Spicy Dragons & Dinosaurs

2012-01-30T22:21:00.002-06:00

When we are angry we are blind to reality. Anger may bring us a temporary burst of energy, but that energy is blind and it blocks the part of our brain that distinguishes right from wrong. To deal with our problems, we need to be practical and realistic. If we are to be realistic, we need to use our human intelligence properly, which means we need a calm mind. - Dalai Lama on facebook this morning.

How do I teach this to Julia? How do I practice this myself?

My dear friend, Sharyn, asked how Julia’s skin condition was doing. I did not realize that I had not written about it in a few days. I feel like it is all that I write about. Julia is getting better, albeit very slowly. She goes to school with less than 5 bandaids plus one bandage on her right wrist which covers five sores that are close together. Her wrist has the greatest number of active sores which are close together and when they erupt during their most itchy time, they are hard to resist scratching. I bandaid one and bandage the wrist. These sores show no sign of healing. The go through the cycle of eruption and calming down about every two weeks but even when they are calm, they do not look like they are closing up. There is another month before we can see the doctor again. I am hoping for healing because I don’t really know what else the doctor can recommend doing. There is just one sore on Julia’s left arm and a very few on her left leg. On her right leg, there are still many sores but a good number are in various healing states. There are a few on her trunk and on her butt. Some of these itch at times but there are few enough in any one place that Julia can either control her scratching or ask for help. She is not always good at asking for help but she is getting better.

I’ve resumed working on first time listening with Julia. We did some last summer but it seemed impossible to work on when there was so much itching going on. When I ask Julia to do something, i expect it done the first time. If she does not immediately stop what she is doing and answer me, i make her stand in front of me, look me in the eyes, and repeat what I’ve told her. When she repeats what I asked -- which can take awhile because she had not listened or does not remember -- I ask when it should be done. The right answer to that question is “The first time” or “now.” And then she does what I’ve asked. Sometimes she gets angry at me, especially when she is engaged in something she likes to do but it is important that she learns this for two reasons. First, it forces her out of her own world. To the extent that she is disassociating or that she is over-focused on what she is doing, she must learn to be attentive to the world around her. Second, I am demanding that I be the most important person in her life and that i must be listened to and obeyed without question. This is the attachment piece of learning how important mother is. Children who depend on their mothers when they are infants don’t need this lesson, they know how important mother is because they have experience that care even in their earliest years. Julia did not get such care and needs to get the lesson inside of her.

We go through the exercise whenever she does not listen and obey, wherever we are. Her line therapists do a similar exercise, more for the first reason then the second. It is slow going and will take a long time, but we chip away at the resistance as well as the lack of concern that she exhibits. There is a part of her that wants to please me and her therapists and we tap more and more into that part.

I worked on a new work book for Julia today. Last year, Marilyn worked with Me and My Volcano with Julia and this fall, we started with an adoption workbook. However, the adoption workbook explores orphanage life very briefly since it seems to be most geared to child who were in foster care or multiple placement in their family. So, we’ve been talking about a workbook that would be very specific to Julia, telling her story as much as we know it and filling in some of the gaps with appropriate guesses. It was good to work on today but it is a very sad book and had me close to tears all day. I’ve sent the first draft to Marilyn to get her feedback. I am excited that Julia is actually ready for this step. We have been building to this point for a pretty long time. Julia has some of the vocabulary to described and understand her feeling, especially of anger, fear, and sadness. She has been somewhat ready to confront some hard issues and I am interested to get Marilyn’s feedback and to get started. There is an introduction that tells Julia how to use the book. Each page will have the paragraph of story at the top, a space for drawing, and then three lines at the bottom for writing. The basically apes the format of the other two workbooks. It is a format that Julia really embraces. I am anxious to get started.

2012-01-29T08:18:00.000-06:00

Yesterday, I was at the Waisman Center for A Day with the Experts: Autism. Presentation of research findings and ideas. This is the third time I’ve come to this yearly event. A few faces are familiar, a few of the organizers smile or wave, but I did not spot anyone who I knew until the end of lunch time. Lots of students but lots of parents and professionals as well. The autism world, even in this small place, is so much larger than I have experienced.

I glean bits and pieces, looking for some that I can make use of, some practical ideas because no matter how theoretical the ideas presented at Waisman are, there is at least some, and possible a lot, of evidence to back it up. The amount of evidence necessary to promote a therapeutic tool into the evidence based category is so expansive that so many therapies and therapy tools never make it into that esteemed category. Anecdotal evidence is not sufficient. I chafe at times under those qualifications but what comes out of the research community at Waisman is vetted.

Brain imaging: Data, a few conclusions, and projections of where to look next. Brains on autism are different. The long distance connections between different areas of the brain are fewer and not as strong as NTs. Interesting. Intense use or exercise of the corpus callosum and also activities that demand that both sides of the brain be used may increase long range connections. Good long range connection is necessary for quick verbal response, among many other things. Now, where to go with it?

Transitioning together: Data shows that parents with kids with ASD are more stressed throughout the life of their child. Umm, knew that one, but some interesting information about social groups for teens and their value. Adolescence and adulthood are not easy on those with ADS or the families.

I heard some conversations as I sat quietly waiting for the day to begin and for lectures to resume after lunch. A few parents and an elementary teacher complained that there was nothing there for them. I thought to turn around and tell them that there is but that they must decode the reports on the research for themselves. This is not a how to conference but a report on the recent research before or just after it is published. I understand the frustration -- I feel it often -- and I understand the intense desire for any kind of direct answer that will help their child, their students, but that is not available. In a great sense, we are privileged to be invited into the refined, scientific air of the Waisman Center. The could keep it all to themselves and let people like me hear about the “latest research” years after it is published when it is filtered down to us and translated by therapists or school experts. They allow us in, and will answer questions if we can figure out how to ask them, but it is up to us to strain towards understanding.

It has been nagging at me that Julia has been on the same reading level for almost the entire school year. She can decode at a higher level, but she does not have sufficient comprehension skills to progress higher. She cannot answer those wh- questions about what she reads. Granted she did go from zero to mid-second grade last school year, and maybe it is just that the comprehension piece has to catch up to her decoding and that will take time. But there is also the worry wondering if this is a plateau which she will stay at for a long time, so long that forward movement stops. Her reading teacher, who passionately loves Julia, told me that she was doing some reading at a higher level with Julia so that she learns more vocabulary. She is reading non-fiction books with Julia and sends them home after Julia reads through them twice. She wanted to check whether I was re-reading these books with Julia to make sure she understood all of the words and to question Julia after each page about the material on that page. The books are copied and stapled and any pictures are black and white. Julia loves to color these books as well as read them. I pick them up now and again to read but have not made an effort to highlight them. From now on, I will and will encourage our therapists to do the same. This is also good material to take words from to make the word search and crossword puzzles. I spent some time doing that yesterday and came up with pretty huge puzzles. I think I will make some simpler puzzles to start with and we’ll work towards the large puzzles I came up with yesterday. Julia is fascinated with both word search and crossword puzzles. Last week, she found a NY Times crossword book that I had gotten David for a Christmas gift and that he began using before his health and energy began to decline. She wanted to do one of the puzzles with her therapist. Imagine, Julia doing a NY Times crossword puzzle! Well, not this year, but who knows. She has such a will. I was going to send that book to Lisa who loves crossword puzzles, but I wonder if I should keep it for some future Christmas. Can I dream of a day when it would be an appropriate gift? So sweet it could be, a few of the puzzles done by her daddy?

Last week, the book that was sent home was about prairie dogs, this week’s about whales. “Mommy, a baby whale is a calf and it stays by its mother for a long time.” Like you, I thought to add. The book is 40 pages long and contains over 1,000 words. Progress is slow but remarkable. The future is scary, to me at least. When I go to conferences like the one I went to today and hear about adult living situations, loss of ability after high school, and lack of appropriate employment opportunities, I go cold inside. But then I come home and make a 25-clue crossword puzzle that I am almost sure we can work up to in a month, and I am buoyed up with dreams of ability and accomplishment. The reality lies somewhere between. I need to hear and feel both to keep the challenge going.

The reading teacher who is one of Julia’s aides during the day, also told me that she did not agree with the consequence of sending Julia home if she picked or scratched at her sores three times. She didn’t think it would work, and she thought it was a cruel consequence for Julia who sincerely loves school. I understand her concern and her reaction. I felt the same way at first, and it did feel like a sort of tough love exercise. It may have been. But it also was the best and maybe only way to get Julia’s attention, and the attention was what we needed to get her to control the behavior which hurt her body. I don’t know if what I said, even the very successful result of our behavior plan, changed this teacher’s mind.

As I listened to her, I also was observing myself. At one time, not so long ago, the implicit criticism that this teacher was offering up would have been hard for me to hear. I would have seriously doubted myself, but in this situation I felt that even if the behavioral program did not work that I was doing what was most appropriate and best for Julia. As I listen to the experts talk about the difficulties of adolescents and adults with ASD, I don’t wonder if this new found decisiveness will come in handy in the future. The weight of responsibility is not easy to take up. I always carried it, especially for Julia. Oh, and there are those who laugh at me when I say that parenting Cheshire was a matter of letting her do what she wanted to do. I mean, I mean. I was responsible for Cheshire, but she was ready to take on small bits of responsibility, like what instrument to play, very early in her life. Responsibility for Cheshire was shared among the three of us with Cheshire always longing to make more decisions and David and I dolling responsibility out little by little until she was able to do it for herself. Julia is that fourth child at the Passover Seder table, the one who doesn’t even know how to ask the questions. The Hagaddah says that it is the adults’ responsibility to respond to each of the four types of children in ways that bring them into the greater community. What is the response to the silent child?

Experts say that it is the parent who knows their child the best and so, the parent must have an active role in any therapy, education plan, medical plan for their child. But knowing “best” is an awesome responsibility and I, for one, knew early the depth of my lack of expertise and knowledge. I wanted experts to tell me what to do and many of them turned the question on me, on us. I understand in my gut the feeling of overwhelm and loneliness of parents who feel that what is “best” for their child is completely out of their realm. The learning curve is steep and the learning is slow and arduous. Parents are blamed for falling off that curve and giving up for one reason or another. But it is hard, very hard, and anyone one with children who have typical journeys from childhood to adulthood have no idea at all. I know, I had no idea.

I don’t know if I can ever explain what it feels like to have responsibility for another person who does not strongly desire to assume that responsibility for themselves. I don’t know if I can ever explain it in such a way as to make those not a parent in this circumstance understand. But if I could do that, if anyone could do that, there would be change.

The ideas in these over written and much too long paragraphs fill me with such emotion. I am almost in tears, not quite understanding the reason. I can almost touch some conclusion. Almost. I am not there. Not yet.

2012-01-28T07:02:00.000-06:00

I grazed among my tasks for most of the day. Finally, beginning to unpack a box with thoughts of tackling more. I worked on the memoir -- easy work, formatting of pages and pages of blogging. And I picked up a book from last year and read a few chapters about one researcher’s experiments on monkeys (the work on animals is very hard for me to read.) to prove the plasticity of the brain. I lost myself in each task and could have spent the day doing each but the practicalities of the day and my own restlessness did not allow for that. I chaffed with the idea that I was not using my time efficiently, that I was flitting among my interests and tasks and not settling down to efficiently complete any one of them.

In the late afternoon while Julia was working with a therapist, I used the I Ching. I do not throw coins or yarrow sticks, instead I just asked my question and opened the book at random and read the paragraph under my finger. A great, old teacher of mine, Wilford Leach, who died of AIDS when it almost did not have a name, who, although I thought of as old, died at 58, which I now think of as . . . well, now, not old, just living, but two years older than David. Young almost. Will was so wise, but never got to be venerable. Anyway, Will told me about the I Ching. He did it in some master class, it was not a personal message. I wonder how many of us, his students, took everything he said as a personal message. He was that kind of a teacher. He told us about I Ching, that it always gave a correct answer to petty questions and those from the bottoms of our souls, and that it always gave the answer that the asker already knew. That if we were able, we could get the answer to our question looking deep inside, but as that was hard, maybe impossible for some of us, and we could use the I Ching.

I have used it now and again since that time, most of the time alone, sometimes with friends. Lisa gave me an excellent, newer translation of it by Carol Anthony and Hanna Moog which I slog through now and then, but often ask a question and open the book for an answer. Strangely, amazingly, almost magically, although I know it is none of those and I now expect that there will be an answer to what I ask.

And so, I asked for guidance for the immediate future. Where to put my energy and effort with the varied tasks that I have set for myself. I wanted to know exactly which task would bring me efficiently to some answer, some resolve, some enlightenment, some ending of this fallow year which is not even half over. And I opened the book, and put my finger on this paragraph:

“‘Plowing and clearing the ground’ refers to the inner undertakings that return a person to his original nature, allowing it more and more to express itself in its uniqueness. These undertakings consist in identifying and deprogramming prejudices, pre-structured views, and mistaken beliefs. The ground is not to be prepared for the planting of “good seeds,” as is done in positive thinking or imaging, or by introducing another belief system. Preparing the ground for peace, for example, does not mean praying for peace, as this would bypass seeking out and deprogramming the mistaken beliefs that foment and perpetuate war.

“Receiving this line counsels a person to examine his attitude toward his goal (the harvest), and to free it from any projection or spell put upon it by his egotistical demands.” (p. 237).”

The immediate reference to the land, the preparing of the ground, and the final direction to free myself from egotistical demands all made me smile. The answer was, of course, that there is no short cut in my fallow year, no way to get to the answer, the enlightenment, without the entire path being walked.

To myself, I whined for a bit about all of those friends and strangers who seemed to have found their direction, their guidance, their research project without so much of a process, but I didn’t even bother asking the I Ching about that one. I know what the answer is.

And I had a dream. I have been dreaming and remembering more frequently these days. Not every night, but many nights. I am enjoying this getting back to my sleep life. I actually decided on the shape of the light that I will buy for the dining room after one night’s dreaming. Surprising for me now a days, but quite the normal way to arrive at decisions in my younger years.

But last night, I dreamed of David’s voice. He told me that we, meaning everyone else except for him, had died, intimating that he was lonely, missing us all. I began to awaken and thought for a minute that, yes, we had all died, leaving him alone. Here and alone. But then I questioned who this “we” was. Me? Me and Julia? Me and Julia and Cheshire and Lisa and Nick and Jan and the list of friends and relatives and acquaintances and co-workers trailed on inside my head. No, it could not have been “us”, all of us who died, it was him. And I wonder about whether the dead, in the afterlife, not matter how heavenly, miss us, feel lonely. And I realized (although this is not quite the right word) that even if heaven was all learning and fulfillment (both of which would be ultimate joy to me) that David might still miss us and feel lonely because of that.

This was an instant thought, not pondered over. I was still mostly asleep and raised my head and turned to the bed stand as if to look at the clock (a movement which is almost instinctive with me) and there in shadow was David holding a bowl. It did not scare me or cause even an extra heart beat. I just accepted that he had been there, a bit lonely and wanting me to know that. I also accepted that what I saw was some shadow of furniture together with my night light (although a bit later when I was more fully awake and turned again to look for that combinations of shadows, I could not re-create what I had seen.). There was an ache in my shoulder, something very unusual for me in the morning, but an ache the kind of which I got now and then when I laid on my side in the crook of David’s arm for much too long a night.

I am not going to try to make sense of any of this. It is what it is -- some heavenly visitation, some part of me comforting another part, something from the outside, something from the inside. It does not matter. So, now, awake and typing, I send my love out to him who may be lonely because he has gone ahead, and maybe it is not ahead, but just away and not here. And that I am on some path, with tasks that he is not a part of and he is missing being included in my adventures. In the adventures of the “we” who are still here.

2012-01-27T08:37:00.001-06:00

I have just a few minutes before Julia needs to wake up for school. I have been going to bed with her in the evening, doing something on the computer when she falls asleep, and quickly going to sleep myself. So, it is true, early to bed, early to rise. Waking before 6 is easier and I have the energy to keep going throughout the day, but climbing into bed at a few minutes before 8 each night as we do to read before lights out, makes me feel like I am missing something. What? I have no idea.

Julia read her poem yesterday in front of her whole class plus a smattering of parents. She was the second one, chosen at random, to read her poem. She was scared and she missed some words, but she tried very hard to read with expression and she was very pleased to be clapped and snapped at when she finished. The kids learned that snapping fingers was a hip poetry thing from the 50‘s. Ancient history. When we got home from the clinic later last night and were walking the dog, I asked Julia about her experience. This is always a hard kind of conversation to have with Julia but we muddled through after I insisted on talking about the poetry reading a few times. Julia told me that she was a bit scared but that it was easy and really fun to get up and read her poem. Truly, that was what it looked like by the end of her reading. She gained more confidence as she read through her poem and the last few lines were done almost as well as she had done it for me the night before. Ah, those acting genes. . . wait, she doesn’t have my acting genes. Must be something in the very air we breathe.

I am a bit anxious to get on with the sorting. And good that I am feeling this way. I brought the sorted plastic boxes up to the dining room a few weeks ago now, and have not touched them since. Not good. Not good at all. Tuesday, when Ed was installing the last cabinet and mucking around in the basement, he noted that it was really clearing out. Well, yes, it looks cleared out because there are plastic storage boxes in the dining room but more dramatically, all the boxes of kitchen stuff have been put away. With the gaping hole in the middle of the basement where the kitchen boxes stood staring at me in the basement, I have had no inclination to investigate the periphery where much that is unsorted and/or long-stored stuff awaits. I am imagining that it is the tougher stuff to sort. What am I going to do with a box of old sheet music? It doesn’t make sense to save it but I hate getting rid of it. Why? Because . . . no good reason. Just because I’ve packed it up, probably most of it before law school, and carried it around ever since. Does Half Price Books take sheet music? It helped me to get rid of books taking them there. Not that there is any great money to be made selling to the store, but I know those books, some of which were very good books just not ones I was interested in, would find someone to buy them. I wonder if I could find a needy lounge singer in need of sheet music?

Julia has been put on the bus and I am drinking tea, eating my banana muffin and tapping away.

Yesterday, I tried writing a bit of fiction. I’ve had this fragment of a story cursing through my veins for a few weeks now. I’ve always had pieces of stories rumbling around inside of me. I go over the story to get myself to sleep. I day dream about it. Sometimes, I night dream about them. But when I write them down. Uck! I am clumsy and obvious and obtuse. Stories come out nothing at all like I imagined. And yet, here I write without pause. Like turning on a tap. Now, I am not saying that I am any Samuel Pepys, but this is easy and for once in my life, I am going to go with easy, and leave the impossibly difficult to someone else.

I’ve been messaging while I’ve been writing here with a friend and a sister, both of who, I just now realize, have changed their lives drastically in the last year or so. Both have done so a bit more of their own accord that I have, but I see that I have gathered around me some fellow travelers in change.

One describes a coming storm that looks to her list the start of creation. The other has drawn out in me what I’ve learned so far in this fallow year: patience and doing what comes naturally. I write: It is a delicate balance of moving on or forward and considering the lessons learned. I tend to tip in one direction or the other, the middle path, walking in the middle of the river is the challenge. Okay, so that sounds rather wise. Maybe I am learning.

2012-01-26T21:24:00.001-06:00

Finished kitchen pictures can be found here: http://acrosstherubricon.blogspot.com/. Big check mark on my to-do list for this fallow year.

2012-01-26T09:23:00.001-06:00

Julia’s class is having a poetry reading this afternoon. Julia was not expected to participate but she has been doing some of the writing prompts that that rest of the class has been working on and she wanted to read one of her “poems” just like the rest of the kids. I needed to do a quick rearrangement of our time, since Thursdays I usually take her out of school at 1:30 for attachment therapy, but all is done and I can’t wait to see her read with the rest of her class. Just before Christmas, I went into school and Julia read her favorite Chanukah book to the class. She did it quite by herself and she was very proud of herself. This is a new challenge since there will be lots of parents in attendance. Being like the other kids is such a strong motivating factor for Julia. She is so very lucky that she is fully integrated into a regular ed classroom. I think she would have a very different school experience if she was in a dedicated special ed classroom.

This is what she is reading today. This starts with the prompt, “I feel ___ when” with the blank filled in with a feeling. The students then filled in the space after the “when.” This is what Julia did:

I feel.

I feel happy when I play and draw pictures.

I feel sad when my mom leaves.

I feel shy when I’m afraid to talk to people.

I feel excited when I get a surprise.

I feel sorry when I hit someone. I better say Sorry!

I feel proud when I do good work.

I feel embarrassed when I fell on the floor.

I feel angry when I do not want to share.

I feel guilty when I make mom so mad.

I feel surprised when I won the surprise.

I feel afraid when I am by dogs.

I feel impatient when I’m waiting in line.

I feel jealous when I’m jealous of you, mom.

I feel hopeful when I’m nice to someone.

I feel confused when I get a little frustrated.

I feel hurt when someone hurts me.

I feel loved when I kiss my mom at home.

I feel.

I showed this to our therapy team and I will share it with Marilyn tomorrow. This is not only a poem but proof positive that Julia has learned a good deal about feelings. We all knew she was identifying feeling for awhile now but she was not connecting them with a reason. Some of her reasons in her poem are not the best choice, and a few are inappropriate but for the most part, they are dead on. This is a step towards reciprocal interaction. We have been practicing this at home and she reads it with such enthusiasm and feeling.

