known world. I am exploring where I have been and what is inside. I am purging, cleaning out, emptying. And there is a part of me that will not allow any assumption of what comes next to enter. No comfort here.

For a long time, even years before David died, I felt to be on a precipice, waiting to jump and to see if the angels would catch me. Well, I’ve jumped, or been pushed, and indeed, the angels are taking care of me. But angels have their own rules and I am living by them.

No assumptions, no assurances. I don’t mean that I am walking down a totally unknown road. This is not some unique road to self-discovery, but I have not done this work before and I cannot count on where it will end up. This impermanence is not easy for me to live with but I am learning about the present and about today. And today, I am thankful for what I was doing last year when I needed to be at Waisman.

23 September 2011

This morning, Julia strong sitting and grinning like the proverbial Cheshire Cat. Where does this child find such joy just sitting looking at me? After I give her instruction after instruction and order her world, her life, like a drill sergeant. And she is still smiling, closing her eyes in a Buddha-like pose. When she isn’t squirming, when she isn’t looking at spiders or wondering about when other kids will be at the bus stop, she is my Buddha.

Julia wakes up each morning asking what she is going to do today. I tell her, school, then therapy with which therapist if I can remember (or else we check on her calendar downstairs when she gets there). She is beginning to refer to her therapists, who have been formerly called “friends,” as her “therapist friends.” This signals at least to me that she knows about friends, kid friends, and knows that she does not really have them. To put an optimistic spin on my pessimistic fears, if she recognizes that other kids have kid friends, she will make an effort, a bigger effort to learn behavior that will help her to make and keep friends. She still has no idea. She is still incredibly inappropriately friendly.

This morning, I told her that after Ellen comes over, we will go to school and watch the movie Up at school. Franklin Movie Night! My project for the spring and fall. I am hoping to show Myasaki in the Spring at Randall. The licensing corporation only has permission to license “Howls Moving Castle” which is one of our favorites but not really suitable for the littlest of kids. It would have been great to show “My Neighbor Totoro” or “Ponyo,” but neither is available.


Julia looks forward to the movie -- wearing pjs to school at night, bringing her dinosaurs. Lizzy will be coming -- purple T-Rex, born in DisneyWorld -- but there is also Sally, sent from London who I always imagine has a British accent when she roars, and Lukey, a Jersey dino with a big head who was a gift from a grocery store manager. I routinely kiss them all good night and wish all my girl-dinos sweet dream and a good night’s sleep. It can be breath taking to watch Julia arrange stuffed animals in bed as if she has always been safe and warm and well-loved.

May I be safe,

May I be happy,

May I be healthy,

May I live with care.

Julia can rip through our loving kindness meditation which we say twice a day -- once after strong sitting in the morning and again before I turn on the night light at bedtime -- but she still likes when I say it back to her, and she never fails to add “with me” when I do the second set of ‘mays’.

May you be safe,

May you be happy,

May you be healthy,

May you life with care . . . . with me.

This morning, I am still surrounded by books and boxes of books -- 20 down, unpacked that is, and sitting either in shelves if they are novels, or on the dining room floor in piles with tags like, travel, theater, poetry, short story, plants, film, reference/writing, religion, art, history, biography, memoir, general non-fiction, and DS/SB writing. Six more boxes to go. I imagine that I will have opened all of the boxes and sorted books before the weekend ends. If I had room on my shelves, and if I was contemplating never leaving this house, I would just sort, alphabetize and put them all up, but, and here is the rub, there are simply too many for the very ample new bookshelves that are installed in the living room and dining room, and truth be told, I really do not want or need all of these books.

Now, also truth be told, I have opened box after box and felt like I was at a lovely reunion party. All my Allcotts and Austins and Joyces and Tylers and Irvings and Woolfs and Yezerskas. Yes, I have been alphabetizing the novels. All back for my view and available to be touch, taken down, skimmed, and read. Can I tell you my joy? Such inspiration! Such a feeling that I want to read every one that I love. Now. Again. And then dive headlong into those wordy friends that I have never read.

I make a quick resolve to give myself some time -- maybe a week or two this winter, after the kitchen is finished and all is clean and put away, maybe as a break from the sorting which will need to be done and finished this year -- to just spend days in front of a fire, with an infinite supply of tea in Uncle Harold’s lovely, humongous cups, reading. Browsing my ‘collection’ and making a stack to read for pleasure. No deadlines, no agenda, except for pleasure. There were years when I’d read all my Austins just to hear the sound her her voice in my ears. Salinger could grab me the same way -- swallow it whole, read every word.

