30 July 2011

Saturday evening: First night at Chautauqua. Sitting on our second floor porch, after putting Julia to bed, sipping sweet wine, listening to an orchestra play at the right-next-door amphitheater. This may not be everyone's idea of heaven, but it comes pretty close for me. I have been longing for live music, but would not have gone to this concert tonight because we are exhausted after driving all day and needing to set up our quarters. Julia needed to be in bed sometime close to a normal time, and I don't know whether I could have roused myself to walk even a few minutes to sit in a theater, but to relax on a porch after sorting out our stuff and tucking in the kid -- ah, perfection.

Friday: Spending a day with Jan at the Buddhist Shrine. Talking and listening as Julia drew and colored. I did not take a picture of her sprawled out on the floor in a corner of the very beautiful main shrine and I don't know if I could have captured what is so vivid in my mind's eye. Julia, butt up in the air, coloring in her bird book with crayons and markers forming a circle around her, amidst the whiteness and intense colors of the shrine. I cannot find a picture to post here and now really regret not taking my own. I would not have captured my vision but I could have had some record to remind me.

It was good to spend time talking to Jan. I find his rather new life at the monastery is somewhat of an echo for me. I am not at a monastery, I am not doing something completely new, but I am taking a detour from what I have known. I am dedicating a year to a retreat of some sort. My year of lying fallow. It felt like we were talking about doing some of the same things. And we both are hoping to use this year to shed some light on the years to come. Our talking invigorated my purpose and design, especially after the two funerals and the socializing afterwards. Too many times, I was asked what I was doing and what I intended to do. I don't mean that I was judged or criticized but my own resolve, my own purpose was shaken somewhat as I tried to explain myself over and over to my well-meaning family.

Julia and I did some strong sitting for Jan. I wanted him to critique and comment upon our practice, as someone who has had a meditation practice for a longer and more intense time. We did it in a room that is used as a teaching room. Jan offered one suggestions - to cross the right arm or leg over the left. He has been taught to do this as part of the tradition. Something about the life force having access to flow more easily. We shall try this.

29 July 2011

Pictures from a visit to the Central Park Zoo on Thursday.

Pictures from a visit to the Central Park Zoo on Thursday.

Incredibly, great sign on the departure side of the Williamburg Bridge. I love it!

A park in Williamsburg, Brooklyn, Wednesday evening after the second funeral.
In a sense this is such an ordinary picture, but whenever I see Julia climbing like a 10 year old, I remember when she first came home and could hardly climb stairs let alone a jungle gym.

A few very random thoughts:

I look at the calendar and try to adjust my perception that Sunday to Thursday was only four days. Time expanded to fill decades -- okay, at least a few weeks. I find that thoughts of Virginia and Maryland are in the "distant memory" file in the mind.

Beginning yesterday, or at least in my perception beginning yesterday, I am a single parent. A definite shift. I have been uncomfortable with this label for the past year. I have desperately wanted to share the responsibilities, the joys, the worries and the sorrows. I have not always been aware of my desperation but had I an offer to partner for parenting, I would have jumped at it. And then, yesterday, while Julia and I were showering, a calm spread over me. It was a laying down of defenses, a giving up and a taking up. I have been using the right words with Julia for months and maybe this is an example of fake it until it becomes real. Maybe it was the loss of my final parental figure although I had never leaned on my parents or even asked their advice. But somehow I have released David from the task of parenting Julia. I have become ready to do it on my own.

Julia is reading signs constantly! Cheshire did this at 3 and 4. Julia is doing it at 10. My breath is taken away by Julia's tenacity. I am so very please and so excited for her. There is a world of words out there, in here, just waiting for her.

28 July 2011

Two funerals in two days. It is hard to remember that the funerals were not the reason for being on the east coast. Hard to remember that this is a vacation and that this week was meant to be lazy with visits to museums and walks in New York and long talks with Cheshire. On one hand, I was returned to last summer -- the days of living in the present without effort, and communion with people who are not always a part of my day-to-day round. The reminder of family and community touch me deeply. I am grateful for their simplicity. And I intend to hold on to these rediscovered cousins and my remaining elders.

Cheshire, Julia, and I arrived at Cheshire's apartment at supper time last night, exhausted to the bone from our funeral days, stuffed from the "lunch" after uncle Walter's funeral (Is there some relationship between funerals and over eating?), and antsy to do something physical. We took a Brooklyn walk and settled into a movie, snacking on fruit and drinking gallons of water. Julia stayed up late and I got to bed just a bit after she did, sleeping long and hard.