I had a meeting with our IDS psychologist who is the head of our therapy team. The next big goal involves teaching Julia more about conversation and interaction. Julia will have limited conversations; however, the conversation is on her terms. Asking her about something she is not interest at the moment or trying to change the conversation from her interest to your interest is near impossible. She insists on her topic (which inevitably gets around to dinosaurs and who is eating who, especially when she is feeling stressed) and pays no attention to yours. She will ask questions but they are usually not helpful to continuing the conversation in depth, but rather the questions check how the person she is talking to is feeling. She does not really check on that person’s face to see if she can figure out how they are feeling. She will ask, “are you angry?,” “are you frustrated,” “is that right?,” etc. And she will ask it over and over. This is, at the least annoying and stops any forward movement of the conversation dead in its tracks. And although a grownup, especially a professional grownup (teacher, therapist, etc.) will engage with Julia further, many kids just give up and move on.

So, for Julia conversation is for finding out what she wants to know or telling you what she knows. It is not for building interaction and fostering friendship.

John Elder Robinson, author of “look me in the eye”, “got it” when he was 9. Up to that time, he explains that her was so used to living in his own world that he answered a conversation starter or a question with whatever he had been thinking at that moment. He was responding which in his mind should have indicated that he had been listening, but his response made no sense to the person speaking to him. He says, “I suddenly realized that when a kid said, “Look at my Tonka truck,” he expected an answer that made sense in the context of what he had said.”

When I first read Robinson’s book, Julia was so far from even responding to other people that his nine year old revelation seemed impossible. I still don’t really know how it is going to happen, or how to guide her to this revelation, but WOW, if she got it, it would change her world. And amazingly, this is a next step for Julia. Not an easy one. And I expect, not a quick one. Huge, slow step, but still it is next.

Julia has learned to greet her therapists and say good bye to them when they leave. She has learned to ask them how they are when they come, and even sometimes to remember something about them. “How is your brother?” “Is your car fixed?” She has learned to ask when they will come back, and then will say, “So, see you on Tuesday.” She is generalizing some of this to school. This seemed almost impossible a year ago. And so, we teach her more.

Oh, how much that child would enjoy really talking to another kid! I know that she would. Now, just to convince her that I/we have the keys to that kingdom, that if she follows our lead, she can make peer friends.

2012-01-24T22:00:00.001-06:00

I finally found a use for pinterest (and I’ll send an invitation to anyone who has not tried it). I mean, it is fun to scan through thousands of pictures and pick favorites. An incredibly fun time waster -- an I am not in any way a shopper! But what a great tool for gathering ideas and comparing products found all over the web. I am looking for a dining room “chandelier.” I put the quotes around the word because the word still conjures up the crystal dripping lights that my mother loved. I have nothing against crystal fanciness, but this little house just could not support such a fantasy.

The original plan was to put the Delft chandelier from David’s father’s house in our dining room when Dad sold the house. It was a smallish chandelier, very plain and in fall colors, not the traditional Delft blue, that David’s mother carried back from Holland when they travelled on vacation. David always wanted the chandelier one day and although I was not an immediate fan, I planned every dining room that we’ve lived in, growing used to the idea as we went from house to house -- yes, that is how long David’s father had been “threatening” to sell his Jersey house. We were only getting the chandelier once the house was sold. But this summer when the house was sold after Dad died, no one mentioned to the selling agent that there was family that wanted the chandelier and it was sold with the house.

And right now, in my dining room there is a very useful ceiling fan with four ugly spot lights hanging off of it. The identical light is in the kitchen and the living room. Removing the spot lights in the kitchen improved the look of the fan. I need some general light in the living room and so will look for another fixture to attach to the fan, but in the dining room, I want just some other kind of light. Something pretty. And that is where pinterest comes in.

I have been looking all over the web for an interesting and affordable chandelier and as I find ideas (which tend to be either interesting OR affordable), I can “pin” them to one of my boards. (I am not going to try to explain the site, but check out pinterest.com if you want to add a new addiction to your list.) Now, I have a host of lights to look at together.

Usefulness, efficiency, and addicting - - - maybe not so bad.

Ed came by today and put in the last cabinet. The kitchen is finished! I will post pictures in the Home blog.

Yesterday was lovely. Lisa called, as did Marcia and Cheshire. Many friends wished me happy’s on face book. Amy dropped off a little cake from Whole Foods and somehow that little cake is going to last all week. It is a tall little cake. And delicious. Julia is getting to be more and more and more a cake eater. Last week, carrot. This week, chocolate. And Amy dropped off a very cute cook book holder which is actually my first decoration for the kitchen. Finally, Mary and Robert took me to dinner. A sitter put Julia to bed. What a nice birthday. And yet, to have a good time, a good day, I need to lean heavily on my village. A whole village’s worth of people to make up for the attention of a single partner. But then again, thank goodness, for that village. How would I survive without it?

2012-01-23T03:32:00.002-06:00

My own new year. Chinese New Year. Cheshire’s first day of NYU for her Masters of Social Work. A very auspicious day indeed.

Cheshire’s enthusiasm about her new venture, about returning to school, about her life as she is living it now is palpable. It is infectious and just a little bit of it catches me up as I talk to her. I am in deep envy. I long for such enthusiasm myself, but I am in the middle where she has found an end and a beginning. I know. I know. Patience and steadfast work are the keys. Both are a challenge but both are within my own possibilities.

I am impatient to see what lies ahead. So impatient. I want to peek around the corner and must be content to know that today is what I have and what I can do.

My New Year’s cards are all sent. A few recipients have emailed to me their thanks and so I know they are getting where they should. The message on the back of the card has become David’s last message to me, and from me to my friends.

“Just suppose you are now doing and have been doing for quite a while exactly what it is you are supposed to be doing.”

It is from his final theater piece, “An Evening with Jon Jones,” finished in June of 2010 and performed last February as part of Forward Theater’s monologue festival. I should have it embroidered on a pillow or stenciled on the wall. It was Jim Jones’ message, and it took Jon and David and I so long to understand it. In the piece, Jon grows to understand it, and although I really don’t know if Jon really understood it, I feel that David felt the wisdom of the sentiment deeply. I struggle with the now, have gotten close to it time and again, have run smack up against it on occasion.

Part of this new year and my fallow year is a dedication of my soul to the now. Every teacher I have right now urges me on.

Chinese New Year party with MFCC

2012-01-22T17:54:00.002-06:00

A pause during decorating.

Arts & Crafts

Julia in shadow.

My own spicy dragon at the beginning of the year of the dragon.

2012-01-22T13:27:00.001-06:00

So we went to the Chinese New Year party and both of us had a tough social time. It was one of those days that it was impossible for me to talk to anyone -- could have really used someone who was so wrapped up in themselves that they talked to me non-stop without asking a single question. Unfortunately, I did not bump into that person.

I did chat with two people I know from school, but I was awkward and felt like I was running out of things to say, questions to ask. There was a time when I was this way all the time. It was my brand of being shy. It was not that I didn’t want to meet and talk to people, but I had no idea of what to say. More importantly, what to ask. With David, who was also not a party animal, we hung together. We were an insular whole. We did not make new friends when we went on vacation; we could live without neighbors.

Slowly, I changed, never becoming a brilliant conversationalist but I could be very friendly. I could talk to people almost anywhere and be very presentable. And although parties where I and/or we knew no one could still be a challenge, I seemed to be past my very awkward stage.

And I would say that I’ve been pushed back or entered a new phase of awkward. Nothing to say. No questions come to mind. I am forced and strained. I do not keep up with current events. I have no job to talk or complain about. Fallow year activities do not yield interesting anecdotes. At least, not right now. I do hope this passes and that I find my friendly bones again, but for now, I have no choice but to dig in and be the lone stranger who wanders a cocktail party looking for all the world like they wish the earth would swallow them whole.

As for Julia, well, she is my partner in awkwardness although hers takes a completely different form. As we approached the high school where the party was to be held, I tell her to be friendly, to pay attention and answer questions when other people ask. We go over her basic facts: name, age, where we live, what school she goes to, what grade she is in, and the name of her teacher. And we rehearse, “Happy New Year.”

The school was laid out with a central plaza/cafeteria/gathering place right inside of the front door. We went early to help with decorations and as soon as Julia entered the building she spotted a basketball team sitting on the steps down to the plaza. “Hello, boys!” She called. “Happy New Year! My name is Julia.” They were all very amused. Oh, well, awkward in a whole new way.

Julia is trying to socialize, but she does it with statements, not questions. At the arts & crafts tables, she creates cool stuff and then asks the person next to her if they life her work. Some grownups accommodate her. Some get it immediately and draw her out a bit. Usually, until she turns her attention elsewhere, which tends to be when the grownup wants to take a turn at asking a question or saying an original thought. Some let her stay on her topic which inevitably gets to dinosaurs. Some just look confused. Kids are not as kind. But Julia tries. She tries all the time. It will not be easy for her to learn to socialize but if she wants friends enough, she will learn it.

We both need to practice asking questions. Ummm . . .

And so mother with no questions and daughter with few interests decorated before the crowd arrived. Julia is getting better at staying on task when I give her a task. She tied ribbon around balloons and then tied the balloons around railings for about 35 minutes. I had to remind her at times to stay on task and she was slow at it, but I don’t know if she was slower than any other 11 year old, and truth be told, no other kid was there helping with decorations.

Julia wore ear plugs so that she could stand the loud music the accompanied the dance groups -- little girls in pretty costumes fluttering about an open space -- and the lion dancers which was a mix of adults and kids from a karate club in town. Julia knew one of the lion dancers who was the head of one of the fierce lions. She was so happy to put her red envelop in that lion’s mouth. Julia spent most of the performance on my lap which is always fine with me, but of course, if more appropriate for a 5 or six year old than for an 11 year old.

There is some ego stuff working, and some mama bear protection, but we went, we hung out, we did crafts and we fed the dancing lions for good luck.

Happy year of the dragon!

21 January 2012

2012-01-22T09:12:00.000-06:00

It is a blue-sky-bright-sun day in Madison, the kind of day that follows a heavy snow storm and frankly, it is quite a saving grace of the intense cold the finds every crack and crevice in an old house. Yesterday, during the afternoon and evening storm, I pulled down all of the shades to hold in the heat and keep up the cold, but this morning, cold or not, shades are up and the sun is pouring in.

It is cold. I went out and blew snow and salted walkways and the driveway. Julia and I are going to celebrate Chinese New Year this afternoon with our local FCC -- Families with Chinese Children. It is a group that I have felt not fully comfortable with from time to time. Most of the kids were adopted as babies and the kids Julia’s age are fundamentally American kids. There are very few kids with disabilities of any sort and I have felt an undercurrent of distain for Julia’s challenges. I fully acknowledge that it may be mostly me, a bit of paranoia, a bit of shyness, and so, we will try again. The woman who is running the group now goes to my church and we’ve talked often. I have volunteered us to decorate before the party -- give me a task and I will make myself at home. And I am pretty good at setting up almost anything. Julia has a dragon shirt that Santa brought her and she asked for “Chinese hair,” which is such a throw back to our early days together. She wanted her hair done up and with ribbons and decorations. She was speaking very limited English but she told me that girls with fancy hair had mothers, and she wanted to look like she had a mother. I wonder where she saw that -- it was somewhere in China because she had not been home long enough to see girls with “fancy hair” here, and what she wanted was little buns with as many decorations on them as could be fit. Hair spray is essential for this endeavor and patience in the bathroom as I fumble around with elastics and pins. Julia has always had the patience to let me spend as much times a necessary, even in those tough early days.

Hopefully, there will be pictures.

The other day when Julia and I were doing our morning strong sitting, she turned to me and said, “I am bored.” When I said my usual, “Quiet in body and mind,” she muttered to herself, “This is so boring.” I wanted to giggle, I wanted to hug her. Such an appropriate reaction to meditation! We have been sitting for 15 minutes every morning before the school bus comes since the beginning of the school year. Julia has shown her monkey mind and monkey body, but she has never told me that she was bored. Of course! We are all bored during meditation sometimes. Maybe she is getting closer to meditation than I thought. I assumed that she was filling her mind with dinosaur stories as we sat there together, maybe she is listening to me and quieting her mind. I do wish I had someone to call and ask what I should do for and with her now.

When the student is ready . . . maybe we are ready . . .

2012-01-20T16:46:00.002-06:00

I went to Julia’s annual IEP meeting. IEP is Individual Education Plan which is done yearly for kids who receive special education. This is my fourth meeting and after each one, I am always ready do fall on my knees and kiss the ground that her teachers walk. Yes, Madison schools, at least the ones Julia goes to, are that good.

For the first time, Julia has met and exceeded every one of her IEP goals. Now, after her Kindergarten and First grade years, those goals are pretty modest, but for K, First and Second grades, she had goals carried over year to year. She still needs a lot of support and this year so much time has been devoted to dealing with her skin, but still there are gains across the board in every subject and in her social development. Next year, for the first time, there will not be behavioral plan for Julia’s bad behavior because bad behavior is something that she no long exhibits at school. There will be no behavioral goals because she doesn’t need any. Just typing this, I tear up. Four years ago, I didn’t think this time would come. I had no idea that there would be whole days, whole weeks, whole months and semesters even when no one from school would call to talk about Julia’s behavior that day. We do not have behavior charts that comes home with sad faces. We do not have behavior charts at all. And school is a wonderful reason to wake up early when the bed is warm and my girl would really like to sleep for another hour or two.

I officially asked for Julia to repeat fourth grade. I’ve mentioned it to her special ed teacher and chatted with the principal about it, but this was official. The responses were immediate and without hesitation. Her classroom teacher said that she wanted to retain Julia in her room (which is not normal procedure for kids repeating a grade but will benefit Julia incredibly!). Her special ed teacher, said with undisclosed glee, “I get to have Julia for an extra year!” The other thing that was said was that there would be disappointed fifth grade teachers next year. There can be no final decision about repeating a grade until closer to the end of the school year, but barring great changes of one sort or the other, Julia will stay at Randall School for an extra year.

Just wow! If I was one to believe in an micromanaging god, I would be more than sure that Madison had been hand picked for us, and when David got the call from the Madison Chief Justice offering him the job weeks before he got a similar call from a judge in Brooklyn, that there was divine guidance. And to be serious, I can believe that the Universe, that some divine being, just nudged our decision just a little and just to make what would be such challenging years for me, just a wee bit easier for us. And of course, it is not that I did not research Madison and schools and neighborhood, and not that I didn’t pick the particular school that she goes to, but chance, as well as divine intervention, favor the well prepared.

One of the things that has been devised for Julia this year is Julia’s Art Club. Most every week, Julia picks four kids from her class who have previously expressed interest in doing art with her, issues invitations at the beginning of the day, and during recess the five of them go to the art room and draw. They are given a set amount of time to draw and then time to show their drawings and comment about the drawings. Julia leads the discussion (with some help) and there are actually kids who like to sit next to Julia and watch her so that they can draw like she does. Julia then thanks everyone for coming and helps all the kids clean up. Again, it is with some prompting and help, but what a way to have a social group. How perfect is this for Julia who does not read at grade level yet be the leader in something that she does above grade level.

Listening to NPR as I was chopping garlic, an interview of a film maker who has made a fictional movie about the Bayaka pygmies and the ethnomusicologist who lived with them. What struck a chord with me was the that the words for singing and dancing for these people is the same word. They sing and dance a lot, close to all the time. Everyone does it and everyone makes original music and dance as well as singing the songs and dancing dances that have been passed down to them. What does it feel like to grow up in such a society? Dance and song the same word!

James Taylor singing Up On the Roof on pandora and I sing a few words and move from the inside out. The same word. The same word! What a wonder that would be.

When Cheshire went to Sycamore School, she had music every day as part of the school day. She played in a school band, carried one, sometimes two instruments every day into school to practice and perform with her friends.

She had music homework that was as important as math and history. It was, sort of, the bonus of going to a private gifted school, the fortunate circumstance of a brilliant music teacher who helped devise the original curriculum for the school, who believed that all kids could play and learn to play together. It was such a gift to Cheshire who loved music from very little on and it taught her so many things outside of playing and performing.

What music did for Cheshire, graphic art may do for Julia. How incredible that would be.

2012-01-19T10:07:00.002-06:00

In the middle of the night

Miss Clavel turned on her light

and said, "Something is not right!"

~Ludwig Bemelman, Madeline

My favorite picture from Bemelman’s classic story is of Miss Clavel rushing to the girls’ dorm room at a 45 degree angled run to take care of whatever was “not right.” My own Miss Clavel came rushing over to let me know that “something is not right!” Mary came over for tea and to post the warning that I may be leaning too far over that pit of despair.

Stepping away from the fact that it is me and I am quite miserable a lot of the time, it is quite a curious situation. I am spending my time this year, at least in part, being as reflective as I can be about my life changes. Intentionally, I am working through my great loss. I am cleaning house inside and out. I am steadfastly facing the storm with the hope that I can incorporate, process, and integrate the past and present to arrive at a . . . nor normal or not where I was before David died, but a new wholeness of spirit.

But doing this stuff makes me sad. I am utterly lonely and pretty miserable a lot of the time. Of course it does. But am I too sad? Am I tipping into depression, a physical depression that I should not try to cope with alone. How much is too much?

I argued with Mary. It was, I fear, a reluctance to consider a therapist, another doctor to explain something to. It is not a reluctance to let someone else into my world -- I write here. But it is a reluctance to need to explain my story. I have been explaining Julia’s story for a long time now and it is exhausting. I am tired of it. Every new therapist the medical practitioner needs to hear enough to help. I am burned out with explanation. The recent pediatric dermatologist visit left such a sour taste in my mouth. And when I thought, albeit briefly, about what I would say to a mental health practitioner -- dead husband, autistic child, lack of direction and vocation, and winter -- well, who wouldn’t be depressed.

But not one to look a gift horse in the mouth -- I just love that saying. Such a visual! -- and knowing and respecting Mary’s love and experience, I called my doctor’s office yesterday. The practice has at least two behavioral care providers on staff and available for appointments without referrals. I needed to start somewhere. The practice also has a few days a week when there are same day appointments which are kept open, usually for emergency and as it turned out there was one about an hour after I called. Not an emergency but no one else took that time.

So, I went.

I have had some issues with my doctor’s practice from time to time, but yesterday, I was impressed. I counselor/doc that I saw had actually read my file before I got there, so my big qualm was taken care of. I could begin in medias res. When I was able to quantify my concerns, I isolated my reasons for taking Mary seriously:

I feel no joy in my life. It is especially apparent when doing things that have brought be joy in the past.
I do not have the patience that I need when I am parenting Julia. I grow frustrated and irritable much too quickly.
I have a lot of interrupted sleep.

I would live with the first and third, but the second is too important to me not to do everything I can to do a better job parenting Julia.

The counselor made some suggestions -- a parenting journal, working on acceptance of my limitations as a single parent, as well as noting that I was priming the pump to raise my spirits -- exercise, meditation, writing -- and functioning pretty well. He also suggested that I may have fallen into depression and advised some medication. He offered that I should think about whether I wanted to go down that path right now, but I explained that I am not about prolonging this process any longer than necessary. If I need a medical kick in the pants, then I do. And the prescription is waiting at the pharmacy.

I will be talking to my doc in the next two weeks and may still want a referral to be able to see a counselor often. And although, I was ornery with Mary when she brought up the subject, it all seems so perfect right now. Yes, I needed some help. I have just started figuring out what that help is. And I am so very fortunate to have a friend who loves me enough to notice how far I had leaned. Thank you, Mary.

2012-01-18T04:07:00.001-06:00

Going to bed early and exhausted does not guarantee a whole night's sleep.

Damn.

Frog cupcakes for class

2012-01-18T03:44:00.000-06:00

Dinosaur birthday cake

2012-01-18T03:35:00.000-06:00

Birthday presents

2012-01-18T03:20:00.002-06:00

2012-01-16T21:42:00.000-06:00

Hitting the wall today. I find it very hard to even write full knowing that I’ve said the same things before. How many times? But also that the writing doesn’t really help. It is a spilling of the contents of my brain and heart but the well simply fills up again. Pain, grief, loneliness. The pit of despair.

Today is Julia’s birthday.

I did not plan well. Did not feel like planning and could not move myself to insist on planning. Is it the lack of planning that began my downward spiral or would I have been skinny dipping in despair with the most elaborate plans?

I did not plan a party for Julia. Did not do the work necessary to get a few kids together. I tried. Lamely, at best. Oh, I talked to one of my friends with kids to see if they could come over, suggesting a late breakfast, brunch kind of thing. She had her own things going on, but more importantly, I did not say, really, please, I need to have something planned for Julia and I was hoping for your help to kick my ass in gear. Had I asked for that kind of help . . .

I did not.

And I did call another friend with the suggestion that we have a “family” birthday dinner. But I called late and did not follow up with a second call. She just called back today.

And my mind goes back -- slammed back is a more accurate description -- to two years ago. David’s first hospitalization, the planned party for Julia that one of her therapists helped me with because David was in the hospital, the saving of a few last presents and some cake that we took to the hospital to open and eat with Daddy. To include him because . . . well, not because this was Julia’s last birthday with her Daddy. I was hanging on to the family life I wanted her to have. I was insisting on it.

Now, I think of it as the beginning of our staunchly brave period. We were in fight mode. We were going to beat this thing and live a wonderful life. Happily ever after.

Oh, god, I think I wrote all of this last year. I am not going to check but I know that I was in a tail spin around Julia’s birthday after have a pretty good Christmas holiday and new years.

Forgive repetition.

These are/were our private holidays. It was never sad or depressing to make a cake, have a special dinner, light candles and sing with three of us. We did it countless times for Cheshire and it is so very okay for Julia. But the two of us? It feels utterly depressing and lonely to have Julia’s birthday alone with her.

Julia has a lot of therapy today. A day off usually means getting in extra hours to make up for missed sessions on other days or to pad the hours a bit in the beginning of a month -- we need too meet our therapy hours each month. So, I brought the cake to our therapy team meeting. Julia was thrilled. We wore hate and sang to her. We ate cake. And Julia loved the carrot cake.