A bit less than half of the books had been out of boxes and on shelves since I moved into this house, but the rest have been stored in moving boxes under the basement stairs. The boxes are dirty and I dreaded cleaning, dragging, lifting, and getting them up to the dining room. But what a reward once they are there. I know this is such a confession of a geek, but I could almost tear up over each box, packed in Indy, books taken down from my first set of built in bookcases, sorted and considered back then. And now, again, on my shelves. My old friends.

Oh, and I wonder about Julia’s choice of friends. My own may be suspect. How will I ever teach her appropriate behavior. Ha!

Still, one of my goals, that simplification streak running though my this year, is to cull the collection to the size of the bookcases. To have no book in a box and out of view. I suspect that I will have to get rid of at least 20% and probably closer to a third of what I own. Gazing over the piles right now, I can let some go because my interests have shifted and David’s interests do not have to be considered in this culling. I really have no need for books on experimental film making and countless movie scrips. The plant pile is surprisingly small, or is there more in one of the last 6 boxes? Some reference books can go, some theater, and some outdated travel books. I know there will be a few hard choices, but I also know that I don’t need “Stanislavsky Directs” or “The Complete Book of Food Counts.” Most of the easiest to cull were expelled in Indy, I steel myself for decisions.

I find I have an extraordinary number of books related to history -- and this is apart from biography and memoir of which there is also ample numbers. Most of the history books are mine, some collected very intentionally as Cheshire was reaching for independence and before Julia arrived on the scene. They are books of pure interest -- no school project inspired them or major study required them. Of these books are a few that my parents took from my grandparents’ house when that house was broken up after my grandmother died. These are a few -- maybe 6 or 7 -- pictorial histories of the Civil War. I never saw them as a child. They were boxed in the cellar somewhere. I am loathe to let these books go, even though I have never had an interest in the Civil War but these are a sort of literary bequest from my family of origin. They are the only books of theirs that I have ever seen.

I do suspect that my grandfather picked up these books, a whole box of them, on one of his walks. My grandfather loved to walk and he loved to pick up other people’s junk, bringing home pieces of furniture, broken machinery, parts, parts, parts. And the man always found money. And probably, one box of books.

You see, my grandparents did not read. Yes, they could both sign their names. I have a vivid image of my grandfather signing the papers to get his citizenship when I was a very young child and he had been in the USA for at least 40 years. I remember his carefully forming the letters in a style that was somewhere between Ukrainian Cyrillic and standard English. Even as the young child that I was, and I must have been in first or second grade, I was in awe that my grandfather, who was intelligent, creative, caring, and so very interesting to me, needed to be so deliberate to do something that I did with ease. I remember thinking that we were different and the thought both scared and excited me.

There were no books in their house. My grandfather would bring home the New York Post, not even the wordier Newark News or Star Ledger, after work and he would sit down at the kitchen table and look at the paper. Sometimes my grandmother, who was probably better able to read English, but still very slowly, would read the caption under a photo. By the time I was in fourth grade, they would ask me to read, which I would do in my halting, stuttering manner. Now, I wonder if my father and uncle had done the same for them when they were children. And now, I also wonder about my parents’ generation, children of immigrants, maybe first readers in their families all, children of peasants who had made the journey to the New World leaving an Old Country behind. But they lived in community with families that were just like theirs and possibly these thoughts of difference never entered their heads. And here I pause and realize that I have questions, at least one that I will never be able to ask anyone.

We, my parents and siblings, were better integrated into the American way but on my block most visiting grandparents had accents and cooked great pots of ethnic food. And probably did not really read any better than my grandparents.

Reading and later writing, were the province of children. Of my generation, even more than of my parents, who although both of their careers -- printing and office administration -- were necessarily heavily involved with words and grammar, did not read for pleasure. Gosh, I remember my father putting up a wall of kid wallpaper in my East Village apartment before Cheshire was born, commenting about our extensive book collections -- which was no where near what I am looking at on my dining room floor! He said, “What do you do with all these books?” and “Do you really need them?”

Again, our difference. And I reveled at that difference at that time. My unborn child would grow up with the New Yorker in the bathroom and the New York Times on the kitchen table. She would have book cases in her room and have books available to her at any time.

I don’t regret my reveling in the difference. Although I would like to ask my father, “how could you not have books in your house?”