And now, I am home, she at therapy. I am icing 28 cupcakes for tomorrow.

Much later.

Julia and I are in bed. I’m waiting for her to fall asleep. She said she had a wonderful birthday, maybe her best one yet. I am going to take that at face value. Appreciate that she had a good day, a good weekend, and move on.

Two years ago, after David was released from the hospital, we began to have a visiting nurse come three times a week to check on the pump that delivered drugs constantly and straight into his heart. This was the procedure and the medication that kept his heart going from January until March. So, along with the therapists who were in the house for Julia every day after school, there was now a nurse coming around super time to change lines and batteries and check on the pump. The front door was unlocked and people knocked and came through. Those were days when Julia’s behavior with her therapists could be quite challenging. She could be loud, she could oppositional. Another person with another set of priorities and another set of tasks added to the chaos.

But after the therapists left and after the nurse left, the three of us would set down for dinner. I don’t remember it as straining to keep our life normal but now when I think of it I cannot see it any other way. I see it as fighting for our normal, as finding new normal, as taking it all in, in big gulps, and insisting that everything but that dinner at the end of the day would disappear in time and we would get back to our dream of a normal family life.

And now, I am so far from that dream that it seems impossible that we lived it for so long and also that we could have expected return. Again. We did not understand how changed we were. There was a cognitive dissonance, or rather I was not aware of the cognitive dissonance that was entering the carefully constructed and maintained box which was our family life.

In the Wikipedia definition of cognitive dissonance, it says “Cognitive disequilibrium is a closely related concept in the cognitive developmental theory of Jean Piaget: the inevitable conflicts a child experiences between current beliefs and new information will lead to disequilibrium, which in turn motivates the child's progress through the various stages of development.” This explains what I am perceiving about that time even better. And I am hoping that the subsequent disequilibrium that surfaces from time to time these days will motivate my progress through my own further development.

And just to note, what pulled me out of my pit, was a phone call, talking with Amy. Just letting the self-pity overflow and venting some and having a friend be there, commiserate some, share a bit of her day, and listen.

The pit is filled in for today; the boat righted. And now, on.

2012-01-14T07:56:00.000-06:00

My eyes opened at 6. I turned over and gathered Julia into my arms. An early morning snuggle. “Do you want to snuggle?” I whispered and Julia, still mostly asleep, rearranged herself to accommodate my arm across her upper body and tangle her legs with mine. Julia promptly fell back into deep sleepy breathing. I dozed and my mind started to take over the light sleep.

“Do you want to snuggle?” That was the question David or I would ask in the morning. The first one to reach partial wakefulness would ask the other and we would rearrange ourselves and the covers to lie together. He on his back, me in the crook on his arm. And we would doze, or fall back to sleep, or wake up and chat until some alarm or a child or the doings of the day caused us to stir. Have I asked that question of Julia before? I don’t remember. I don’t think so. And this memory does not come with pain. Missing. Nostalgia, but not pain.

Two days ago, I had 672 messages in my email inbox. I am someone who used to have no more than 100 messages, preferably about 50 which were all current and awaiting action. I used to read, delete, file, or reply. And looking through last night I found so many that I wanted to answer one, two, three, or five months ago. I have become an awful correspondent. There are emails from people that I meant to get back to, wanted to get back to, and should have gotten back to. There are invitations to “find time for tea.” There are answers to queries that I put out and then never responded to. I’ve been in this position more than once since David died. I clean out and sort out my correspondence and then plunge back into chaos. How many more times? And I so hope to become more like the very good email correspondent that I was. But hoe long ago was that? At the bottom of the email pile are two emails from David written just a month before her died. They are like the sweater hanging in the closet that the widow doesn’t get rid of. Very casual. They say nothing of import. Like that sweater that another widow might open the closet and push her nose into to try to remember the scent of her beloved, I open those emails from time to time to read, “Tuesday works for me,” or “you might want to put this in your favorites.”

Julia went to school yesterday with 9 bandaids. A new low for her. Progress comes very slowly, but the torture is mitigated by the knowledge that Julia has a condition, albeit one that is not fully understood. I doubt that the fact helps her. This week, she experienced a definite part of the cycle of the sores. I’ve noticed it before but could not put it into some order, and I do wish that the unsatisfying doctor experience could have explained what I see now as a cycle. The sores do not proceed like a wound or bit that is healing, that is from irritated skin to quieter and quieter scab which eventually falls off when the skin is sufficiently healed underneath.

Instead, there is an eruption time, when the sore looks almost bloody raw. I think this is when the individual sore is most itchy. When Julia was scratching insistently, she would scratch off the top of the sore and the sore would get bigger eventually bleeding underneath the skin to form a bruise. Each sore got bigger and bigger and sometimes looked like one was joined to another.

When she lets them alone, like she is doing now, the raw and bloody sore seems to calm down after a few days and the skin begins to close from the outside in. The itching decreases and slowly the outside of the circle of sore comes together and forms a red pimple (for lack of a better descriptive word). This pimple will eventually form a white top. This too is itchy and scratching the top off of this part of the sore seems to put the sore on another path of healing, one that needs to go back to the inflamed bloody sore again and the pimple before beginning to shrink and heal. I don’t know what or how the pimple begins to shrink and become a pinhead or small mark on the skin for another few weeks before beginning to disappear. I don’t know what breaks the cycle, but the hard pimples have erupted over and over. I know the steroid cream has helped push some of the sores into real healing, but not all of them.

So much for my description of physical healing. Now if I could get on to the heart and soul healing. Should I be seeing metaphors?

Chinese New Year cards have finally arrived and I will be getting them out this week. I opted for commemorating out last winter holiday with cards for friends and relatives so that I could put posed family pictures on the cards. My dear friend, Amy, who is a professional photographer took pictures of of the three of us when Cheshire was home. At that point, Christmas, Chanukah, or New Year cards would have only been very late, but Chinese New Year cards could still be on time, so why not? And there is a picture of all three of us which Cheshire complained I never send out. Not to print address labels, assemble, stamp and send.

Julia is awake and asking about the pictures hung behind by headboard. I think it is time for showers and waffles and walking the dog before our first therapist of the day comes.

2012-01-13T14:11:00.000-06:00

Started later on Thursday evening and finished on Friday.

The snow continues but this is Wisconsin. Typing that twice -- “this is Wisconsin” -- in a matter of a few hours. It is cold and rather disgusting out side. I’ve stayed in the same neighborhood as the clinic that Julia attends on Thursdays after attachment therapy. The Y is close by as is a grocery store. I shop. I work out hard for the first time since Christmas. I have lost ground in my routine but not so much. The work out tires me out but it does not bore me. I am appreciating my iphone’s ability to grab my favorite podcasts. The New Yorker in my ears can get me through boring exercises with ease. And I just want to be home. Cold. Tired now. How did I ever do this last year when I was so fragile? I am grateful for the mild winter weather that we’ve had so far this season. It has helped me feel strong, helped me find strength. Maybe the next few months will be easier for it.

At attachment therapy today, Julia drew in the workbook about the people who took care of her in the orphanage. Julia drew a man which is unusual in itself since from what I know of her orphanages, the Ayis or nurses are all women. Julia talked about someone who took her on his lap and tickled her on her stomach -- she absolutely hates tickling. She was angry with this man and talked about how she kicked him and wanted to hurt him. She could not or would not say explain a lot about her anger. She says that this man took care of her and went away and came back again. He talked about how she wanted to hurt him again. We -- Marilyn and I -- tried not to put words in her mouth, not to shape the story. No leading questions! And man, is that hard! And so, it is hard to get every bit of the story that she remembers. We cannot scrape up the bits to make the gravy.

Julia has done and said other things since I’ve know her which have led me to believe that she might have been abused, but never this close. She has always been very private with her private parts. More so than most 5 year olds when she came to us, but I wasn’t sure if that was a sign of anything or if it was just coming into family intimacy so late. I’ve never pushed her to allow me to clean her when I thought she did not do a thorough job or show me something that hurt when the hurt was somewhere private. In the past few months, with her skin condition, she has allowed me a great deal of access to her body, any and all parts of it. Trust? Or surrender? She had no control over what was happening to her body. Of course, neither did I. Could it be that she was so bothered by the itch, so much at her wits‘ end that any comfort that I might offer, be it washing, applying creams, or spraying was . . . not exactly welcomed, but tolerated. Was she asking to be healed in every way that she could? Was she just hoping that I had some power to heal her?

This line of thought makes me realize how much more trusting she has become. She will still ask me not to hurt her -- taking off bandaids can hurt, combing hair can hurt -- but she no longer pulls away like she did for a long time after coming home. She will also say now, “you love my body, right?” And I tell her the I love it and that my job is to take care of her body until she is 18. She likes this. In our loving kindness meditation, she regularly asks me to say, may you heal.

May you be safe,

May you be happy,

May you be healthy,

May you heal,

May you live with care, with me, forever.

The “with me” and “forever” are also her additions. These words are very powerful for her. And for me.

Back to her telling at Marilyn’s. Julia adored David. She enjoyed having a Daddy a great deal, but when she plays families with her dinosaurs, it is almost always the mommies that take care of the babies and little children. I think that caregiving is for mommies in her imagination. This also makes me believe her story is real. Another thing that I just remembered -- When Marilyn gave her the instruction of what to draw (and this is part of a trauma workbook for kids), she asked her to draw the person who took care of her in the first three years of her life. Julia said, “you mean the father”, which Marilyn and I took to mean her birth father because she had just finished a section in which she imagined her birth mother and father. I said, not your father, but the Ayis in the orphanage. Julia then immediately started drawing a man with a baby. She drew over that picture of the baby on the man’s lap, replacing the baby with a young child who was very angry and trying very hard to get away from the man. Julia’s drawing leaves no doubt that she did not like this person. The child trying to get away from the man is angry, scared, insanely moving her limbs.

But now that I think of it, maybe I should not have told her that we wanted her to draw the Ayis and not her father. I have Julia’s file which says she was abandoned at 10 days old, so logically the person she drew could not have been her father, but of course, so little in her file is true, there is no reason to believe that even that fact is true. She might not have been abandoned until she was 2 or 3. I know she was in the orphanage by the time she was 4.5 because we have a picture of her from that time. So, even in trying not to influence or change her story, I might have done just that.

This dealing with half formed, half remembered, snippets of memory grows more complicated and elusive every time I consider it. The possibilities, the teasing out of stories, are almost endless.

2012-01-12T08:37:00.001-06:00

When we woke up this morning, I immediately checked the street and they were still dry, but by bus time, there was a thin coat of snow everywhere and an hour later the roads are covering nicely. We are seriously into winter. Yesterday was incredibly warm -- heavy sweater weather and people were worrying about bulb plants coming up but today winter has a hold of us with a vengeance.

Of course, I did not put Julia is snow boots this morning. She didn’t need them when she left for school. She will by the end of the school day.

I spent a chunk of yesterday formatting and then reading the blog for September 2011, starting work on the writing project. Cold, sweat time. I have no idea what I am doing. No idea of how to start. How many times have I felt like this? Every time a new project begins! I can remember having similar feelings when pulling a new case at work. Reading a social security denial, wondering not exactly where to begin but what the end should be. trying to push through to the meat as quickly as possible. I don’t need to be as quickly as possible now but I strain to see some vision

Using the excellent pretense that I needed to find some paperwork for Cheshire to give her dates in order to fill out forms, I started bringing storage boxes upstairs to the dining room. The sorting needs to begin again if I am going to finish it by the end of the school year. And yet, I have not plunged full speed ahead because I’ve found plenty to do and because I love the sleek emptiness of the house put away. Kitchen stuff in the kitchen, a rather bare dining room that is easy to walk through and use, and a cozy but orderly living room. And the basement once again looks like there are too many boxes ever to wrangle. But. But. But. I hauled plastic storage boxes with appropriate labels upstairs and found the paperwork that Cheshire needed. Not to being more sorting. Trying for an objective look at the basement, it is less filled with junk! But there is still way too much to be happy with and way too much that is unorganized and unusable.

On Monday, I delivered two less than full boxes of film books to the second hand book store. They paid me $15 for some very interesting film books that I will never use and that I could not give away to my young film-studying friends. The woman who estimated and gave me the receipt commented that I have many interesting books in those boxes. I said, “yes.” I just didn’t want to engage in the conversation of dead-husband-film-student-and-teacher. It was not that I was too sad to do so, I have been talking about David very casually recently, but right then I did not want to spread the sorrow. Why tell a perfect stranger who looked liked she was having a very nice day that these books belonged to my dead best friend who adored film? I could not.

The snow continues. Fine. Steady. I have to drive boots over to school for Julia. I may have forgotten boots but I did prepare by filling the snow blower up with the gas/oil mix that it needs and making sure it started. Thank goodness for electric starters! And the car was in the garage last night, although any driving and parking today will necessitate cleaning off the car. Umm. I better do the quick grocery store stop for milk and a new bag of rice as well. Just in case. This is Wisconsin.

School email today

2012-01-10T15:41:00.001-06:00

Hi Deb,

Julia has a few very itchy spots this morning on her right leg and on her right wrist. I've band aided and bandaged both places at her request. I am so pleased that she is taking responsibility for pointing out exactly what itches and what will help her. Of course, this ability comes with experience and also with some healing of some of the sores around those that are very itchy today. I put her ointment in her backpack, but could you make sure it comes home. There is another tin around the house but we've lost it at present. I will buy another tin within the next few days but for now, I only have one working tin.

Do you know if there are any plans to celebrate or noting of Chinese New Year? I would be happy to pull something together if Beth wants to do something. Julia has her special year of the dragon red shirt on today. This coming year is special for Julia because she was born in the year of the dragon. Of course, if there is no time for noting the Lunar New Year, I completely understand. We will do plenty at home and with our local adoption support group. I just thought I would offer.

Hope Julia can make it through the day today! She wants to.

______

Hi Suzanne,

I forwarded the email to Beth so that she could respond to you about the Chinese New Year. I am not sure of the plans yet. Julia had a really good day! She had no chances taken. Mrs. Foster helped her put some ointment mid-morning. I am not sure if I told you this, but Victoria Storck is gone for a month due to a surgery and recovering. We have a sub who will be here during that time. Julia seemed to work well with her today. Her name is Mrs. Fisher.

She was really engaged in math. I can send a copy on Friday of some of the different things we are doing in math this week. Like you, I think I was also concerned with the picking most of all, so keeping her occupied was more the focus then the math. Now we are trying some new things. Do you have Chutes and Ladders game at home? That can be a fun review of counting.

Today in reading, she practiced reading an easier book independently and stopping at the sticky notes to answer wh- questions. She did that much more independently today, she just needed a few cues to look at the sticky note. She did a great job answering the questions.

In writing, we are learning about poetry. Julia had fun reading and listening to poems with Ms. Fisher and another student.

Thanks,
Deb

2012-01-10T14:02:00.001-06:00

“All great changes are preceded by chaos.” -Deepak Chopra

Thank you, Deepak. It is 1:00 pm and I have been trying, obviously not very hard, to get to this and to the tasks at hand since 7 when I saw Julia off. Since that is not true, not really, because if I had wanted to I could have sat down at 7:00 and started typing. Instead, I cleared the kitchen for Ed to come over and work, put in a load of clothes to wash, straightened up the downstairs for therapy this afternoon, texted with Cheshire and found some information that she needed by Friday, had breakfast while I trolled the internet, talked to Lisa on the phone for a long time, talked to Ed a few times when he had questions, looked up a bunch of things on the internet, read what Lisa had written on her blog (Pondering of the Path -- beautiful if you want to look), checked my email when every new message came in and went to the bathroom a few time.

All this to announce to everyone and no one except me that I am starting to work on the writing project today. I’ve done a bunch of background work, like put all of my blog entries into word processing files, which took most of the fall. I was in no rush until I got to the very end. It was tedious boring work that needed to be done. I am proud of myself for the prep work, but now, get on with it!!

My plan was to being writing this week -- well, begin compiling and cutting and pasting for awhile -- but yesterday, the first day Julia was back to school after winter break, I needed to clear the desk, pay bills, and then drive Julia around. I woke up at 5 this morning, 45 minutes before the alarm went off with so many ideas in my head as to what to write, how to start, what middle was good to begin with, that I could not get back to pleasant slumber for those 45 minutes. But faced with the blank screen and knowing that the anticipation of writing can, many times, be the most pleasant part of the experience, I did want to prolong that idea that I had a plan, the skill and the ideas necessary to tackle a writing project. Maybe that is why I only had to spend the morning, and not the whole day, procrastinating.

Referring to Depaak’s quote, I have no trouble finding the chaos: my desk, my mind, my life, my aims, my desires, my wishes, my goals, my ambition. This will be a great change. Indeed.

I usually give myself until my birthday later this month to come up with resolutions but I’ve been tweaking this for days and I think that I am done with it. A decent list. Ambitious, but then why else make a list.

Resolutions for 2012:

live simply;

give more, expect less;

disengage from people and situations that feed weakness;

complete fallow year projects;

take up extravagant, ambitious projects;

take care of my body;

dip deeper into the well of mindfulness;

do the work at hand without regard for economics or ego;

love foolishly and without regard for the outcome; and

invite society and adventure into my life.

There is nothing to fear.

Gingerbread dinosaurs

2012-01-08T21:27:00.002-06:00

On Friday, Julia and I baked the last batch of possible Christmas cookies -- the gingerbread dough that Cheshire made up on Christmas eve and then didn't get a chance to bake when she was home. Julia and I rolled out the dough and cut many, many dinosaurs and stars and angels and little men. We wore my mother's 1950's aprons -- still ironed and crisp. Julia thought she looked so pretty, and so she did.

2012-01-07T22:32:00.001-06:00

A quiet good day for Julia and I on Friday. We woke up late, spent the early part of the day making the last batch of gingerbread cookies -- many dinosaurs in that batch -- from dough that Cheshire mixed up and left in the frig two weeks ago. We made the most delicious and thin cookies, baking them for such a short time -- 8-9 minutes in the oven. Now, what to do with them??

We went to see Dolphin Tale -- pretty delightful movie and Julia loved it. We are slowly moving from animated films to live action and it helps when the action is about an animal. She understood all of it and enthusiastically talked about it afterwards. It is an incredibly tear jerker and I had tears running down my face 15 minutes in. But the time we left the theater, I had run out of klenex as well as the napkins I brought into the theater for out popcorn. As we were leaving, a woman asked if we had seen the movie and what we thought about it. I had a hard time talking!

Julia and I stopped for some sushi after the movie. I had sushi, she had a bowl of soup with those thick udon noodles and vegies and shrimp. It was strange that when she first got the soup, she did not know how to use the chopsticks. We don’t use them at home mostly because she has not been interested. Maybe I will put them out again when we eat appropriate food. It took Julia a little while to figure out how to eat the soup and it was really hot which made it hard for her in the very big bowl. I started putting noodles and vegies in a smaller bowl for them to cool a bit. Julia started eating and then evolved into a very effective eating machine! It was as if China washed over her. She was picking up the bowl, scooping the noodles up like she did when she first came home, and slurping. When she was finished her mouth was greasy and her grin very large. It was as if she tapped into her inner Chinese eater. Very sweet. Ok, a bit messy, but still, very sweet.

At the theater, Julia spilled about a third of her popcorn before the start of the movie. I was going to just let it go but Julia didn’t want to sit near the dropped popcorn. So, I told her to go out to the concession and ask for a way to clean up the popcorn. This is a very small theater and I wasn’t asking her to go far. I gave her a bit of a lead and then followed her out to the lobby. She was standing at the concession but couldn’t quite figure out who or how to ask. I told her to wait behind some people and when it was her turn, she walked up to the young man working at the counter. She did not quite look him in the eye but she said, “Excuse me, sir. I dropped popcorn and can I clean it up?” I was astounded at her presence. A bit awkward and forced, but clear in her purpose. The young man (I might add, bless his heart), volunteered to do the clean up, but I asked if Julia could do it. He have her a small broom and dustpan and she did. She even asked for my help in finishing the job. And funny, after that, she ate more popcorn than she usually does.

Just a brava for my girl!

And last night, another dream. This time, Italy. David and I spent months in Italy. Frascati. Just outside of Rome. He writing his first novel. Me, spending days walking in Rome with multiple guide books, hours in museums and churches, and singing sometimes. We were so far from home, the furtherest we had been up to that time. And it was a wonderful, hard, enlightening, entertaining, joyful, sad time. We came back from Italy and felt the home that was New York and got pregnant. Actually, I was pregnant when we arrived home but lost that child at 11 weeks or so.

Still, in the dream, I was in a cafe that was attached to our hotel. I was with David and Julia and we were waiting for someone. Ach! I don’t remember the sequence of the dream right now, but we sat with Adam, one of Cheshire’s old boyfriends and chatted. Some people were checking out of the hotel and we changed rooms, going up and down stairs with backpacks and suitcases. I could speak Italian and tried to explain my ilife experience to the innkeeper who was a woman about my age and who had never left her home town. I tried to tell her that I envied her life path, envied her rootedness and her complete sense of belonging. She would not believe me.

Julia wandered away from the table and to the back of the cafe. I followed her and found a group of young people getting ready to play a upright piano and sign musical comedy songs. Julia volunteered to sign first and got up on the back of a flatbed of a truck and asked for a song from Shrek -- a musical that we sing in the car in this life all the time. The piano player started playing but Julia couldn’t start singing. I helped her from the stage/truck bed and another young girl got up to sing. This one couldn’t start her song either and I suggested that she get off the truck, stand by the piano, and that I would sing with her. She had a beautiful voice and after a verse or so, I stopped and she continued without a hitch.

I wandered back to the cafe to look for David. Adam told me that he had left with Glenn (a very old friend of David’s who faded from our lives when we left NYC although I imagine that he still lives there). I was not sure whether to go back to the back room where I could hear singing or go looking for David.

Just after waking from that dream, I thought about how I sm once again looking for an idea for a job, something that I might train for and then get paid for. Then I realized what a bad train of thought that was for me to follow. I want to work. I want to work at something that I love. I want to eventually get paid, but why am I looking down the path of pay first. It might be a good way for other people to conceive of work, but it puts all sorts of stops on my thinking and imagination. It came to me that I need to just follow the tasks that I want to do. Right now, that is finding out more about mindfulness and bringing some sort of practice to families with challenging kids. That is as far as my thought had led me and that is enough for now. Enough until I find a way of doing it.

2012-01-07T09:27:00.001-06:00

Another dream. A few more and I will stop writing that a rarely remember dreams.

In this one, I was at a house for the weekend. It was an old farm house that was big and sprawling and in that way like Lisa’s house, but this wasn’t Lisa’s house. I assumed it was Lisa’s parents’ house. When we were in our 20’s and dirt poor artists, a group of us would go to Lisa’s parents’ home outside of Princeton, NewJersey, for a long weekend when the parents were away on vacation. There we would be joined at time by Lisa’s brothers. We would cook great meal -- well, we thought to them as great -- lounge and swim by the pool and play in the backyard. This was before any of us had money to go to the Hamptoms or Fire Island, and before Jon and Jim started going to Mexico for extended vacations in the winter. It was lovely and we were so lucky to use that wonderful house. Even then, Lisa and I had dreams of owning something big together, of living in some sort of coop and making our lives together.

Anyway, in the dream, the house was Lisa’s parents’ house although it did not look anything at all like their house. David was there and a very old friend, Jimmy Brennan, was there. David never knew Jimmy and during the dream I was very happy that they seemed to be talking together. David became interested in speaking with him when we started to talk about children. In the dream, I could not remember if he had a son or a daughter and I thought the child, now adult, was older than Cheshire. This was all in the dream, in this reality, I have no idea of Jimmy’s life.

Lisa asked me to go into the bathroom and try to fix something. I had been imagining a tiny, mean bathroom because someone else in the dream complained about it. But it was this huge space with multiple shower head and toilets. It was run down but something that a dorm would have. And there was a door leading off somewhere. The somewhere was an industrial kitchen and dining space. And I knew that this was the place for our retreat center.

And then I woke up.

2012-01-05T23:32:00.001-06:00

Julia and I went to my ultrasound appointment. I have a neuroma, an inflammation of the common digital nerve between adjacent toes on the bottom of the foot. Not serious, very common, and unfortunately kind of painful. I’ve known about it for a few years, and visited a foot doctor a few times just before we found out that David needed a heart transplant. (Haven’t I written this before? Sorry. I can’t find it.) I had a few steroid shots when I first visited a doctor which gave me only temporary relief and the next step was surgery which would put me out of commission for a week or two and give me limited mobility for about 6 weeks. Not terrible but I didn’t want to do that while we waited for a heart.

Well, it still hurts and it is time to fix it. I didn’t plan to bring Julia to the ultrasound but going today meant I had an appointment before February. She was great and it was good for her to see it as well. Every so often Julia does react to my circumstances in such a way that I know that she is afraid of losing me like she lost David. Today, was one of those circumstances. She was clingy and told me that she was taking me to the doctors. She checked if I was getting any shots, even though I’ve told her that I don’t mind shots.

It was both fortunate and unfortunate that we went to the UW clinic building where David did his rehab after transplant. Julia remembered it and we talked about how Daddy had exercised after his transplant and gotten stronger. Julia wanted to know which of the people exercising had new hearts and wanted them to be careful. She was nervous in the ultrasound room and had a hard time sitting and coloring. She popped up and down, and wanted to be very close to the tech who was taking pictures of my foot. Julia kept asking if it hurt me and wanted to know what the tech was seeing that was wrong with my foot. The tech was very nice to us, answering all of Julia’s questions and responding to Julia’s run on commentary about dinosaurs. She was pretty nervous.

Later, during attachment therapy, she told Marilyn that she was worried about me. She was scared. I want Julia to be comfortable with my being “sick” and recovering. It may take awhile and might be reason enough to put off surgery for a few months.

During attachment therapy, Julia worked on a picture of her birthmother pregnant. She insisted that her birth mother was happy. When Marilyn suggested that her birth mother might be sad or scared, Julia loudly protested. She wanted Marilyn to stop talking, she was clear that she did not want to continue the conversation. Marilyn started tapping with Julia -- really tapping on herself but for Julia. Julia said under her breath that she wanted to tell Marilyn to “shut her mouth” but was not going to say it. Of course, she did say it. Marilyn thanked her for not saying it too loud and then continued with tapping about not wanting to talk about her birthmother’s sadness. Julia was willing to repeat that she forgave herself for not wanting to talk about her birthmother, and that she forgave Marilyn for continuing to talk about it. After tapping, Marilyn asked Julia if she was feeling any better and Julia said that she was. Julia went back to drawing a dinosaur and Marilyn began collecting the workbook that Julia drew her birth mother in. Marilyn said one more thing about Julia’s birthmother and Julia suddenly volunteered that her birthmother was very sad because she had to leave Julia alone and that she had to go away. She volunteered that her birthmother had known that she could not keep baby Julia even when she was pregnant.

Of course, we don’t know what, if any of this, is true. Julia was abandoned as a very young infant. Her file said she was 10 days old when she was found. But it is also clear that Julia is scared and sad and feels the sting of that first abandonment. That she can go from not willing to go to that painful place to feeling some of the sadness of her earliest experiences is the opening of a flower. It is a step towards healing.

As I was coming back to clinic tonight to pick Julia up from therapy, I grabbed a warmer pair of gloves. They were my mother’s, part of the small and ordinary things that I took as I cleaned out her house. Nothing special, but a soft black fake suede on the outside and lined with microfleece. Good, warm gloves. I thought nothing of them, but when I put them on, I looked down at my hands. I had bought David a pair of gloves that were very similar to these of my mother’s and I remember his hands in those gloves. For no reason, but a flood of memories washed over me. Just about his hands. I did not stop the flow, I did not turn away, I let it happen. I remember David’s hands -- holding David’s hands, looking at his fingers, watching them type, write, draw as he talked on the phone, watching him play music -- the drums, his base, the piano. I remember how they felt -- not workman’s hands but callused from playing his double base, callused and then not from years of not playing and then callused again. I remember reaching into his coat pocket on a cold spring day and taking his hand. David was an expert at intense looks but had I not taken his hand there may not have been much more of an interchange. I remember those hands on my face and through my hair and holding me tightly. How very strange it is to remember this very specific part of him. I never thought of it at any time, but I expected to see those hands grow old and gnarl up a bit. And that will never happen. Still, I remember David’s hands.

2012-01-05T08:53:00.002-06:00

I had a dream last night. I remember it which is unusual these days and appearing in it was an old friend who, when he appears in my dreams, is a harbinger of coming change. It was a short and simple dream, a bit frustrating but very slice of dream life.

I am trying to download, print, and send some writing somewhere. The writing is either a paper or something creative. I need to send it to complete a school class or to a publisher. I cannot open the file because of its suffix. In order to access the file, I have to open my old friend's operating system and I know that he doesn't want me to do that. But I need the file. My friend is somewhere around but I have not seen him, at least during the dream. I need the file immediately so I decide to open the operating system and then open my file. As soon as I do this, my friend walks in and looks over my shoulder -- I am sitting on a low tan couch and he is leaning over the back of the couch. I turn to him to apologize and ask if I can use the operating system, but he begins to walk away. I catch his sleeve and he turns to look at me.

That's it. All there is. I am almost amazed that I know enough about computers to have a dream like this, not that I am sure that anything I describe is correct in the waking world.

2012-01-04T23:02:00.001-06:00

Christmas fits into four boxes. Big boxes to be sure. A box of fake garland for the front porch and the little trees that Julia decorated this year with tiny lights added to the little decorations. A box of tree decorations, some from my grandmother although those are shattering at an alarming rate. I lost two this year in the box. They are glass and very, very thin. I love them because I remember them from my earliest days, but most are not very good looking now, and I am sure they were cheap dime store decorations to begin with. And there are the balls, and paper garlands, and wooden animals, and knitted animals from China, and snow flakes and china hearts that I’ve collected over the years. Oh my, it is a pile of junk really. It makes for a very homey tree but it is dribs and drabs really. If I threw out the whole lot and started anew . . . ah, but I think that was what my mother did when we had all moved out of the house and she bought a fake tree, some white lights, boxes of Ukrainian decorated balls and silver garland to mark her holiday.

And those boxes are getting old. Two were very sturdy bought at a fancy storage store -- on sale at the end of some season. Two of them were never all the sturdy to begin with and after being moved between the two Indy houses and then to Madison, they are the worse for wear. But those are magical boxes. My Christmas decorations and lights and packing material has multiplied and expanded over the years and the four boxes still holds all of it.

And so, Christmas is put away. Julia was not pleased but she had a day of therapy and I am sort of just waiting to get to my next tasks which involve dragging out and up those boxes that are the grand chron file of our lives. I need to get back to what I was doing before I packed up the house last July at the start of the renovations. I could not possibly drag those boxes out while Christmas decorations were still sprinkled around the house. I was so ready to get the house back to neutral and ready to start the new year’s work, but I am left with a bit of melancholy after putting everything away and dragging the tree to the curb. Again and over and over again, the loneliness of it all. If the pots get washed, if the clothes get put away, if the bills get paid, if the tree gets dragged to the curb, I am doing it alone. Although a momentary sigh of melancholy escaped from me, it is no longer incredibly sad. Just sad. Just a fact.

Ok, I am bored with my own slow sadness. I am ready to move on. I want to get back to the gym, to my long meditations and listening to Depak in the mornings, to taking this writing project seriously, to sorting and unpacking. The kitchen, which should be completely finished by now, remains just short of finished. My contractor, who has been utterly dependable has suddenly disappeared. He was due to put in the fold down table and the appliance garage the week before Christmas. When he didn’t call to schedule a day, I didn’t mind. I was busy with Cheshire. Then the week between Christmas and New Years passed with a word from him. Then, this week dawned and I called and left a message. Still, no response. I am almost ready to worry about him. He’s been my handyman for years and never takes all the long to get back to me.

And selfishly, I’d like to wrap up the work. Have completion.

After months of daily calendar work, Julia is beginning to use days of the week and months of the year in her conversations. She asks people when they are coming back and what day she will see them on. Sometimes she doesn’t listen to the answers, but she asks. Time in some way is sinking into her everyday life. She wakes up in the morning and asks me what we will do. Years now of daily visual scheduling are made her aware that activities are planned. She still doesn’t have hours and minutes down, but we are headed in that direction. I will no longer be surprised when she learns it because she has learned so much that I thought she would never master.

And although I understand how important it is that she understand concepts of time, as well as other math related concepts, I am also aware that I may be taking something away from her as I force her to engage more with my world. I don’t mean to sound like some hopeless romantic who thinks there may be great world of imagination and creativity in a mind that is not or cannot be socialized to take part in the reality in which we all live, but what if . . . . I don’t know how a person lives with time or counting. I have no experience living without either. Numbers and a number sense are part of what define the box that I inhabit. What if they didn’t? Julia’s box has lots of hard and scary things in it. Things that we -- me, therapists and teachers -- are trying to heal, trying to change, but Julia is also an artist. Artists see the world in unique ways. Maybe this line of reasoning harkens back to the way I believe in raising children -- following their lead. I’ve written before that no part of my parenting Julia follows this belief. Maybe I have that nagging thought that will not be quieted that Julia’s way of living needs in some way to be supported and allowed to flourish. Maybe not everything needs to be changed.

Ok, I am babbling and have no idea where to go with this. I can’t even give a concrete example. I want Julia to fit into some society. Fitting in is important. Artists never fit in. Julia is an artist. This is some sort of logic problem that I must have gotten wrong on the LSAT.

Julia is tracing dinosaur pictures from a drawing book. She has been tracing, and editing a bit, and then coloring to match the pictures in the book. Sometimes her pictures are better than the book. Today, she was tracing something with plates on its back. She traced the entire dinosaur and then erased it and made it bigger by about a third. It was perfect and about a third bigger. Question is how important it is for her to know what a third is? I know. I know. It is important. But sometimes . . .

2012-01-02T13:01:00.000-06:00

Umm, I started this yesterday but again, and probably mostly because Julia is home, the day ended and my eyes were too heavy to finish it after Julia was asleep.

New year. I was the lay associate for our church service yesterday. I read the announcements and welcomed the congregation to the service. It is the most public thing that I do these days since the fallow period began. It is a good thing for me to do, be public, read, announce. Julia sits with me in the front row. She has her supply of coloring books. When we arrived at church, she realized that she did not bring crayons or markers and we raided the kid bags, that are on hand for fingers that needs to be busy during services, for substitutes. Two years ago, using crayons that were not hers after she has planned to color in church would have been impossible for her. She would have begged to go home to get her crayons. She would have become unruly or had a melt down. Her ability to be flexible has increased dramatically over these years. It is not perfect -- I can hear a bit of imperfection downstairs as she works with a therapist (yes, therapy on new years day) but she does not get stuck in some transition or in some disappointment for hours at a time.

This is progress. A person does not “get over” autism, nor it is cured, but an ability to be flexible makes it possible for Julia to move more easily through a neuro-typical world.

Like church on a Sunday morning.

In his sermon, Michael talked about how he does not and never has indulged in the ritual of new years resolutions. His reasoning made me smile. It reminded me so much of David’s who also did not make resolutions. Michael said that resolutions, as someone else had written and as he understood them, were based on two ideas: regret and hope. Regret that we had failed in some way to live up to our ideal of ourselves, our best potential; and hope that we could change and do so in the future. Neither regret or hope compels us to change by themselves but together they are seen as a strong force.

Later, I read a friend’s blog who had a different take on why not to resolve at the beginning of a year: “I have been thinking about this subject quite a bit as we passed from 11 into 12. The bottom line for me seems to be that I do much better when I am quiet about what I am about to accomplish. I have reached quite a few of what seemed to be almost insurmountable goals in the past, by quietly and steadfastly moving forward until they were attained. I do have goals for myself again this year and I am going to leave it at that...they are goals and they are mine; mine to quietly and steadfastly accomplish and there will be no public proclamations about them.”

I am a person who makes resolutions each year. I also adopt a motto for the year, and I admit that possibly both resolutions and motto can be explained by regret and hope. I would not have thought of it quite that way. I do not feel that regret really comes into play for me, but the next to hone the spirit, the need for goals and reminders has always been very strong. I do usually take my time and to the extent that regret might define some of my inclination, the resolutions do repeat themselves from year to year. I must have been much more deliberate this year because although I will be repeating some of my favorite resolutions for 2012, for many of them, I have moved far beyond where I was at the beginning of 2011.

As for announcing publicly, as much as this blog is public, David would have also agreed with my friend, Lori. He was a quiet and private goal setter and he always got things done -- wrote novels, finished raw wood window frames, sent out plays and short stories, and taught. All while he was working full time. My friend, Lori, does big things as well.

I more need than they do/did to be help accountable. Maybe to my regret/hope cycle, I should add a keen sense of embarrassment if I stray too far from my stated goals. Maybe I just like making lists and checking things off. Maybe I need constant reminding.

Last year’s resolutions were ambiguous and ambitious, almost poetry for me: to squeeze the life from every minute, to leave no rock unturned, to love full out, and to invite adventure into my days. There is no need for fear. In making resolutions like those, I was resolving to go on when what I really wanted was to curl up and never leave my bed again. I wanted to turn away from everyone and everything. I was holding on to so much fear and longing and sorrow.

Twelve months later and I am not afraid that I will give up and just stop. There have been so many times in the last year that I would have been at peace to just fade away, to expect absolutely no more from myself than the necessities of a very boring life. And with only those necessities, I would have faded away. The impulse is weakened now. The resolution born out of sorrow and great fear is incorporated. Could it be that I need to post the goals just so the dreariness of my day-to-day could not be my ruse in forgetting where I wanted to be?

So, so, so, for 2012, I resolve . . . I don’t have the list yet. I wrote days ago about writing and a date. Those for sure are on my list and I am going to pretend that I am in control of both. Don’t laugh. Do old ladies with challenging children date?

2011-12-31T14:03:00.002-06:00

Julia lost one of her stones that she carries in her pockets. It was the green stone. I'll have to go back and find the name. She wanted another stone and two days ago we went to the gem store to find it. I thought she might get the same stone. I thought the woman there might help her find another. I decided that since she lost the one that I bought that she could pay for the stone from the money in her piggy bank. Then she would have more ownership of it as well. I don't know how much of that she understands but she goes through the exercise when I ask her.

There was someone in the shop when we came in and we looked around at the stones and cards and jewelry. Julia found a green stone in the shape of a heart and wanted to buy that. I wanted to ask the woman who runs the store but when she saw it she laughed and said that Julia really did not need her at all.

The stone she picked was Aventurine. This is what I found about it. Aventurin is a stone of prosperity. It reinforces leadership qualities and decisiveness. Promotes compassion and empathy. Encourages perseverance. Aventurine relieves stammers and severe neuroses. It stabilises one’s state of mind, stimulates perception and enhances creativity. Aids in seeing alternatives and possibilities. Calms anger and irritation. Promotes feelings of well-being. Aventurine balances male-female energy. It encourages regeneration of the heart. Protects against environmental pollution.

Green Aventurine is a comforter and heart healer. It neutralises all sources of electromagnetic pollution, blocking out emanations from computers, television and other electronic equipment. Green Aventurine settles nausea and dissolves negative emotions and thoughts. It brings well-being and emotional calm. A good all-round healer. Aventurine benefits the thymus gland and nervous system. It has an anti-inflammatory effect and eases skin eruptions, allergies, migraines, and soothes the eyes.

Really, there are plenty of stones which don't mention things like healing the heart, promoting compassion and empathy, encouraging perseverance, stabilizing the mind, and easing skin eruptions. And yet, that is what she wanted.

It is the last day of this year. This very hard, very challenging year. I don't want to suffer as much next year but I want to grow as much. I want life to be as thrilling and exciting. I want to take more chances. I want to learn and do and have no fear. If this is asking for suffering then suffer I must. I would also like to ask for joy. I want a moment of pure, undiluted, full bodied joy.

2011-12-30T07:30:00.008-06:00

Sitting at the desk in the play room, I am no where near as happily typing as I am when I can just reach over and grap my laptop and type. All while still sitting in bed. Having the laptop at immediate hand is like a pencil and notebook at the bedside. Sitting at the desk is not. And when I can stay right next to Julia who is fast asleep, I am be more sure that she is not scratching in her sleep. Which she does. But I could not just lay for another hour or two upstairs. Boredom had set in after twenty minutes or so.

Best prognosis on getting the laptop back -- today at the earliest, Tuesday dependably. I am hoping for tomorrow.

Last week, last Friday, I took Julia to the pediatric dermatologist. It is one of those referrals that you wait months for. Funny, ridiculous, insane to wait months for a skin doc referral. Maybe I should say to wait for a referral for a condition that worsens and changes daily. When the referral and appointment was made I hoped that I'd have to cancel it because Julia was healed.

No such luck.

The doctor, an Asian woman, very nice skin, I had to notice, was very bright and condescending. I was asked to give the details of Julia's condition four times before seeing her -- first, written on a form, then to two nurses separately (one might have been a PA), then to the resident, and then to the doctor. I balked at the third retelling, asking to not have to repeat myself until I saw the doctor. The resident snapped back, "I am an doctor." And I stepped back but not as graciously as I might. No one had looked at Julia, they just wanted my words over and over again. I have only so many words. I don't change my story. And there is a point where I can hear that my explanations sound almost foolish. Added into my exasperation are the many phone calls to Julia's primary doctor and talks with receptionists and nurses where the same story has been told and retold. Bites, scratching, rash, nothing working with the itching, even without scratching, no healing.

The resident, very pregnant and clumsy getting around the small, not tiny but cluttered, examining room, did not take notes but circled the notes taken by the nurses. Really, it was the same story. She swept out of the room to the extent that she could sweep, and a few minutes later I could hear her conferring with the doctor right outside of the door to the examining room. She went through a check list of what it wasn't -- no scabies, probably no parasites, not an allergic reaction -- and commenting on my unpleasantness. Oy. Yes, I should have been more patient. I wanted answers from these people and my attitude was not helping that. I can justify and make excuses for myself, expect more from those medical professionals, but in the end I wanted information and help and my attitude however justified was not helping get what I came there for.

One more justification -- again, not a good one but one that is such an irritation to me -- is waiting for doctors. I was scheduled for 10 a.m. and asked to arrive at 9:45. We were on time, even a few minutes early since I knew I would have forms to fill out. Still, we were not taken to an examining room until 10:25, and then had to give the story to two nurses and the resident before seeing the doctor. I saw the doctor for about 20 minutes but that time didn't begin until after 11. Petty, yes. Irritating, yes.

Now on to the meat of the matter.