There were a few but not many books in my parents’ house. An encyclopedia. Two sets actually -- one adult and one for kids. I did, as so many similarly situated children, read book after book, A through Z. For pleasure. My parents were, at least in the early years, proud of my reading. I think I read very early. I have visceral memories of walking to the Belleville Library holding on to the side of the big baby carriage and then strollers as one after another sibling was pushed and napped quietly inside. I was one of those kids who librarians loved and took an interest in, pointing out biographies that I might take out and allowing me to take books from the “young adult” section long before my child’s card allowed it.

And I imagined, no, just took for granted, that parents did not read much, that magazines were for doctors’ offices, that my desire to eat up the library was something for children, maybe no one before me had had these longings. I do remember when I realized that the authors of the books I read were my parent age, or of my grandparents generation, or even older. I think I was in second or third grade when I realized that there were probably children, just like me, who lived with parents who wrote books. I remember this revelation, sitting on the floor of the kids second of the library, reading the short bio at the back of a biography. “She lives with her husband and children in . . . “

How fortunate I was to have been taken to that library and to feel comfortable sitting on the floor. How fortunate I was to have been read to, at least in my youngest years, and to be asked to read to my grandparents. How fortunate I was to have been encouraged to do this thing, to read and do my school work, and to want more and more of it. How fortunate that I was raised strong enough to be able to revel in the differences between myself and the generation that was before me. I hope my girls can recall such specular gifts that David and I managed to give them. And I wonder at the gifts that they will give.

20 September 2011

“Didion's writing has never felt effortless; you can see the sweat. And it has never grown easier . . . “ --Interview: Joan Didion, Emma Brockes, The Guardian, Thursday 15 December 2005.

I have not wanted to, been led to, or come close to being obsessed with a writer’s work in a long time. This morning, I’ve just spent two hours goggling Joan Didion and reading every article about her. Last night, I read that a new book about her daughter’s death, 18 months after her husband’s death which was the subject of her “A Year of Magical Thinking,” was due out in November. I did nothing about that last night but this morning in the midst of piles of books on the living room floor -- piles waiting to be shelves or discarded, I skip from article to article, and wonder if I should start ordering essays and novels. Will I be satisfied with library copies? And this is after talking to Mary yesterday about how, in our middle years, we are not as inclined to buy books because ‘everything is in the library or on line,’ and ‘we do not have to own.’ Suddenly, I want to own everything she has ever written and gorge on it. I want to understand it from the inside as if I had read it years ago, as it was being written, when it was first published. I want to have ‘lived’ along side of her. The irony here is not lost on me.

So I will leave a little space on my shelves for Didion’s books, get out my highlighter and sharpen my pencils for notes in the margins.

I pause to wonder if it is just death that attracts me to her right now. It is death -- her husband’s and her writing of it, and now her writing of her daughter’s death. Didion says in an interview: But on “ '. . . the other hand, it’s a whole different level of loss.' She stops and stares at the table again. ‘This is the part I don’t want to talk about.’ She takes off her glasses, sets them down, and her eyes are flooded with tears. When she finally looks up, she says, ‘What I want to do as soon as I get through this . . . all of this . . . is basically be too busy. Take too much work. I figure that will get me through.’”

My friend, Toby, sent me Didion’s book after David died. I had read it a few years ago, no, listened to it on tape, and was touched by it, but this reading, after David died was . . . personal is too easy a work. I could not read it from cover to cover, but remembering chunks of it, went searching for those parts first. It was after I was through with it that I found out that her daughter died just before the book came out. And I cried. I do not cry for authors but I was so touched by all she had been through, of all she was able to explain to her readers, that it seemed more than cruel to saddle her with more loss. And although, David and I were not literary giants, in a small and very private way, I recognize in our life together, the coupling that Didion had with her John.

This morning it is the two quotes above that spur me on. I have always liked to see dancers sweat. I like to see the work. It is like Bertolt Brecht’s theater and Bill T. Jones' dance. Salinger has done that for me again and again. Is this Didion as well?