The most likely diagnosis was papular urticaria + neurotic excoriations with an element of dermatographism. And to translate that into something that resembles English:

Papular urticaria is a common and often annoying disorder manifested by chronic or recurrent papules caused by a hypersensitivity reaction to the bites of mosquitoes, fleas, bedbugs, and other insects. Individual papules may surround a wheal and display a central punctum.
Although the overall incidence rate is unknown, papular urticaria tends to be evident during spring and summer months; in some climates, such as that in San Francisco, California, this condition may affect children throughout the year. In addition, despite no known racial or sex predisposition, certain ethnic groups (specifically Asians) may be more predisposed to more intense reactions, and a small Nigerian study reported a slight female predominance for skin diseases such as papular urticaria and atopic dermatitis. This eruption is primarily self-limited, and children eventually outgrow this disease, probably through desensitization after multiple arthropod exposures. However, adults can be affected, albeit at a much lower rate.

Patients consciously create neurotic excoriations by repetitive scratching. Neurotic excoriations should be distinguished from dermatitis artefacta, in which patients create lesions for secondary gain. Neurotic excoriations can be initiated by some minor skin pathology, such as an insect bite, folliculitis, or acne, but it can also be independent of any pathology. Because no significant underlying pathology is present in the skin, neurotic excoriations are really a psychologic process with dermatologic manifestations. Many doctors lack an extensive understanding of neurotic excoriations and its treatment. The complex interplay of the mind and urge to create a neurotic excoriation even in 2010 continues to receive explication. Dermatologists are aware of this complex dynamic and continue to grapple with it.

Because patients create neurotic excoriations, the lesions have the quality of "an outside job," that is, clean, linear erosions, crusts, and scars that can be hypopigmented or hyperpigmented. The erosions and scars of neurotic excoriations often have irregular borders and are usually similar in size and shape. They occur on areas that the patient can scratch, particularly the extensor surfaces of the extremities, the face, and the upper part of the back. The distribution is bilateral and symmetric.

The manifestations of neurotic excoriations vary widely from unconscious picking at the skin to uncontrollable picking at lesions to remove imaginary foreign bodies. Picking is usually episodic and irregular, but it can be constant. The picking can have the quality of a ritual and may take place in a state of dissociation.

Dermographism or "skin writing") is a skin disorder seen in 4–5% of the population and is one of the most common types of urticaria, in which the skin becomes raised and inflamed when stroked, scratched, rubbed, and sometimes even slapped.

So, Julia is particularly sensitive to bed bug bites, has very sensitive skin, and has scratched herself into a skin condition. The good doctor did not bother explaining this at all. If she had, I guess I could have said, "duh"!

Do I sound disgruntled? I am annoyed. I was annoyed when I was at the appointment and as I dissect the opinion, I am more so. The patient instructions are no better.

The doctor poo-pooed the herbal Wound and Itch Ointment that we've been using. That fact, that I told her, that it is the only over the counter remedy for itching that has worked with Julia, made no different. She suggested Eucerin Calming Cream, Aveeno, Calming Cream, Sarna lotion and ice. The Sarna, which works very well for Julia on bug bites is of no use. Ice it great but it only works if an adult is sitting right next to her. She does not reach for it on her own no matter how many reminders are around her. The sentence that says that the picking can take place in dissociation is particularly relevant.

The doctor prescribed a stronger steroid cream which I am using very judiciously twice a day. It does shrink the sores and it is the most useful part of patient instructions.

The doctor upped Julia's dosage of ceritirizine from 10 mg in the morning to 10 in the morning and 20 at night. Cetirizine is an antihistamine that reduces the natural chemical histamine in the body. Histamine can produce symptoms of sneezing, itching, watery eyes, and runny nose. It is used to treat cold or allergy symptoms such as sneezing, itching, watery eyes, or runny nose. Cetirizine is also used to treat itching and swelling caused by hives. The 10 mgs during the day seem to help Julia, however even 10 mgs at night make it impossible for her to sleep and after a dose at night (10 mg) and another dose in the morning, she was hyperactive all day.

The doctor advised that I spray Off or another insect repellent on Julia twice a day. She explained (although she did not write this down in patient instructions) that body mites may be aiding in the reinfecting of the skin and contributing to the secondary papules or bumps that appear as a sore heals. I am spraying her as instructed just in case this mite theory is true but it sounds to me more like something that I am suppose to believe in without proof. Thus, carrying stones and crystals seem as likely, if not more, to aid in Julia's healing.

The final instruction is to "wet wrap" Julia at night to decrease the inflammation, hydrate the skin and provide a physical barrier to discourage scratching. This is in lieu of the band aids and bandages that I put on Julia, which were also poo-pooed by the doctor.

This procedure might work in a hospital with a heavily sedated patient, but with a 10 year old with cognitive challenges and hyperactive on antihistamines, it is a bust.

The directions: Soak in a warm, not hot, bath for five to ten minutes. Shake off excess water and apply the prescribed medication to the damp skin withing 2 to 5 minutes after leaving the bath. Immediately after the medication is applied, put on moistened , 100% cotton tightly fitted long underwear. The long underwear should be immersed in very warm water and wrung out so that it is very damp but not dripping wet. This layer should hold moisture for 6-8 hours. If it begins to dry out, wet it again. Next, apply a dray 100% cotton sweat suit over the moistened layer. This layer is to prevent the wet layer from drying out. If hands or feet are involved, wet, white cotton socks and wet dermpak gauze gloves. Note: You may become chilled while wearing the wet wraps so use extra blankets for warmth. Although the doctor said that this would be comfortable, no one else I've talked to thinks so. I don't think so.

Julia does not want to wear wet clothes at night. My attempt to put wet socks on her was a failure. I would like to try it for one foot and one wrist, both of which she scratches at night and both of which resist healing. I have not figured that out.

So much for experts. I debate whether to call the doctor back to ask for help with the antihistamine and suggestions regarding the wet wraps. I don't know whether she will be of help.

And one more thing. Before the end of the appointment, I mentioned Julia's struggles with her early life and trauma. The doctor clearly stated that she was looking at only the physical conditions. "Let's treat her skin first and worry about the rest later." Maybe this statement, more than anything else, forces me to believe that I do not have an ally here. In the information I just copied, it says: "Many doctors lack an extensive understanding of neurotic excoriations and its treatment." So, even after the doctor provided the diagnosis, she appears to lack the exact understanding stated. She wanted pure physical explanations and solutions, and that is all she intends to help us with.

It strikes me that in David's case, we looked for a purely physical solution. That is, he got the replacement part, a new heart, and then pushed himself to resume the life that he had known before his heart started failing. I cannot blame him or me or us for this. It was our nature. We have not been afflicted with disability that changes a life or that molds a life into a particular form. I have always fought my stuttering -- not that stuttering can compare to a failing heart or a damaged brain -- but it was the only disability that I/we knew intimately. Bully our way through. Fight to be like normal. Don't feel sorry for yourself, just do what needs to be done. All of that echos in my head when I think of my life. David's life. And all of that failed with David after the transplant.

This is not to blame. Not at all. This is our culture, our intellectual heritage. These days, I bully Julia. Pouring math facts, math games, number puzzles, and more into her head. Being fiercely frustrated and angry when she cannot remember, cannot understand, cannot do the operations that I required her to do. I break them down, I repeat and repeat, and it does not stick. I am close to abusive in pushing her to learn.

David bullied himself. He did the physical rehabilitation after transplant with rock solid resolve. He went to that reading of his play two weeks after transplant. He was back at work, part time on paper, but really more, less than three months after the transplant. He wanted to resume life much too quickly. We did not know that resuming was not the option and we believed that anything less than resuming was for weaklings, under-achievers, ne're do wells. We had no idea. We had my stuttering and Julia's limitations as a hint, but we ignored both of those. I did not see the lesson at all. I was totally oblivious to it. Sitting here now, typing this, I am stunned by our stupidity. I don't mean that there were medical professionals out there who were giving us some information about life changing and we were ignoring it. They were are ignorant as we were. They applauded David's "getting back on the horse."

And here I sit, typing, with this lesson. Have I learned it? I can say that I see it. It was so far from my conscious mind at the time of the transplant that I can't even imagine that if I had only talked to David about it . . . we knew nothing. We were so set on our path to recovery and normalcy. I want to write, if only . . ., I wish someone had said . . ., If only we could have read . . ., but I am not sure it would have done any good at all if the idea, the thought, the realization was not already somewhere inside of us. And it was not. As Julia does not have a neuro-typical brain, David did not have a biological-typical body. As Julia cannot learn like other kids, David could not live like other people. We made a choice between typical life and death. I see now that it was an absurd choice but in so many ways, it was the only one that we chose, that was presented to us, that we steadfastly believed in. It is because I believed, and I can really only speak for me even though I use "we" over and over again. I guess it about David. I can only know it about myself. It is because I believed that life has only one path.

Oh, this sounds much too simple. Much too direct. Much too distilled. How could I be so foolish to believe that life has one path? Yet, there it is.

Julia is not on that path. And I am STILL not comfortable with that. I STILL do not embrace her difference as her. She is not her differences but she is herself living differently from typical children. She may intersect with typical children in some ways but she must be developed, be helped to develop in that unique way that is herself.

When asked about Cheshire's upbringing, I say that the best that we could do was to stand out of her way, provide her with what she needed and allow her to grow. It was not that simple but I do believe that it is, in essence, what we did. For Julia, I do not follow any part of that advice. I do, I interceed, I teach, I push, I punish, I do anything and everything in an attempt to develop her the way that I perceive is a close to normal as possible. I need to follow my own advice, my own parenting method. Not the same way, of course, but in the unique way that would benefit Julia.

And I think that when I resolved right after David's death to live deliberately, it was the closest I had come up to that point of understanding all of this. I did not even know what I meant when I said it. I still don't know exactly.

My head is crowded with ideas that I cannot write. My head aches in sadness of realizing this now. My eyes cloud over. It is astonishing to make discoveries, to grow just a little bit, but it hurts so much as well.

2011-12-27T18:37:00.002-06:00

New blogging challenge. My macbook is in the shop to fix the display and I will have only my big old' stand alone. I am so spoiled having a laptop whenever I want. The repair is not covered. Ywarantee but I cannot give up my macbook. This little folly has taught me that I probably do need Apple care for the phone. Fool me once . . .

And maybe I'll learn something about the phone as well.

2011-12-26T16:41:00.001-06:00

Dishes are washed; platters and cookie sheets are put away. The load of table clothes and napkins is folded and back into a drawer in the kitchen. The insulated shades in the two bedrooms not normally used are down. Julia has had three therapists in the house today and is quietly playing and chatting about Peter Pan, her playmobile horse barn, and the chocolate gelt that she is munching on. I have an almost irresistible urge to put Christmas away -- take down the tree, put away lights and candles, and get the house back to the new normal of a renovation that is 95% finished.

But I won’t take Christmas down quite yet.

Julia loves the tree and the window lights. And after all, the tree has just be up for a 5 days and decorated for only three. I can leave it all be for at least another week. New Years might be a good day for it, but I have at least two reasons for putting it all away.

The first is no surprise. First Christmas with all my stuff -- home, with Cheshire home, with those boxes of Christmas decorations and bits of memories oozing out from every corner. So many Christmases past. David was not a good gift giver. I had been spoiled before I met him by a young man who gave me wondrous presents that were necessities that I had no idea that I needed. They were beautiful and many of them handmade, and ever so thoughtful. David could buy from lists or suggestions, but when he ventured beyond that, his choices usually fell short. Of course, he would probably say the same about me. Both of us returned many, many presents and congratulated each other when either of us was really happy with a single gifts. The gifts that worked the best were those with healthy doses of nostalgia built in: Baci from our days in Italy, favorite old movies, travel books, and for me from David, little pieces of jewelry, stuff of every day wear. This year on Christmas, as we were emptying our stockings, the stockings that I made the year the Cheshire was born and quite conveniently had made 4 -- just in case, I found a little chocolate reindeer in the very bottom. We all were trying to guess what it really was because it was not clear from looking at it until you found the drawn antlers. I was surprised the Cheshire didn’t know what it was assuming that she bought it, commenting to myself that it was strange that she put one in my stocking and not in Julia’s and did not get a piece for Linde. But of course, Cheshire didn’t put it in. We were not home for last year and so, the diminutive reindeer must be two years old. Sitting in my put away stocking since Christmas 2009. Like the Valentine Day’s card that popped out from no where last winter, this is a David gift, neatly concealed, awaiting discovery. A wish from that other life we led, a sigh that travelled through time and circumstance to be my surprise, a sweet message that I/he/we can still think of each other. There will not be many more of these surprises, any more of these surprises. But I said thank you. Even if it is the last.

Our busyness over the week before Christmas kept my mind where it needed to be. Here. Present. Living each day. Talking endlessly to Cheshire and Linde. Shopping. Baking. Cooking. Doctor visits. Therapies. Making my daily lists and checking off the tasks accomplished. Every so often I would be quiet or alone and I could feel myself sinking, feel myself being swept into the sadness. The well was not as deep this year, not as desperate. I did not claw with bare knuckles, I could hoist myself out with strong arms. I did not get lost. I did not let the noise of the present dim to engage the sad.

I write that the well is not as deep, but I am not sure if that is true or if I just don’t need to sink into despair. Is it will? Is it healing? The sadness and missing is still there to be sure. Dropping Cheshire off at the airport yesterday at 4, I felt as alone as I ever could. There seemed no reason to do anything but disappear into nothingness. Having a Julia Dinosaur with a playmobile horse farm to put together is the stuff of tomorrows. Of joys. Of the new life.

I was not incredibly sad this past week. I was conscious that I wanted to do tasks that had the potential of becoming new traditions. I have a great need to begin anew and that was what I was doing. It was exhausting in part but I, and my girls, did it. And we will do it again next year and the year after.

But now that it is over, it would be nice to just be past it all and on with our regular life because there is that exhausting part. The cheeriness of the season does not wear well.

And then there is the feeling that Cheshire explained to me. Anticipation for this next bit of living. For Cheshire, it will be off to NYU and the beginning of her social work masters. Eighteen months of hard work. She is excited. She can’t stand waiting. I share the feeling about getting back to the work of lying fallow. The boxes and files need to be dragged back upstairs from the basement. The sorting needs to begin again. The unpacking and pile making needs to happen. The renovation of the house has truly given me a new lease on my surroundings. The colors, the shapes, the storage are so serene. I have created a good work place and a place with quiet beauty and calm. There are blank places to fill in. The dining room is especially empty after months of housing the make shift kitchen but that will come. It will be full again soon enough with the papers and boxes and files. I have someplace to comfortably sort now. I am ready to take up the work that I put aside when the kitchen work started and I am ready to go further.

I finished putting the blog entries into word processing files. I believe it is time to move on to a project with all these words as well. I hesitate to start. I have no idea where to begin. The deep water beckons.

On Christmas, during a brunch of lox and bagels and grapefruit salad and apple oatmeal, I announced my intention to begin a memoir. I announced it to those present, most of whom knew my intention, but I announced it to make it so. To mark the beginning of the work of it. Even though I have no idea of where to begin. It is my greatest resolution for the new year.

And my other resolution, one with less import, but still needing energy and resolve. I will go on a date in 2012. Don’t laugh! Really. I want a partner some day. Not soon. Someday. But I need some social practice and a date would be a very good idea.

So much for Christmas.

Christmas Day

2011-12-25T22:58:00.002-06:00

Christmas Eve Images

2011-12-25T22:56:00.002-06:00

The week's baking

2011-12-25T22:50:00.004-06:00

2011-12-24T07:56:00.001-06:00

Something is wrong with my notebook. Ach! It has been strangely slow for a few days. Weeks? Possibly. For the past two days, it has been fading to white at times. This morning it took a very long time to get into working mode. Not good. And not convenient. No chance of going to the apple store today.

Christmas Eve list with comments (possibly, if the computer holds out):

decorate tree -- Yes, we’ve waited a long time. Longer than ever before. We bought the tree two nights ago. Finding a parking lot with a long Latino man in a temporary shelter on Thursday night after Julia’s last therapy session for four days. We -- she and I -- are alone, alone with Cheshire and Linde and tomorrow Mary and Robert. I appreciate our team of teachers and therapists. They are how Julia and I have grown and learned to be a family, but I am feeling like a bird let out of a cage. I covet the freedom, especially at home, of some exclusive family time. And the tree, we found easily. The right size and shape. A decent price although I could have bargained with the seller. I could have paid less, but, in a less than truly capitalistic move, I just paid what he asked. I mean, he was standing there in the cold. There was no one else shopping for the few dozen trees he had left, and I bet, that most folks shopping for a tree so late, bargain down the price. I would be in tears if people did that to me on such a cold night. I did not have the heart for it. Let the few extra dollars buy his Christmas gifts.

wrap presents -- I’ve always wrapped all the presents. David used to complain, jokingly, at least I think so, that I could not wrap my own. I do such a nice job. But this year, I feel the aloneness of it. I don’t want to cloister myself in my room with paper and ribbon and tape.

family service at church -- The first of four Christmas services. I would love to go the more musical service, but that will have to be for another year. The last time, I was to the family services was in 2009. That year, David’s last, Julia was more willing to sit through the service. She did have crayons and coloring books. It was notable only for the fact that when I noticed there were not enough volunteers giving out cookies, I jumped in to help without a thought that I should ask someone first. A taking on of community that makes me smile now.

make lentil stew -- for supper tonight. Our chosen dish. Comfort food, I think. With crusty french bread

make oatmeal apples for tomorrow -- Our Christmas brunch menu: Lox and bagels, grapefruit salad, oatmeal apples, and a platter of our baked goods.

wrap poppy seed rolls for travel -- The baking started with Cheshire wanting to bring some of our traditional baking to Chris’ family when she returns on Christmas day. It is interesting to me that usually I bake for days and days and then feel a bit of remorse letting go everything. David always wanted to keep some of my outtput for ourselves. Freezing cookies and poppyseed cake. This year, I feel so differently. I have very little attachment to any of the work I did with the girls. If by tomorrow evening, there was a few biscotti and a single piece of poppyseed cake left in the house, it would be fine. It was/ is so much the process, the work that we did together that was the real joy. And I almost don’t believe that I said that. Okay, it is not about all of my life, just about a few days of baking, but maybe I am learning from this time.

puzzle -- Cheshire wanted to buy a puzzle yesterday for us to work on during the day. And so, we will. What sweet time.

Other things to write about:

A snuggly Julia. We are back to sleeping on less than half the bed. Julia used to sleep like this when there were three of us in this big king sized bed. Sometimes with me, sometimes David, The person she was crowding slept on less than a third of the bed. Way less. It was always uncomfortable but the last few days it has been like the return of some kind of normal. Funny how normal can be uncomfortable and yet very comforting.

She is brighter. She is more aware. Yes, her attention is harder to catch when she is involved in something, but teasing that thread from the one that marks her presentness with me and I see a difference.

Please, please, I have missed this part of this child. Only on the return of her brightness do I realize how different she has been. The rashes on her body do seem like only the physical manifestation of what is inside.

Yesterday, one of Julia’s aids was telling me how Julia worked so hard to pronounce a word she was having difficulty with -- prairie. When Julia is interested, she is very persistent, especially about words. She was like that from her earliest days with me, and that interest and perseverance continues. Shannon said, “She is such a bright little girl.” People used to say that -- well, not people, Julia’s Kindergarten teacher, Christy, used to say that. She saw something before most others did. Hearing Shannon say it, I realized how few people have said it. Is this the brightness that I see returning? I don’t mean to say that I am in mourning that Julia is not smart or school-able, but rather that . . . . well, maybe . . . there is so much healing, so much growing, so much understanding that this child has had to take on. I am moved to write, so much darkness. When I realized the changes that I’ve been through since she has been home -- so many deaths -- and she has lived through them too. She has lived through me living through my changes. Add that to her own experiences and it would not be surprising to find her bright light buried beneath a dark basket. How could she believe that it could be safe for a little bright soul to sing out in her world?

And Julia is singing in school. She skips more often.

2011-12-21T04:29:00.002-06:00

I could just curse the . . . what? Who? I have no idea. But I hate falling asleep when I put Julia to bed, missing a late night talking with Cheshire and Linde, and then waking up after 2 and not being able to get back to sleep quickly. Such a schedule just means that it will be repeated tomorrow! Drat! I would rather be burning the candle at both ends but that has never worked well for me. Certainly, late middle age is not the time to embrace candle burning.

Having Cheshire home is always such a joy, and it is now. Rushing about, taking on much too much this week, pausing to be together doing something silly, and squeezing in another shopping trip or cooking time. Cheshire went to Milwaukee to pick up Linde who will also be with us until Christmas. The house, the home expands. We have not all been together under this roof since David died. I miss Lisa’s presence. I so look forward to some time with Mary and Robert. Amy will come by tomorrow to take pictures -- holiday cards will be for Chinese New Years. Breath in, breath out.

I am rambling. I will do more.

Last night, the first night of Hanukkah, we sat down to latkes, and with no intention to offend, pork chops and apples. We lit the candles, explained the candles we lit to Julia. We said the blessing and ate and talked and rushed Julia off to bed late.

I am feeling a bit too rushed once again taking a bigger bite than is comfortable to chew. Needing to let go of expectations of my perceived perfection and just experience the perfection that is in front of me. Whoa, yes, the old hippie talking -- but . . . I thought to do a “little” baking this week with Cheshire. She expressed a desire to bake some of what I’ve always done for Christmas, and then she wanted to bring some back to New York for Chris’ family, and then I wanted to bake a “little” for teacher and therapist gifts. This is the baking I usually do two weeks before Christmas and could not do this year because of the kitchen work. And then, suddenly, quite out of my control, the “little” baking turned into a big deal that has deadlines. And tonight, at 3:50 in the morning, I am worried about it. This is when the old hippie perspective needs to kick in. And it has not yet.

I don’t want to feel rushed. Of course, I don’t want to be bored with nothing to do either. I have a list inside my head of what needs to be accomplished this week, before the weekend, and without forgetting the round of appointments, therapists, and docs. Why is moderation such a challenge? Always!

Another project -- Cheshire and I have been searching for a kitten. We’ve visited two of the Human Society sites and yesterday, we went to a woman’s house to see her kitten. None so far seem right. Cheshire wanted us to find one this week for her to play with while she is home. I can’t blame her and I wanted to make it happen. There is one more kitten to see but that owner has been slow getting back to make final arrangements to see the kitten and they are 45 minute away from us. I don’t know if it is going to happen. DidiChi was so easy to find. Strange, how easy that way, and how difficult it feels like it is now. Still, I have to find the patience to find the right animal for our household. No pleasing, no rushing. Again, that middle path.

Julia is happy to have Cheshire home. She babbles on, interrupting everyone at the dinner table, saying that she is happy to be talking to her mother and her sister and. . . and she pauses, trying to define her relationship with Linde. I said, friend, when she was looking for a word, but really needed to say family. Mother, sister, cousin, aunt -- these are all so easy to say. Such easy definitions of relationships. Such easy expressions of emotions. Friend doesn’t sound as close, as intimate. But it is. I wonder about teaching her, giving her the language to describe the important people in our lives. Do we spend Thanksgiving with friends or family? Will we gather for Christmas with family? Where is the line? The lovely blur of crossing over to be someone who will always be important.

And we still have a Christmas tree to buy and decorate and wrapping and a Christmas brunch to plan. This is why I am awake. And I can laugh at myself.

Between and amidst all the running and taking big bites out of life, we talk. Cheshire is so excited about starting social work school in January. It is good to hear her excitement. It will be challenging doing a full time expedited program and scrambling for a bit of work to keep the expenses from getting overwhelming. As I worked in restaurants to support my NYC days, as David word processed, Cheshire will be babysitting. Something that she has always done so well. Something that done well is in demand. Who knew how well that safe sitter class in middle school would pay off?

We’ve talked a little bit about our sadness. David comes up often when we talk, not always sad, but both of us have a regret that David has missed something good that has come since his death. I feel, as I’ve written before, that I am becoming a somewhat better person -- more responsible, more aggressively taking on forward movement in my life. Cheshire feels that she is happier now, has found some direction, is taking her life seriously. I know that someone might say that David is present and knows what we are doing, looking down from his heavenly perch or living in our hearts. Blah, blah, blah. Sure maybe true, maybe not. But he is not here to enjoy, to experience our “improvements,” our better than we were times. Maybe everyone who has lost a dear one feels this way, says these things. Maybe it is only novel when it is personal.

In my ramblings with Cheshire, I touch upon all of my own issues and find that I have no conclusions. I did not plan to have conclusions midways through this fallow year -- of course, early conclusions would be welcomed and one of my goals is to not demand conclusions or jump to them during the process. But still, this road in front of me is still pretty much mired in fog and mist. I don’t know what the work that I will do is. I know that in the next month I will begin in earnest to take up a writing project. I know that writing, even if I could make some paying work from it, is not enough, not sufficient to please my yearning for soul’s work. I want to travel again, taking a long time, a month at least to be somewhere but don’t know whether this summer is the time for that. And then, where? Italy or England for fun and adventure and visiting. I would love that. I know that I cannot take Julia back to China yet, but the idea of Bolivia to do some orphanage work for a month really stirs my heart. But what of a week at Chatauqua with Lisa, what of our China reunion? I have no idea. And the final question, or at least it seems to be what is on my mind over and over -- whether to expand my family in some way. Ask China again for another daughter? Look into foster care, foster to adopt domestically? Cheshire asks, can Julia share you? And I don’t know. Sometimes, I glimpse a future with two children at home. Sometimes, I don’t see that. As we talk, I check the pulse of my feelings -- what is feeling correct? What is feeling like a right path? Still so much pondering and I lose patience with myself only to catch myself up once again remembering that this is what this year is supposed to be. Trusting in some process is also very hard.

2011-12-20T21:01:00.001-06:00

Eighteen months ago I lost my physical connection to Hanukkah. Last December, I struggled with whether I should light the candles, say the prayers, and teach Julia about the festival of lights. Today, I am frying latkes, getting out my favorite table clothe, and hiding gelt under the dinner plates, very ready to light the candles, recite the baruch, and celebrate with my girls. I do love Hanukkah! Happy Hanukkah!

2011-12-18T08:10:00.000-06:00

What a day. Yesterday.

We had it to ourselves. The morning therapist calling in sick. I had planned to use therapy time to get a lot of house sorting, house cleaning accomplished. Then, no therapist and a small flood in the basement and there was little sorting or cleaning accomplished. And no matter.

We had snow to shovel -- a small bit, but Julia put on snow pants and her heaviest mittens to come out and help. She worked the entire time that I was outside and then rather cheerfully walked the dog with me. Julia still wants plenty of time to herself to draw and color but she is less unwilling to be with me for chores and less unwilling to be outside. This is an engagement that I have not experienced with her before.

Perhaps these months, since the beginning of October when I first started taking away any and all independence from her to try to control the scratching/picking, have paid a small dividend. I give her very little alone time at home -- not even in the bathroom, not even to fall asleep. I probably had given her way too much alone time since David died, needing my own alone time, and not being as emotionally available to her lest she take the full brunt of my grieving. Since October, I have done the complete turn about. Could it be that she needed that full mother care -- the bathing, the close inspection of her body and caring for every inch of it, the taking over of her physical life in the way that a mother is in charge of an infant. Because Julia came to me at 5, I gave her a measure of respect, a distance. Certainly, not a great distance, but I did not know every inch of her body as I would have had she been an infant. Now, I do. She is taking back some of her autonomy and wants to take back more, but I think she may also be used to my mothering, my responsibility for her every move. She tolerates my invasion of her world better than ever before.

And so, we shoveled, went back inside for sorting and cleaning and doing a bit of math.

We had errands for the early afternoon, that left me singing! Those ended at Panera for a late lunch before our winter solstice service at church. I took on the full joy of being a Unitarian. Winter Solstice! Lighting candles to resolve to heal our broken world and to invite the light back into our days. A telling of the story of La Befana, which David and I first heard when we spent our months in Italy, and Julia’s attention for parts of the service. I make her stand and read the candle lighting reading which is done by the entire congregation in unison, and to sing some of the hymns. We sang Deck the Halls, the first Christmas carroll of the season. Julia is able to read the words and although her singing is plainly awful, it is glorious. This time has taught me how important it is to revisit every instant that she withdraws and to decide over and over when it is the time to insist that she is present.

We went home to slabs of cake and cocoa and a fire and candles and Hook, the movie. She colored at times, we cuddled at times. And she went to bed, late but happy, I think. Lizzy, Lukie, Sally, and Mario keeping watch over us.

And in a few hours we pick Cheshire up at the airport. And Christmas begins! Bring on the light!

2011-12-17T09:12:00.001-06:00

Maybe you can take the southern China out of the girl. We raised the shades this morning to see snow on the ground. Julia whooped and cheered. She grabbed my neck and shouted, "It's back. It's back. Winter is here. Christmas is coming!!"

2011-12-16T06:51:00.002-06:00

There is a short story burning inside of me. I've had a vague outline rumbling around in my imagination for a few months. Yesterday, I felt some beginning coming. I burn with it right now but I must make the time to write a first draft to see if there is any worth in doing more. I know that if I let this burning time pass, that it will get lost, the passion will be gone. Like a crush on that cute boy in tenth grade, except that I went to an all girls school.

Julia is watching me type. She wants to know what I am writing about. When I tell her that it is about a story that I want to write. She asks what the story is about. When I tell her people, she asks if someone dies in the story. “You know, people die,” she comments as if she is giving me literary advice. I don’t pursue the topic. She needs to finish her waffles so that her belly is full before the school bus appears.

I told Julia that I might be getting a new phone like Ellen’s. Ellen has an iphone. “Then get Angry Birds.” “What about that cool conversation app that you worked on with Linda?” “Sure. But I like Angry Birds better.” How many times has she played, has she even seen Angry Birds?

The intensity of the late fall is beginning to wane. We are not free of scabs and itching, but Julia has stayed in school for entire days this week, and this morning there is no bandage on Julia's right lower leg. There are still a few bandaids on scabs that are now just red bumps but the skin which was hurt by the topical steroid cream is healing and it is time for some air. Julia is unsure that she can be trusted not to scratch on that part of her leg and I put a few extra bandaids where she is concerned might itch during the day. The awareness that something might itch and needs to be protected is new. Responsibility for taking care of her body is shifting to her. Which is what I’ve been working on. Which is what needs to happen.

Shifting on a number of fronts. I can see it coming. I think. I want it so bad I can . . . well, you know. It tastes very sweet. But no counting chicks or even t-rexes until they are out of their shells.

Lizzy, the stuffed T-rex from Disney World, and her sisters, Lukie and Sally, seem to have acquired two brothers. They are Evan and Aevan. They don’t live with us. And Julia has begun to speak about the birth parents of these dinosaurs. Lizzy misses her birth mother. The boys fight. Working on a new work book in attachment/trauma therapy, Julia draws pictures of herself feeling sad, angry, and scared. The sad and scared pictures have to do with her birth mother. The words and conversations seem to have suddenly appeared. And we so need to talk about this.

And then my feelings. Two passions seized me yesterday. Two signs that the intensity of the past months is waning and I am getting back to my wants in this life. I want to add a being to my household. I put it this way because I find myself once again considering a kitten and once again looking at waiting children in China. Then I wonder China? Maybe somewhere else? Maybe foster care.

Yes, the hill from musing about a kitten to doing foster care is rather a steep climb. But I am musing, not planning. I did ask to see a child’s file. A child from China who is with an agency. Her family had just found her, so no file for me. The agency noted that with a 10 year old, I would be restricted (by them, not China) to a child younger than 10 to preserve family order. I would not fight them on this; however, I also would not use them. If I adopted again, I want to be open to kids up to 12 or so. There will be no family order here no matter what the age of the child. That is, unless I adopted someone about 4 which is not in my thoughts at all. Any child over 6 will probably assume the older sister/brother role to Julia after they are home for a short while, and so what does it matter if that role is played by someone who is 8 or someone who is 12. In fact, it might be less confusing for the new child, if they are older than Julia is and would naturally fit in an the older sister/brother.

Of course, I contemplate single parenthood. I wish that my children had their father. But that is not our reality now. I think that I am keeping David spirit alive in Julia, but his impact in her life will fade, is fading. If a new child was brought into the mix, David would have never been his/her father. It is what is.

My other returning lust is to wander. Travel again. I don’t know if we will have the means this year. I don’t know whether it is the right time but I want my feet on foreign soil, my soul in foreign air. My first thought is China but that is still not possible for Julia. If I adopted again, I would bring her without question, because even if it was hard for her, it would be worth welcoming a sister that way. But for just travel, I can wait until she is more ready. Then, I think of Italy. Where David always wanted to return. Where I left a chunk of soul. A month in Italy. That would be pleasure travel to be sure.

But then, I think of Bolivia. Bolivia where I could possibly do some work. Work at an orphanage for a month. Do something that might point me in some direction. A piece of my heart lies there as well. And I could see how Julia would do in the kind of work that I would like to make a part of our lives.

No answers today. Just ideas. Vague and unformed. Wild and maybe impossible. Throwing it all to the universe to see what comes back to me. A sure sign that I am finding the path again.

2011-12-16T04:48:00.000-06:00

Posted by the Dalai Lama on facebook today: The first beneficiary of compassion is always oneself. When compassion, or warmheartedness, arises in us and our focus shifts away from our own narrow self-interest, it is as if we open an inner door. It reduces fear, boosts confidence and brings us inner strength. By reducing distrust, it opens us to others and brings us a sense of connection to others, and sense of purpose and meaning in life.

2011-12-15T04:19:00.000-06:00

Last night I went out to dinner with the religious education committee that I joined this fall. This is the first time that I have socialized with the members of a committee that I work with. I had the vague idea to do such a think when I was PTO president but my circumstances with David were such that it was impossible. Last night, I went to dinner at a restaurant where I celebrated my birthday with David and Mary and Robert a few years ago -- was a a life time ago? Was it two birthdays ago? -- and had a lovely time. It was dinner with six women, one of whom has a four month old baby at home. We had a glass of wine -- not the new mom -- and talked about nursing, birthing, schools, kids who don’t eat, sleeping and the lack of doing so. Yes, parent talk. Probably what women have always talked about. It was unselfconscious. It reminded me strongly of other times. Times discovering how lovely talking to women could be. It is not that I don’t do that now, but I don’t do it enough over a glass of wine and dinner. I do it on the fly if and when I do it at all.

It was not easy getting out to go to dinner. Julia had OT and speech therapy appointments after school -- the amazing stuff we did there will be discussed next! -- and there was Madison traffic coming home -- something I rarely see as i almost never travel during out brief beginning and end of work day travel surge -- and then there was a quick bath, bandaging and bandaiding and then dinner to prepare before the sitter came. Of course, the sitter had to be one of Julia’s therapists who has no trouble with the long list of Julia’s operating procedures -- to say that I am splendidly blessed by the young women who guide Julia through therapy each and every day is so much less than the experience of having them in our lives. All was done and ready by the time Bethany made it to our house and I was out the door so meet my supper companions by 6:20.

And Julia ate her supper, play with Bethany, and got through the remainder of the evening ritual before bedtime and was asleep before I made it back in the house by 8:30.

And it was delightful. It is not that David fulfilled all of my needs for friends and acquaintances. He was not everything to me all the time, but he did provide a solid partner. With his companionship, I could still miss a good talk with my girlfriends, or a good talk about some topic that did not interest him at all. But I could, when necessary, survive on little else but his companionship and be satisfied. Without him, my loneliness is my constant, broken at times with conversations that splash into the bottom pit that is my neediness. Marcia’s check in phone calls, Lisa’s texts, Amy’s walks, tea with Mary, a short conversation with a therapist, the morning’s walk around the block with the dog and parents who see their kids off on our school bus, email from my Findhorn friends, a visit with Cheshire, even a friendly interchange at a shop -- this is what feeds me but it is a starvation diet. Not that I am not grateful for each and every interchange. They are keeping me alive. They connect me with what is outside of me and feed my optimism that I will either learn to be satisfied with this level of companionship or that I am still capable of companionship on some level and will someday have all that i crave. I don’t want the level of companionship that I live with now to be what I have for the rest of my life and I will do what I can to have what I want. But in the changing what can be changed and accepting what can’t, I see that this may fall into the later category.

And I wonder if I have had all the joy that has been allotted to this life for me. This is not a poor me, self indulgent with heaps of self pity statement, just a wondering. Some people have much less joy that I have experienced and there are still so many things that make me happy and willing to pick up my tasks for another day.

I have been wondering about apps. Iphone, ipad apps. Not too long ago, I read an article about apps for autistic kids and followed some links to a confusing array of possibilities. It was overwhelming and I was sure it was not going to be an easy jungle to make my way through. I put the idea aside but definitely sent the request to the universe for some help. And it arrived today. The help, that is, in the form of Julia’s speech therapist who showed us a conversation app that she is beginning to use in therapy. I have been on the fence about buying an iphone, which I want but have not been able to fully justify. I’ve never spent money on a new phone. I have always picked one of the “free” phones offered by whatever carrier I have used. But I have had a hankering, a wanting a new toy wanting, for an iphone. After watching Julia interact with this conversation app, I am ready to buy an iphone tomorrow!

The program shows a picture, of a child holding a snail, for example. And asks the player to choose among three things that might be appropriate to begin a conversation with this child. One choice is a statement similar to what Julia would usually say. In this snail conversation, the statement was “Your hands are dirty.” A choice that would not encourage interchange but that is generally on topic. There are also two questions and the “right” answer, in this case was “What are you holding?” Clearly, none of the three possibilities are wrong, per se, but there is always one that is best for starting or continuing conversation. Most of us gravitate to the best conversation starter, missing now and again, but managing to make out way through conversations all the time. It is how we survive as social animals and we do it naturally. How incredible this is! But a kid like Julia, kids on the autism spectrum, don’t get it. They don’t naturally learn conversation. They blurt out observations or facts that are interesting to them, trying and failing to interest other people. It is miserable as a parent to watch these misshapened attempts at connections. And so, Julia listens to social stories, she and her therapist and I work on scripts, but conversations rarely follow scripts. It is so much improvisation and kids with autism are so woefully bad at improvisation.

This program that she used yesterday gives the three possible things to say, provides reasons for why one is the best, allows the child to record the best statement, and after a few interchanges, provides an entire conversation that can be played back. A complete and appropriate conversation that the child has helped to put together. In the child’s own voice. And I teared up to hear two simple and appropriate interchanges with Julia’s voice as one of the speakers. And she was fascinated. I believe that she can learn how to have a conversation which is a step to learning how to have a friend. But I also know that we have not yet found the tools that she can use for the learning. Maybe now we have. Yes, it is still all about improvisation, and she is still not good at that, but I see her generalizing all the time in her reading now. If she can generalize with reading, there is a decent chance that she can do it to learn to make friend as well. And she does so want friends.

2011-12-13T08:35:00.001-06:00

Kitchen pictures in House blog. Still in progress and looking so barren right now, but give me another week!

2011-12-12T17:49:00.000-06:00

Posted on facebook, but as relevant here: I'm looking for a new wii game for Julia. A game that is not about violence to people or things, that is about building or making a world or something, that might have, dare I ask, some good lessons and beautiful graphics. Oh, and probably does not have a tv or movie tie in. Have I totally gone over the edge?

2011-12-12T09:26:00.000-06:00

Every so often I check who is following the blog. The other day a blogger named Wrathnar the Unreasonable joined. Umm, did you know Julia in a past life? Wrathnar has joined a number of interesting and incredibly diverse websites. I await a comment.

And comments, Sharyn, yes, would that I could have read what I write now five years ago. I am pleased with my deliberateness in writing it all down. Well, some of it down. I’ve collect almost all of my blog entries in monthly files and I will begin sifting through them with the idea of putting them together somehow. I can’t say much more than that about the process. It will have its own way.

Notes on Concerta: Julia is now taking 36 mgs. which is a lower dose than she was on with Adderall even though the mgs are higher. At home, she is not rubbing her fingers together as much. She is telling me about how much parts of her body itches. I am hoping this is the self-awareness that we’ve worked so hard to develop. I just wrote a note to her teacher, saying the I really wanted Julia to succeed today at staying in school. Do I want them to cheat? No, but she need to succeed a bit. She has some very itchy places that are healing. What I would give for healing without so much challenge.

Why is healing so hard?

Yeah, ok. I get it.

Julia has stones in her pockets today. A pink stone called rhodochrosite. I found this on its healing power : Solid to clear pink. Gentle, yet probably the most vibrant loving stone to heal the heart chakra, especially for giving/receiving love. Also for loneliness, loss, heartache, fear, insecurities, inner-child issues, abuse, and incest. Helps self-forgiveness and trust issues, spiritual and self love, desire to live, purpose. Best worn 24 hrs a day. Electro magnetic. Stronger than Rose Quartz. Solar plexus, stomach (anxiety), food addictions, anorexia, asthma, eyesight (especially emotional not-seeing, to avoid pain). Thymus. Open the hand healing chakras. Specialized uses to detox / heal blood, liver and cancer. And a green stone called Chrysoprase. Chrysoprase is used to speed the healing of any wound. Carry a Chrysoprase in a pocket to help heal. Also keep a Chrysoprase close to your bed at night to speed healing. Chrysoprase helps to make conscious what was unconscious. It strengthens the workings of insight and the higher consciousness, encourages hope and joy, helps clarify problems, and has been used as a cure for restlessness.

Does this sound a bit crazy? But I have had friends who have used stones and gems for years. How often did I make fun a crystal collection? And yet, I have collected, without really thinking about it, stones from favorite places, some near, some far. Stones that live in my bedroom in a little pile or reside by my front door in a nook that was built for a phone connection and now has shells and stones. I have collected, placed, and lived with these stones instinctively, consistently. As if I did it intentionally. As if they were part of my private rituals. And if anyone would have asked me about them, although no one ever has, I would say that they were just stones, rocks, things I picked up walking in a field near Avebury or the dusty ground at Tiwanaku or in Prospect Park in Brooklyn. Is it any wonder then, that a move from unintentional collection to stuffing particular stones in Julia’s pockets is not too difficult for me? I feel a little crazy. I certainly am more than a bit desperate to engage heaven and earth to heal my child. Storming the heavens has taken on so much broader a meaning. Then again, what stones should I be carrying?

This weekend, Julia saw Happy Feet 2, bought a Buddha coloring book, and decorated for Christmas. She is also hatching a dinosaur egg in a glass of water. We added another 10 flash cards to her addition facts and she read a story in Highlights about Hanukah is space. Full days for us. And she tells me she dreams about cookies.

And thanks for asking about the kitchen, Sharyn. I had a vague grand plan to post pictures of the finished kitchen weeks ago, but as the end of the process has dragged on, I have been, in turn, at a loss for patience, not really seeing the progress, not wanting to document little gains, embarrassed that I just want transformation and not process. And a bit sad too. Sad that I am making this house more of what we wanted for just me. Me and Julia, of course, but me. Sad, that David will not get to use it. I allow myself a bit of that wallowing now and then.

Putting some things away, however, and still having Ed in my house numerous times during the week, I am noticing where adjustment need to be made. And that is very good. The dishwasher, reinstalled on Friday!!, door rubs just a bit on the cabinet next to it. The spice rack needs adjustment. The trash/recycle pull out cabinet does not close like the other drawers, and neither does the pull out cabinet for cans.

All this to say, that another round of in process pictures is warranted. I’ll let you know when they are posted.