And what she says, even briefly, about her daughter’s death. “A whole different level of loss” I understand that. No, I cannot really understand it. My daughters are alive and well, but it was David’s death that ultimately pushed his father towards his own demise. We cannot lose children without dying ourselves. At least, just a bit. The only children that I have lost was a miscarriage before Cheshire was born, and my niece who killed herself when she was 19. Both of these deaths left me with great remorse -- a feeling that to this day does not ease although in the case of my miscarriage, there was very little rational reason for me to feel such regret. With Jennifer, my niece, however, there was more that I could have done. And didn’t because I was living my own life. I did not value her life. She was taken care of, somewhat adequately, her basic needs were met. Food. Shelter. Clothing. Education. But in this last year, as I’ve read much more closely about attachment, bonding, trauma, and their effects on the developing brain, my thoughts would return over and over to Jennifer. Sometimes I would think of her rather than Julia, whose attachment and bonding issues are clouded with behavioral challenges. There could be multiple reasons attached to Julia’s challenges, but for Jennifer, it all seems much too clear to me now. She was profoundly unattached to her parents and her life and death reflected that. I could not have, would not have, ever been her mother, but I could have been a much better aunt. Maybe that partner that Julia feels me to be. And it is for that, that I can’t wait to read Didion’s book. For the girl partner that I did not cultivate.

Amazon or the book store?

19 September 2011

Julia off to school this morning and we had time for strong sitting and a bit of tapping. Yes. A week into my new scheme. I am not perfect. I do not spring out of bed every morning but I am climbing out of bed. And that is a step.

Julia has been incredibly fidgety during strong sitting over the weekend and today. A bit frustrating. I imagine that we are making a leap forward and then I need to remind her about being quiet in body and mind so many times that there is no real quiet time. Oy! But we continue to do it. I am trying to believe that if we do it long enough together that there will be more good days than bad and eventually, Julia will get to meditation. Today the evidence is not at all clear.

The day started out rainy and I was not going to do the outside work that I hoped for. I have about a week’s worth of garden shaping, mulching, and cleaning until the leaves start falling and we get our first hard frost. It struck me as I worked last week, that I was accomplishing what I had set out to do in the gardens and the end was in sight.

But this morning it was rainy, and there was a pile of book boxes that had been sitting right in front of my fireplace on the hearth tiles. Maybe it is the cooler weather that moves me to start opening boxes. Having my friend, Mary, come over the morning and drink tea and help me with unpacking kept the work ethic up. I ended the day with only one more box to unpack -- but these were only the books that had been unpacked and put on shelves throughout the house when we moved into this house. I have at least twice the number of boxes we unpacked today in the basement. I will start bringing them upstairs the next time I work. My goal is to have no book storage at all. I think the new book shelves will hold about 50-75% more books than the old cases did, but I imagine that I will have to get rid of a third to a half of everything that I own. This may wind up being harder than sorting papers or getting rid of unused furniture. These are BOOKS! So many were for research of various kinds for my projects or David’s writings. So many theater and movie/film books that I no longer need or want.

Setting books on the shelves was very satisfying but sad at the same time. I have been living in this lovely blank canvas and with the new floors and walls, I have had a feeling of being separate from the old sad life and from so many memories -- a life from another time. I am putting our/my books on these shelves and will soon start hanging art that I hung in Indianapolis before we moved to Madison. I had hoped to move pictures around and hang it in different places, but I have always been the person to chose what to hang where, and so I am not so inclined to change positions just for the sake of change. I have had this idea that I was reclaiming the house, but in truth it has always been pretty much mine. David had a sort of veto power more than anything. He did have plenty of stuff in so many places and it is that stuff that I worked on last spring. More to come of that but not until the cold weather really sets in and I am done with books.

So, in trying all this change, I realize that I want to change to what it was.

I went down to the clerks office today for the first time since right after David died. I went to collect his things. So, it has taken me 14 months to get down there. I could have gone a year ago. But I didn’t want to. I didn’t want to be in the office and didn’t want more stuff that I would need to figure out what to do with. Well, it was not so much -- some framed diplomas, his honorary Kentucky Colonel certificate, two pieces of art, books, calendars, a few notebooks, the small keepsakes that I brought him from Vietnam and Bolivia when I visited without him, and a few pictures of the girls. And a jacket -- that just-in-case the Chief calls and wanted him in her chambers immediately jacket. I don’t know what I expected. I am not going to integrate it right away, but honestly for the small amount of new sadness, it is good to have all of his stuff under my roof.

The next phase of house renovation is almost set to go. Ed, my contractor, and I have been meeting regularly discussing cabinets, countertops, and prices. I am close to a final decision on design. And there is a sale that ends before the end of the month. There is no reason to delay. Cabinets will take 4-6 weeks to deliver. Ed will start demolition two weeks after we order cabinets, and expects to have me without a kitchen for 3-5 weeks.

I feel the continuing process of digging in, cleaning out, moving forward, and reaching backwards. Some spiraling. A completely unique but highly ritualistic dance. The music plays on.