I am sorting out in my head the difference between magical thinking and the learnings of life. It is not that the kitchen is taking so long past the final drop dead due date to teach me anything, but I can glean a few learnings from the process. Maybe everyone else knows this. Maybe I am just slow. But there it is. I am getting something. Four months of lying fallow for a bit of wisdom.

2011-12-11T22:17:00.001-06:00

"Rawr means I love you in dinosaur" I love it! Thank you, Bobbi Jo.

Saturday was busy. I started in earnest to move into the kitchen while Julia had a therapy morning. No, the kitchen is not complete which probably means no baking until after Cheshire comes home on the 18th. A small piece of countertop was not the correct size and it will be another week before it comes in. And there is still trim work and adjustment that is waiting. I have given up on an actual drop dead date and the only irritation comes from the fact that Ed will be in the house this next week and I’d like to do the cleaning and moving in on my own schedule, rather than work around his. I need the discipline of sharing for the week.

Today, I put away baking pans and serving trays, organized the pots into two drawers, washed the wine glasses from my mother’s estate pausing briefly to try to remember why she only had two tall champagne flutes and congratulating myself that I only lost once of the glasses (although how one broke and no more is a bit of a mystery). These will go in my glass-doored cabinet along with a few pretties. I expect that I will rearrange in time when I find out what I want close to what I am thinking of, but for now, I am sticking to a plan that I devised when I designed the kitchen. The order of putting away has more to do with what cabinets I can fill than anything else. It is random and not incredibly useful

I have six more kitchen boxes. Much of what needs coming in goes on the shelves which are nearly finished. They are up and strong but there is sanding of the fill and painting. Not big tasks but messy and needing them to be empty until it is finished. And I am longing like a whinny child to fill them up.

Julia has been in a happy mood all weekend. She did scratch some today when her newest therapist was with her. Still slowly, and a day of scratching sends number of sores back to the beginning. I explain over and over. Does she hear any of it? Does it matter? Those sores that begin to heal go through a lump/bump phase that is so perfect for scratching. I hope that we get some answers when we see the pediatric dermatologist. I wonder how much will be healed by the time our appointment on the 23rd comes but then, these sores take so long to heal. There will be something for a doc to look at.

Last week, Julia showed herself to be the same self as she who came home 5 years ago. I was bandaging and bandaiding after a shower, when Julia scratched a different part of her body than I was working on, so quickly did those hands fly and attack that I did not really see her do it. I asked to see the place and sure enough a almost healed bump was bleeding. But also, the areas around the bump was very red and two smaller bumps had been raised. I asked Julia to do what she did again so that I could see how hard her scratched. I did not really think that she had scratched hard. She refused to show me, I insisted. I was neither angry or upset, just inquisitive. I kept insisting, she refused. I told her that she should stand in the bathroom (where she was) until she showed me. I brushed my teeth, and asked. I put on moisturizer and asked. I went into the bedroom and checked on her every 15 minutes, expecting each time for her to give in. Finally, after standing for an hour, I went into her and talked to her until she showed me a little something, although not how she really scratched. I backed down at that point and put her to bed. Amazing how stubborn she can still be. How stubborn she always has been. That will of hers scared me that night. She used to be like that all the time. When she had no attachment to us. To me. What would she be like, unattached, without love, without devotion, if she was 14? 16? 20? Julia is not the same child who was so stubborn five years ago. She likes cuddling into my arms. She leans against me, casually, as if I belong to her. She looks to me for help, for guidance, for comfort, for care. And this looking to me is what she needs, even if it takes a long time to grow. And for the stubbornness, that too will help her, at the right time and in the right place.

2011-12-09T16:42:00.003-06:00

Julia was at school the entire day today, losing two chances, but holding on to that third. She is spending her entire therapy time in Christmas bliss. She and Ellen walked the dog and went on a Christmas hunt, finding houses lit and decorated.

I found the necessary extension chords to light our lights outside and the candles inside.

And once inside, Julia and Ellen decorated and lit the little trees that I've been collecting for years and which went so well in our Indy house. They have languished in Madison but now that the bookcases have shelves under the windows the little trees have a good home. I have tiny light sets that I've bought at after Christmas sales and lots of little decorations.

I pause to wonder if Julia was ready for this kind of celebration last year. I have no idea. We were hurting and it was enough to live through the days. She did make splendid dino decorations for our little tree, so she might have been able to enjoy it, if we could have. But it is this year and we have now. Now. Today. This year.

2011-12-09T09:27:00.002-06:00

These days are not conducive to sitting to write and I have been too lazy, too tired to exercise the discipline necessary. I am up so early and tending to tasks and chores of the house. I have met my meditation and exercise goals most days. I have picked Julia up from school a few time for losing her chances. I have started the great hunt to make Christmas. I am still bathing and bandaging Julia’s wounded body. And my eyes close too close to the time that Julia’s eyes close with all good intentions of getting up again out of the bed to taps on these keys.

The outside gets colder and there is frost on the cars and on what remains of the lawns but no snow yet. Soon. I am sure. But not yet. I put up a few lights yesterday. Yes, Christmas lights, of course, but it struck me a few years ago that putting up lights and decorating the house is such an incredibly pagan thing to do. I am not really celebrating the birth of a sacred babe, but furiously preserving the light against the great dark and cold of winter. Sure, a creche can be put up, a reminder of the “real” celebration that is Christmas, but at least for me, and I dare say for many others, it is not the creche that we long for, that we can’t wait for each year. It is the twinkle of colored lights, the smell of an evergreen in the house, mystery packages and children who search through the house for “santa’s” hiding place. It is the hugs and kisses of those coming home, the conversations that catch us up, the food -- the glorious food, planned for, made time for, cooked for days, allowed only because of the holiday. Food that mothers and grandmothers made, food that is sent from far away only once a year. It is all so sensual, so of this body, so of this earthly plane.

It is the time of year and also that I’ve been deprived of a completely working kitchen that all I can think of is the food! I am hoping that I can do some baking and some mailing of my baked goods, but that needs to depend on how long it takes me to move back into the kitchen and put the house in order. (And clean because my cleaning lady has changed her phone number and I have no idea how to get in touch with her. I haven’t seen her since the kitchen remodel started -- okay only two months -- but enough time to lose someone.) But even if I do no baking before Cheshire comes home, she wants to do some to bring back to New York. And it is not just the baking but the menu for Christmas brunch. She is leaving on Christmas day in the afternoon (can it be a tradition to buy those cheap airplane? How we stretch our economic gifts.) and so, brunch with Mary and Robert is the plan. Linde too will be with us and the house will be wonderfully full. I hope it will be very noisy!

But the food, the food! Combing through recipes, I found a lovely grapefruit salad, perfect for a meal that has feet in the morning and afternoon. But even the contemplation of it sent me back, sent me to remembering that this will be the first year in the last thirty that there will be no Florida grapefruit from grandpa. David’s father. And I am chilled to remember that everyone is dead. Not everyone, but everyone who would remember to do that. There is no moving forward without having a touch with what is behind. No unmitigated joy. No fiery joy without the damp of what is lost.

And I don’t mean to deny any religious inclination to the winter holidays. Not at all. Actually, for years, I’ve felt that Christianity makes so much of a babe’s birthday, when it is his parents who should be celebrated. Yes, birthdays are for children, for the one who is born, but as I get older, I’ve come to believe that birthdays should be the real mothers and fathers days, maybe a real ancestors day. What kind of parents were Mary and Joseph that they could raise a son who could have the courage to preach and perform miracles and change the world’s order? How did they encourage that child? What was his learning? How much love did they pour into him that he could grow up and pour love into the world? Would that every parent take their lesson to heart, although clearly self-preservation was not among their lessons. Talk about roots and wings! Maybe only now, do I understand a little something about joy and loss, raising and growing together and then letting go. No, I have not lost a child, but I can see the possibility of such a losing. And I am not that sad today. Not today.

Back to the sensual, my delight in the pagan joy of light. In the early days of my relationship with David, I had to give up my utter joy of Christmas. As a kid, David felt the outsiders view of the holiday. I don’t think that Hanukah was celebrated with as much gusto as it is today, and although his parents put up a tree “for the children” a few times, by the time I met David, he wanted nothing to do with the winter holidays. Those first years we did not have a tree although a small tree crept into our lives before Cheshire was born. It was Cheshire that wanted lights on the house like everyone else and David allowed something “tasteful.” I don’t know if given complete freedom if I would have stayed with tasteful or would have exploded into Jersey excess. Tasteful has now become my own mantra, even when I long for the lights. So, I put up a few lights, a bit of greenery, and some lanterns outside. I try to separate Hanukah from Christmas -- doing more generic decorating and even Hanukah decorating during the Jewish holiday week and then sliding into the reds and greens of Christmas. Years like this one, it is impossible with Hanukah forming a perfect parenthesis around Christmas. And this year is about reclaiming, carving out something new, adapting the old to the new. And Julia is very much into decorating this year. She saw the Christmas boxes and she could talk about nothing else last night. I think she would have been the same way last year, but before that, she didn’t really understand.

It was Cheshire that dragged us into Christmas. She was seven when she insisted on a glorious angel for the top of our tree. And we made yearly excursions to stores and shops for some special decoration. And lights! In the early days, I put no lights on the tree. In deference to David although now that I think of it, once a tree came into the house, what difference did lights make?

By the time, Cheshire was 7 or 8, the routine of Christmas morning, usually at our house, or somewhere where we had put up a tree. We had a few law school years of driving out to Jersey for Christmas. We would stay at David’s father’s house to give us some private family time as his parents were in Florida that time of year. We would bring out decorations and tree stand and lights out from Indiana, along with Cheshire’s gifts which had to be surreptitiously packed into the trunk. We’d buy and put up a Jersey tree and later vacuum and clean every needle so that his father would not know we brought a tree into the house. We had a ritual of setting up the video camera and our breakfast before allowing Cheshire into the room. Oh, she complained and whined and pleaded. For so many year’s worth of Christmas mornings.

To think of it now, it was all so delightful. David mellowed into Christmas -- he had no choice, to be sure. I mellowed out of the Christmases of my family of origin. We arrived upon what felt right for us, not some arbitrary midpoint, but some melange of celebration. Celebration of light. Celebration of our little family. Celebration of those we loved. And perhaps of raising and growing together and letting go. No joy without pain, but I will leave a window slightly cracked open just in case some joy wants to come in.

2011-12-08T12:46:00.002-06:00

Decorating the outside with lights and candles against the coming cold and the dark, dark days and nights. Listening to Michael from Mountains. Countertop gets delivered today and Ed will be working for the next two days to hopefully finish everything! Making my lists of gifts, of groceries, of replacement bulbs, of a second pair of jeans. Hauling the four boxes that have Christmas in them up the basement stairs and searching for sufficient extension cords.

It will be Christmas this year.

2011-12-06T12:51:00.008-06:00

2011-12-05T09:20:00.001-06:00

Framing some Julia art this weekend. Hanging pictures this weekend and today. Pictures and knick-knacks are scattered all over. Every where. Making for hazardous walking. Almost impossible for Julia. Must hang today and start clearing debris away!

Started a meditation regimen using Deepak Chopra’s “The Spontaneous Fulfillment of Desire: Harnessing the Infinite Power of Coincidence”. Twice daily meditation plus some exercises. I have long been interested in coincidences and Chopra, although at times more ego driven that I am comfortable with, has a lovely voice and interesting ideas.

Julia and I had a very good weekend together. We were busy -- helping to set up for the school “dance” on Saturday, running to church and then back to the dance in the evening. Julia enjoyed watching the popcorn machine and the ladies sewing our school’s signature hats probably more than the loud music and darkly lit gym. Yesterday, we went to a cheesy, commercial, too expensive dinosaur exhibit which Julia loved. She is ever amazing in the dinos she can spot, she engaged a dinosaur sculptor in conversation (a bit stilled but a conversation nonetheless), bought a small souvenir with her own money, and I realized that she can recognize and name the continents at least when a dinosaur lived there. It was so lovely to have a good time with her. I hold me breath hoping it will continue.

And lastly, at my last session with Ellen, I asked my spirit guides what I had to do to give me more strength and purpose and resiliency. And they laughed at me! They said that it was all there, only waiting for me to move out and do what I wanted to do. I have been mulling this answer over for a week. At first in a whiny way -- "I am not strong at all." -- and then, I became pretty silly -- "Time to climb the mountain, sing the aria, and take that foster parenting class" -- and now, a bit sober. Watching Julia's body heal, after her self inflicted torment, I have been instructed in healing. Slow. A few steps backwards all the time. Patience building. And small celebrations when the skin closes and only a bruise is left to mend. It maybe that my soul is in the bruising phase.

2011-12-04T16:08:00.001-06:00

Our cat, Didi Chi, ran away last Spring. Julia looked for him and called for him every time we took the dog on a walk through the summer and fall. This morning, for the first time, as we walked the dog, she suggested that maybe we should get another kitten. I wonder if Santa was listening???

2011-12-03T07:33:00.000-06:00

Once again, I thought I would sleep in today. Our first therapist comes at 9 and we could both use a lie in until 8, but no such luck. Even without the alarm, I am ready for action before 6. Drat!!

Julia lasted until lunch time yesterday. She had three chances/ three warnings that she was picking or scratching. After her chances were used up, at 11:55, I was called and I collected my teary little girl from the nurse’s office at school. Although I was really sad that she didn’t make it through the whole day, this was the outcome that we -- me, her therapists and teachers -- had hoped for. It’s been great that she has managed to stay in school through two weeks of reminders and redirection, the scratching continues. She needed to feel the consequences, know that it was serious. I hope that this impressed upon her how serious her picking is.

She cried a bit in the car. She told me she was sad and also angry. Then, she ate what remained of her lunch. We did errands and then went home to settle into doing some school work.

I had planned to spend the afternoon sorting pictures to hang on the walls and framing some posters and some of Julia’s art. This kept me in one room most of the time and I could oversee her work without sitting with her all the time. Julia enjoys working with me too much and I don’t want this consequence to turn into a fun afternoon with mom. We did cuddle on the couch to read and answer questions that her teacher put on post it notes in a book. She kept up her work for almost two hours before I let her spend some time coloring.

This is all so “love and logic” based. I never expected to be doing a real L&L intervention, but here we are. It is hard. My first impulse is so much to shore up the deficits, to support and coddle, and I think that is the impulse of most of Julia’s team at school and at therapy. Julia’s sweetness and spunkiness draws adults to her and they want to protect her. And so, this “intervention” is hard. Okay, every intervention is hard. Julia needs to learn that she is the one responsible for her body. Right now, it is me and teachers and therapists who are responsible, and yet, Julia is the only one who can really heal her body. Please, please, let her learn that! And quickly.

Quick side note of a conversation that Ellen, therapist, told me last night:

Julia was on Ellen’s lap and they were taking some quiet time together. Ellen has been with us for more than two years and Julia adores her. They do a lot of art projects together and Ellen has taught Julia much more than I have about making art.

Julia: It’s all my fault.

Ellen: What is all your fault?

Julia: My body is ruined and it is all my fault

Ellen (tearing up): It’s not all your fault.

Julia sniffed a bit and was quiet. Ellen said a few more soothing, sweet things, feeling very emotional.

Julia: Ellen, you smell like noodles.

Ellen: i had noodle soup for lunch! (And the moment was over)

Julia has full intentions, at least for today, of being in school ALL of Monday. We’ll see if she can pull it off. I know that this is still a challenge for her, but each day with minimal scratching is a healing day for another scab or two. She is not healing quickly by any means but there is slow progress being made. I stopped counting bandaids a long time ago, but there are less of them, at least by a few. I am using a Kielh’s moisturizer which is very mild and without any scent on the parts of her body that were most effected by the steroid cream. After almost a week of twice daily application, that skin is looking a bit better. Amy also gave me Wound & Itch Ointment from Wildwood Institute. After trying on a few scabs, i am using it all over her body. The ingredients are plaintain, yarrow, calendula, rose hip seed oil, olive oil, and lavender essential oil. Some of the ingredients have been recommended to me before by other friends. It is not irritating for sure. It seems to calm the sores and because it comes in a little tin, Julia can carry it around and use it when she needs it. It provides her with some power over her itchies. I’ve heard some glowing reports of its efficacy and would so like to add mine.

Julia also carries around little cards with alternative activities for her to do with her hands when she wants to scratch. Larger versions of the list are pinned up all over the house, at school, and at the clinic. And Julia has becomes a good enough student to make use of these lists and suggestions if she can remain in her rational mind.

We have a busy day today. I hope to keep Julia busy until she is tuckered out tonight. Busy and not scratching or picking. Another healing day would be lovely.

2011-12-02T07:38:00.001-06:00

Hi Deb,

I feel like I am sending my kid to the gallows! We've talked about the new procedure all night and morning. She is as ready as she can be. Her salve is in her bag. Also, there is a small laminated card that has suggestion for what she can do with her hands. She and her therapists came up with the list. She can carry that or put it on her desk. Or do whatever you think is appropriate. She did not scratch during the night.

Good luck!
Suzanne
I will be close to the phone all day

Hi Suzanne,

Oh my! I know - I am just thinking about today, too. I am going to go over the plan again with Julia before school starts. We have a larger colored copy of the suggestions and we have been reviewing them each day. The laminated copy will be great, too. We can keep that in her pouch that we carry the manipulatives in.

I will keep you posted. Things will be okay. Whatever happens we will be okay here and if we need to change anything at anytime let me know. We are flexible.

Hang in there!

Deb

Thanks, Deb. You are the best!

Suzanne

Updated plan for Julia’s Scratching/Picking-until Winter Break:

*Julia will lose a chance in school for scratching/picking, when she picks in the bathroom, or any time that someone notices that she has picked on a scab.

*She will be sent home after 3 chances are taken away.

*Julia has a laminated card with reminders for what she can do to keep her hands occupied. There is also a larger sheet with the reminders on it. Please review this frequently throughout the day. If she asks to do one of the activities, allow her to do it right away.

*If Julia asks for salve, it will be in her backpack. Administer on irritated area with gloves and reapply band-aid.

email from the clerks office

2011-12-01T10:31:00.000-06:00

Suzanne,
We hope this email finds you and Julia well. It appears that winter is coming though many of us are in denial. We were sad to part with David's items from his office, perhaps we hung onto too long, but know they hold so many memories for you. As the holiday nears we are discussing our gift exchange. I think David thought we were a little crazy. The white elephant exchange is a highlight for the office. There was some curiosity whether you kept the 3 foot decorated frog that David won one year and I volunteered to ask. Again, hoping you are well and please know we miss him too.
T.

Hello T.,

It is very sweet of you to write and ask about us. Julia and I are doing well. Healing takes such a long time and we have good times and challenging times but we are moving forward. This year's winter holidays will be better than last year's as we carve out new traditions and let the memories of all of our Thanksgivings and Hanukahs and Christmases show around the edges. Like lace peeking out from beneath a skirt. I can still be brought to tears in an instant but we are laughing more as well.

Thank you for saying what you did about David's office things. I waited so long before picking them up. Retrieving those boxes put an end to that part of his life. It was taking him away from all of you, that part of him that did not involve me or our girls. It was sweet to see the souvenirs that I brought back for him from Vietnam and Bolivia, trips that I made without him. It was sweet to see the pictures of the girls that sat on his desk. To paraphrase Joan Didion, those things won't be in the office when he comes back. Magical thinking? Very much so. Not conscious, at least not altogether conscious, and it had to be done.

As for the Christmas frog, I hope you will all forgive me for not sending someone an email before I got rid of it. David was so amused when he brought it home, and although I was not crazy about it, we celebrated it as a rather strange good luck token. Not much about 2009 was lucky, as it turned out, and I really didn't want to keep it. It was untaken in my yard sale last summer and a few weeks ago, I delivered it to St. Vinnie's on Park. If it makes its way back to the clerks office Christmas gift exchange this year, you must tell me so that I can have a good chuckle.

Thank you for all your good thoughts and support. Thanks for missing David. That is such a silly thing to say but . . . it is how it feels.

Please extend my best wishes to all those in the clerks office and also to the Justices, especially the Chief (of whom I miss hearing about so much), for the coming holidays.

All the best,

Suzanne

School email on the coming consequences

2011-12-01T10:27:00.002-06:00

Hi Deb,
Interested to hear how Julia is doing/ did today.

I had a long talk with our psychologist on our IDS team. She strongly suggests upping the consequences of Julia's scratching so that she experiences the consequences. I admit to being reluctant to do this -- I want her to succeed and not "fail" but for her to remember and to realize how important the consequences of her present course is, I have to agree. We have three weeks before winter break and this may be a very good time frame for this experiment. That is, if it doesn't work, we will regroup and try some other strategy next semester. She suggested that Julia lose chances in school for scratching/picking, and that she also lose a chance when she picks in the bathroom, or any time that someone notices that she has picked on a scab. At the same time, she will lose dinosaurs at home when the therapists or I observe her scratching or when I see that a scab has been picked. (I do have a plan for dino reprieve every so often so we don't run out of dinosaurs.) How do you feel about this? Do you want to check with the school team and see if they are ready to go to this extreme, knowing that Julia will probably be sent home a number of times in order to learn.

I'd also ask that if we do this, that you send home some work sheets -- cursive, spelling, math, anything really -- so that I can spend her "school time" at home doing school-type work.

Question: Do you have any idea where the salve (in a little tin) that I sent to school yesterday went to? Julia was supposed to bring it home at the end of the day. I wanted her to have it to use both at school and at home and right now I just have one tin of it.

Finally, and on a much brighter note, Julia is really sounding out words now! She did it by herself and without any prompting for her spelling words and as we were reading last night. I didn't know if it would ever happen and I know that I have Shannon and all of you to thank for incredible perseverance and hard work. Listening to Julia put sounds together and make words is incredible music to my ears!
Suzanne

Hi Suzanne,
Julia is doing okay from what I have heard, but she gets to her scabs so quickly that they start bleeding before we can even give the first redirection. We can start that tomorrow - I think having to go home may make her realize this, but we will see. There is a sub for Ms. Stork (she has been pretty sick lately), so the morning was a little different for her. So far she has had one chance taken away.

I will send home the salve today, I had shown it to the nurse and she had it in her office (I have to do that with anything that comes in from home). We are going to keep it in her locker and send it home each night.

I will get together a folder of activities she can work on at home if she gets sent home. How about I send it with you today and you will have it there as needed? Does that work?

Glad to hear she is sounding out words! She seems to be improving so much . I was so happy when she did the reading to herself and answering the questions on sticky notes on Monday!

We have a presentation this afternoon so I will back up Julia's things to have ready so she can go to the office from the LMC.
Talk to you soon,
Deb

Suzanne,
Just want to clarify - she would lose a chance if she even picks/scratches (no opportunity for alternative).
Is that correct?
Deb

Deb,

Yes. She loses a chance when she picks and scratches without an opportunity for redirection.

And I understand about how quickly she can bloody herself. Part of the problem is that her scabs are so fragile but just rubbing them rather gently can cause them to burst open.

I am not looking forward to this but I think we must do it. I am ready to pray hard for realization and change. Thank you so much for all your support.

Suzanne

2011-11-30T20:58:00.005-06:00

Never enough time with Cheshire but every minute is precious.

Cheshire's friend, Chris, came down to be with us on Friday and Saturday.

This picture reminds me of a high school senior picture. So, so lovely.

And together, they are such a lovely picture.

Weekend pictures of Julia

2011-11-30T18:23:00.004-06:00

Julia and I cast tall shadows on the Havre de Grace boardwalk.

Julia so rarely tries hanging from play equipment. She did not spend too long a time playing on the equipment but she did try to go hand over hand across the long bar.

Three silly faces of Julia.

I love how happy this picture looks.

And here complete silliness.

2011-11-30T18:14:00.003-06:00

Amidst the turmoil of picking on her skin, Julia can surprise me. I am so aware that we are not moving ahead and so scared that this is a plateau in her development that could spell the end of development, and then she does some mind blowing thing. Tonight, she was sounding out her spelling words. Really making each sound and putting them together. This is the fruit of months of work with her reading teacher at school whose patience and perseverance and love of Julia is fully visible each time she sees my girl. And so, Ch-0-p, chop, ch-ar-t, chart, m-u-ch, much, and so on and so on. Making me so happy. Me of so little faith.

2011-11-30T16:40:00.001-06:00

From Sunday (27 November 2011): Ashley, our newest therapist, is over for the first session after our week away. Julia is so excited to see her. Ya’ think she is tired of her mother?? Ashley asked Julia about her week away and also who those people -- Lisa, Nick and Michael -- are. Julia did not know what to say. I helped out, asking if they were her aunt and uncle or her cousins. She said no to those suggestions. Finally, she said, “They are my special family. And I love them.”

And now, today. I am at the surgery center waiting for my every 10 year colonoscopy. I have some waiting around and down time but if all goes well I will be done quickly. The benefit of coming in early. From what I remember 10 year ago, there wasn’t as much prep as there is now. I had instructions to change my eating habits for 5 days before the procedure, and to change to a diet which is just toxic to my health and weight -- no fiber, protein, milk products, white rice, white potatoes. They did not say all the sugar that I wanted, but refined sugar products would have fit the bill. By Sunday, I was pretty disgusted with the limitations and so I started fasting. Between a few days of fasting and the electrolyte solution last night, I am probably cleaner inside than I have ever been.

The IV has been started and I sit waiting. Amy brought be here this morning and she will come back to get me. The need for a friend to drive and listen to the doctor when the procedure is over which I knew about from the last time and which I heard about when the appointment was made in August was another jolt. This was what a partner did/does. In the surgery center now, as they ask questions, put on my bracelet, start the IV, I have such memories of David’s hospitalizations. There is no reason but i want to tell the nurses about David -- a strange impulse. Maybe I just don’t want to hold the memories alone.

But I do.

Julia did well in math group yesterday but she did manage some picking in the bathroom. I have to call her doctor today to find out whether I can continue to give her benydryl. Right now, she is taking it in the morning and before bed. I think it does help although it lowers her energy. A third dose in the middle of the school day might make the end of the day easier for her, might keep her from picking on the school bus. In phone tag with her doc, I am getting a referral to dermatology, although I don’t hold out much hope for that. It may take a month or two for dermatology to get back to us, and this isn’t really a dermatological problem. I also dread going over the story three or four times for a new specialist, who could read it all in the chart but whose administrator, nurse, and nurse practitioner will want it spelled out for them.

Just met the doctor. A nice, quiet man, but without much bedside manner. Not that I need any for a test given once in ten years.

Again, I’ve been losing my temper with Julia over her picking. It is not just her picking but her silence when I ask what she is doing, or where she picked. A week’s worth of healing gone in a second. My frustration climbs and I cannot be a bad enough mother to impress on her how serious this is. I know. I know. It all does no good. And then I feel awful that I was so mean to her. A vicious cycle that does no good for no one.

For medication right now, I have been discouraged to use benedryl for a third time during the day but will get a refill on the antihistamine for her to take during the day. Amy also gave me a wound and itch salve which is made with all natural ingredients. It is in a little tin and Julia can take it to school to use giving her a measure of control over the circumstances.

I also had a long talk with our psychologist on the autism team today. Her advice is to hit her hard with the consequences. Very behavioral, feels awful but she says that it works and short term pain is work long term gain. She wants to reduce the number of chances Julia gets in school so to ensure that she is sent home on a regular basis until she makes the effort to control herself. Also, at home, to go back to the losing dinosaur consequences and to do it often, returning the dinosaurs once a week or so, but making the consequence swift and immediate. She also didn’t think I should drive Julia to school, rather I should consider taping on the gloves so that the don’t come off easily, and if I or the teachers find she has picked, as evidenced by blood, she loses a chance or a dinosaur whichever is appropriate. Really tough love. We will work on rules by the end of the week to start on the weekend.

And then there is the possibility that it is the Adderall (ADHD med) that is exacerbating the habit of picking into a tic. And I have a call into her drug doc for that one. I want to solve this. I want to get back to our life before bug bites. Last week, Michael (14 and thoughtful) asked, what are you going to do next summer? Good questions. Answer: Oy!

Early evening: I have a lovely and perfect colon and took a variety of naps afterwards. I was thinking of doing a bit of work but have tripped up the stairs twice and decided to lay low for the day. I put the car in the garage in expectation of some snow. Did not unpack any breakables today.

An adoption friend, whose daughter comes from the same orphanage that Julia does and a child who looks like she could be Julia’s blood relative, posted a picture of her daughter at five. A very mature looking picture in the way that kids can strike a pose and suddenly look like adults. A magical insight of the future. She looked mature and knowing. And because she looks like Julia, it gives me certain pain. I have never seen such a look on Julia. At five this child looks years beyond Julia at 10. And it send me to worry and fret. What will the future bring to my girl. It is almost not a question. Just a wonder.

2011-11-26T23:28:00.000-06:00

Last day in Maryland and traveling home.

A facebook friend posted about her 25th annual garage sale. Through rain or shine, good times and bad, she has been passing on her stuff for a pittance and making a party out of it. Comes early and share our donuts. They are probably home made. I can’t imagine such a tradition and to make it fun? Not me at all, but this morning I woke up with ideas about an after Christmas party and since Hanukah and Christmas coincide this year . . . well, just that ideas like that are closer to me. An informal gathering to say many thank yous, to celebrate the winter season of lights, to share the new kitchen renovation, to cook a lot and have a full house, to chase the sadness and fill the house with cheer. This time with Lisa and family, and Cheshire and Chris has been lovely, but sadness continues to surface. Sadness now has layers -- just missing David is still there, but another sadness of moving on, feeling us moving on -- me with this year and the kitchen, Cheshire with beginning school very soon, Julia and reading and her numbers, and this battle of scabs and scratching. And I have shared none of this with David. If he appeared today, it would take days to fill him in. I/we are living through things that he was not any part of at all. And the awareness that there will be more and more of these. I am moving so far away from him that his influence/opinion/reference dims to nothing. I know that this is natural, this is what picking up and moving on is all about. But it is still sad. Still painful.

And when I am with Lisa and Cheshire, I am not lonely. There are others too with whom I register contentment. Who push me out of loneliness. How many times can I say that they are not David? And I know that they are not. And that is what is.

I still wonder about joy.

I am ready to go home after a week away. I have been on hold for weeks, waiting for the kitchen work to be done so that I could totally move back into the house and immerse myself in the next phase of the year. The scheduler from Home Depot called today. My countertop will be delivered on Thursday, December 1. Perhaps if I am lucky, Ed will be able to work on Thursday and Friday and finish up the kitchen. And so, here is the easiest indicator. Yes, change. Yes, shifting.

There is a shifting that has been shouting at me all week. After seeing Ellen, my spiritual healer, and feeling giddy releasing responsibility that I never appropriately held. So what is there after release. The lightness of being goes where?

Yesterday during a walk Julia told me that she “hated” that she had to love me so much. I have been on her, with her, telling her how to run her waking hours, and to keep her hands away from her itchy skin at night. She has had no autonomy, no independence. I have treated her like a young infant, and the strain is showing. Still, with three days of steroids in her body, bandaids on the scabs, and gloves on her hands, there is some healing. There are a few healthy scabs that need just a few more days. And I pray. And pray. And then I think that she can tell me how she hates me only because she trusts that I will tell her that her hate doesn’t matter. She is still mine. We still do the dance of attachment.

My jersey realtor called late on Friday, not to respond to my call of a few days earlier but to let me know that she lost a check that I had sent her. The repairs on the house, the hauling away of what was left there, the expenses of an empty house. She told me in passing that she had received a very low offer, not even worth calling me about, but worth the mention. Even though it is low, I take it as a good sign. There is someone out there looking. We will drop the price next week -- no where near the “offer” -- and I pray for that buyer who will be getting a great deal and will finally release me from inappropriate responsibility.

We listened to the beginning of a retreat given by Pema Chodron (SP). Much of what she spoke about resonated with me. Living intentionally like walking in the middle of the river. Letting go of the river banks -- hope on one side, despair on the other. Walking the middle path without reliance on that which can change. And that which can change is everything. Water logic, not rock logic. Not grasping, letting go, and letting it flow through. I want that life. I have touched it briefly now and then, but mostly during my most intense grief, but living that intentionally can spiral me into depression. It is risky, a life without bounds. It is painful to live in the present when the present is challenging and patience deserts me time after time. But hearing someone like Pema talk about what I have been struggling with, talking with Lisa and Nick and Terry, I am no where near alone. What I see as a lonely journey is a journey with so many who are traveling the same pathway. They are shadows at times. They are not near to offer daily support. Not near enough to sit together for the evening meal. They are not in my sight lines, but I need to remember their presence. Need to remember that we walk in the river alone but in company. Today, that feels like enough to sustain me. If I can do it, if I can become more accustomed to this middle way. Find some balance on the slippery rocks and the current which pushes me this way and that.

We are traveling on an empty plane which took off on time and will probably land on time. I am grateful for this small favor. It is the blessing of not traveling in tomorrow’s madness. We will have a long hour’s ride home but we should still be home before 10. After Lisa dropped us at the airport, all Julia could talk about is when Lisa and her family can visit us at our house, when we can go and visit them again. She wants them to come for Christmas and was so sad to hear that they would not come. I told her that Cheshire was coming out and that Linde would visit us as well. She perked up. I am so very grateful for a family of choice that loves and is loved by my spicy dragon.

2011-11-24T18:19:00.013-06:00

Thanksgiving 2011. Starting the day with place card making. Julia and I made thanksgiving dinosaur cards to mark our place at the table. Hers were much more interesting than mine, but she fixed a few of mine as well as doing her own.

During the cooking, we skyped with out missing girl who is out on the left coast learning to make movies.

Our table for 12, waiting for the food and the people.

Lisa commenting about the state of the dinner and the world.

My bright eyed girl. So much fun to visit and cook and eat together.

Julia ready to announce dinner.

Final preparation underway.

Taking the heat and staying in the kitchen.

So, no pictures of the dinner itself. I must have been too busy eating. We have a tradition of a group picture. On a lovely day, after dinner, waiting for dessert, the camera on a tripod, and here is our picture.

A rousing game of Apples-t0-Apples.

The kitchen table to be cleaned up.

And Julia once again coloring. This time dinosaurs and birds while we settle down to watch Monsoon Wedding.

2011-11-23T10:34:00.002-06:00

Days of talking, shopping, cooking, talking some more. I have kept Julia on a very short lease. Actually, no lease at all. She is my shadow, at my side day and night, but she still manages to scratch. I’ve left her asleep for the past two nights and went downstairs to join the others for an adult movie. It has been Julia’s only time alone. Yesterday morning and this morning I noticed bloodied spots. But to be fair, the skin where I’ve been using the steroid cream is dry, scaly, and very thin. So, two days ago, I stopped with the steroid cream and have been using only my facial moisturizer on her in those places that seem the worst. Of course, that means that there is probably more itching for Julia. And more itching means more attempts at scratching, and more scratching means more bloodied scabs with or without bandaids and bandages. To be fair, there is healing going on. Slow and in a few places. Julia’s left arm and lower left leg have one bandaid a piece on each. Many of the remaining sores are smaller than they were. These are very slow victories. I am hoping that being together this week will push healing forward, but it is a labyrinth of a healing process. Twists and turns and dead ends on every path. Keeping her very clean -- daily showers seems to help the itching more than it dries the skin. Giving her ice in a baggie can help in the late afternoon when itching gets intense. The facial moisturizer appears to be soothing some of the steroid-affected skin.

I spoke with her doctor this morning and she is going back on oral steroids for five days. Five days are what she tolerated the last time before becoming a bit wonky. I hate to put her back on the drugs but we both need some relief. Last night she slept with gloves on and this morning the leg that I could not wrap because it was too raw looked a little bit better. It is exhausting for me and awful for her.

On the estate front, I have no option but to continue until it is finished. “And I bow to the strength that flows within.” A comment from Sharyn. Strength that comes from releasing expectation and hope. It is hard to believe that after work long and hard that my brother will not willingly do the work, will not take the time to call me after I left a message for him. Instead, he called the lawyer and lied to him that I had not gotten in touch. I worked some yesterday at releasing my expectations regarding my brother. I have been concerned, and I have wondered about him. I am releasing all of that and there is strength that comes from such a release.

Julia is doing a travel journal as home work for missing this week in school. She has done three entries and they are all about making lists, shopping for food, cooking, and eating. Ummmm, I think she is accurately perceiving out activities this week. Someone in this house has done some life sketching in a big sketch book that Julia is now using. She is working on finishing one of the life drawings -- one without hands, feet or head. Her additions to the picture are not very good -- she has no idea of what fingers and feet look like or how they are attached to the body, but they are the correct size which is interesting to me. She can see how the body was made -- short, sketching strokes of the pencil and she is trying to copy it and not impose her sure heavy hand which is her usual style. We are in such a crisis mode right now with her body but every so often she does thing that remind me how much of an artist she is. How much she needs a wise teacher. How much is still inside waiting to be developed and to show itself.

2011-11-20T05:30:00.002-06:00

I write and think about resiliency. Didion writes about fragility. From my perspective they seem to be close to the same thing. Maybe different takes on the same theme. I think I was born with it, and life came at me in such a way to develop it. A sense of humor, someone said in chalice group at FUS, and certainly that is part of it. Generally, I was unaware of how powerful resiliency is. Was. Was until I lost it. It is as if it was eaten by locust swarming near my soul. I have had no idea of how to replant, cultivate, fertilize, and wait patiently for flowering.

Patience and time. And gentle guiding reminders. And a willingness to learn lessons again and again.

This past week. After the desperate maneuverings to rid myself of the burdens of my mother’s estate -- which are neither onerous nor gut wrenching but in which I perceive a quick sand situation from which I cannot imagine release -- only to discover that the personalities involved lack the generosity of spirit and possibility the ability to run the final lap of the marathon, I bow to the inevitability of continuing to the finish. This is not what I want. I did not need the lesson in endurance, but the lesson of perspective. What I chose to look at, to consider, to take into my heart to nurture. I still seem to need lessons in choice and choosing.

No one can make you feel inferior without your consent. ~Eleanor Roosevelt, 'This Is My Story,' 1937

To this I add, no one can make your feel awful or wonderful, broken or complete without your complicity.

For me that means turning away from what is selfish, from what is crazy and cruel and intentionally thoughtless, what wants the argument, the warfare, what does not feed me and focusing on the generous, the open spirited, the loving that pours into my experience. To my attorney and his mother who offer wise counsel, to the Mayor of Bloomfield who cut through reams of red tape, to my contractor whose has shared in my frustration and who gleefully inquired, “How did you do that?” with a permit in hand, to my realtor who proclaims that she “remains optimistic,” to my girlfriends who listen, to Marcia and late night assurances of sanity, to Mary and tea, to Julia’s therapists who insist that my newest “plan” is not a failure as I insist but only needs a bit of tweaking, to Traci and her reminder that I “am a good mother,” and as always, to Cheshire, to Lisa, to Nick.

And explaining to my sister in an email message, I write, “I have to laugh at myself . . . ,“ I gasp a small gasp and marvel that I’ve found a way, perhaps a mere footpath of a way back to some resiliency. I’ve found with ever so much help that if I just turn around, completely 180 degrees around, there is a view of ocean with spectacular crashing waves that fill my ears with heavenly song.

2011-11-19T22:51:00.001-06:00

Morning in Maryland. We arrived late last night. Julia did a good job traveling but complained loudly that her backpack was too heavy. Usually, her backpack is reserved for the toys, books, etc., that she wants to bring with her on a trip, but winter clothes take up so much room that even limiting what we took did not keep me in one carry on bag and my backpack. So, Julia carried her shoes, some shirts, and a sweatshirt. But not for that long and the bag was not unbearably heavy. And she did not have to carry it that far. Good for those travel muscles. She was exhausted when we finally got to Lisa’s car and she napped as we road to the house. Still, she woke up to eat a little something before she went to sleep.

This morning I’ve realized that although I remembered all the clothes, toys, drugs, etc., that we need, I did not bring any school related work. And trying to find a math game on line quickly is frustrating.

Tonight. A guitar concert. Acoustic. Peter Griggs who plays classical guitar and gives some what of a history of the instrument between tunes. He sang the song from the 50’s movie Black Orpheus. I’ve always heard the song in Portuguese. A sweet love song. Sad considering the movie. Griggs with a non-singer’s wispy voice. Breathy. A guitar player’s parlor voice without projection or ego.

Julia had a coloring book and some markers. And was able to sit through the entire concert.

2011-11-17T07:31:00.003-06:00

Julia lost 11 dinosaurs this morning. When I asked why she did not ask me for help in the middle of the night, she said she forgot.

Hard morning.

I admit to being so glad that she is on the bus and out of the house.

2011-11-16T22:43:00.002-06:00

Such a strange day. Wonderful at times, and challenging.

Julia lost no dinosaurs on Monday, lost 2 yesterday, and none today. Scabs are getting their chance to heal. She has talked about this "awful consequence" to teachers and therapists. Anyone who will listen, really. I keep saying that her body is more important than dinosaurs. I so hope she believes it.

Today is an early therapy day for Julia. She finished at 5, we had a quick dinner, and then had an evening to ourselves. We did homework. She has spelling to do. The words are a little bit harder this week -- tr- and dr- words, 5 and 6 letter words that are challenging for her to learn. She wrote them out again and then spelled them back to me as she looked at them. If she doesn't get them all perfectly learned by Friday, it will be the first time. She still has tomorrow.

She also had an interesting writing assignment that honestly was too advanced for her but we did it any way. She was able to complete it with a lot of support from me. She has to complete two sentences that made an observation and then furthered the idea of the observation. Julia completed the sentences this way:

1. I noticed that my mommy has brown eyes. I started to think about how we have different eyes.

2. I noticed that it is night. I started to think about having a sleep over.

3. I noticed that my teachers keep me safe. I started to think about how hard it is to listen.

I did not put any words into her mouth, or on her page. The kid had plenty of ideas. The challenge was for her to stay on topic with the second sentence. It took us a long time working to get it done. And we did it.

After homework, I taught her how to play war. Is there another name for the card game? Finally, finally, she can play it. The idea that the picture cards are always worth more than the number cards was tough for her, but we played for more than 20 minutes and had a very good time. I am bringing a deck of cards for the plane! I am also bringing Uno which she loves to play now.

When I think of all the nights that the three of us sat at the table playing Candyland with one marker, learning to take turns and to count the squares to move, I see how far this child has come. She is amazing. We've had such a tough fall and I have lost faith in my ability to parent her at times. I have felt myself failing her so often. Doing homework with her tonight and playing cards was just a delight.

I spent time -- way too much time -- talking to the mayor's office in Bloomfield, New Jersey. I did not start out with the mayor, but after I left messages with the building inspector, and his supervisor, and his supervisor, and his supervisor, there was no one to call but the mayor. And HE was in. I explained, I pleaded, I begged, and in less than an hour, my contractor got a call from the building inspector's office that he could come down and pick up his permit. My contractor said that it was not a happy call, and they would not give him an inspection date until next week which is technically beyond the 72 hour statutory limit, but my contractor was positively gleeful. He made me smile.

It is so nice not to be miserable.

Oh, and I went to sleep last night before 9. Thanks, Sharyn.