This morning, the Central Park Zoo is on our plan and then a drive to Woodstock, New York, to visit Jan at Karma Triyana Dharmachakra, a Tibetan Buddhist monastery, where he lives and works. I have an impulse to write "Back to the vacation," but possibly what would be more appropriate would be to thank the universe for the privilege of being in this right place to honor the two men who died this week and to have another part of this journey to experience before returning home.

27 July 2011

26 July 2011 evening

As bazaar as it might sound, we have another funeral to go to tomorrow. David’s Uncle Walter Sarvet died last night. He has fought Parkinson’s disease for many years, and his death does not shock but the timing is unnerving. As if there is a tear in the fabric between the planes of existence and room for another soul to pass from one world to the next. Existence feels so very fluid and life very, very fragile.

We will travel out to Queens tomorrow after Cheshire collects some of grandpa’s record collection. We will listen to another Rabbi pray and sing. I will think of how it would have been if David was here, doing these things, going to these places. And I will feel as I feel. Here. Now.

Last night, we were asked if there were any words any of us would like to say at today’s service. I forgot all about this request until an hour before we needed to leave today. I know I frustrated Cheshire with my forgetfulness. I jotted a few notes, and said the following:

I want to share two small parts of Dad that I will carry with me always.

The relationship that he had with David. It was a relationship that deepened and grew through the years. David and his father shared books and movies, ideas and opinions, and pieces from the New York Times which arrived at regular intervals in our mail box. Dad did not always understand David’s choices, but I hope he took real joy from David’s achievements because David always wanted to make his father proud.

Dad loved his grandchildren. He doted on Cheshire, worrying about her choices, applauding her achievements, and always wanting to know what was next for her. He wanted always to be a part of her life. And I heard, sometimes through David, all about Wendy and Michael -- their lives, their partners and most recently their children. Dad took a lot of joy in this younger generation, I think more than he expected.

Dad was curious and kind, generous and gracious, intelligent and interesting, and I was so very fortunate to have him in my life for such a long time.

David would have been more eloquent, his text would have been richer, but I do what I can and honor both men as I am able.

At the service and at shiva at cousin Ilene’s house which followed, Julia behaved very well. She was quiet, she listened to what was going on, she did not fidget or act bored, she did as I asked. When she was able and had my permission, she colored, played with lego, and played with her leapster. This is not easy for her. I know that. She knows that I am pleased but I hope I can find something really special for her in the next days.

I know I’ve written this before, but I had wondered how to spend this week. How foolish this wondering. Life, the end of it and the celebration of it, rushes in without thought to my wonderings.

26 July 2011 morning

Tuesday. Cut off from the tedium of the day-to-day schedules, I am beginning to lose touch with day names. Is this close to the world that Julia lives in? But she is working towards recognizing day names and dates, not leaving them behind, if only for a short time.

Today is Dad’s funeral. Even on contemplation, I emotional brace, straighten my back, raise my shoulders when I need to let it flow through me. I want to let it happen as it needs to, offer comfort and goodness to those who will be bringing hurts and anger and resentment, and accept the comfort from those who have it to share. This is a tall order for me. Maybe better to call it a prayer.

I question the universe, but accept the blessing, of planning this time, the few days of this week, so loosely. I am not saying that I saw this death happening and planned my vacation trip accordingly, but I simply followed the impulse to connect the week with my sister in Virginia and the week at Chautauqua with some time with Lisa in Maryland and then days in and around NYC with few plans. I had thought of a few walks in the city that Julia and I could do, a few museums that we might visit, a show, but there were no tickets bought, no plans to see old friends, very, very little to change to accommodate this death. No jarring and abrupt change of course, just a folding in, the chance to accept, be present, and not add to the hill of regrets or resentments.

I have some anger and sadness that Dad did not see me in Florida. I could have used that gift of a last visit, but we have talked on the phone very often in the year between David’s death and his. At times, I believed that we were building our relationship, although I also believed that I was only a sharp-edged reminder to him of what he had lost. I believe that David’s death resurrected memories of David’s mother, Inez’s death and his mourning her. I may be wrong. Maybe not. I had hoped that in time we could have talked about some of that, talked about moving on from the death of a beloved partner, talked some about David’s life and his perspective on that life. When I did see him last fall, it was for a short time and with his wife, Claire. Anything about David was far too raw for me to examine closely and everything was fodder for Claire’s complaints and bad humor. And so, we talked of the inconsequential and mundane. I need to take a lesson from that and not carry the regrets of subjects not broached.

Cheshire drove from Maryland to New Jersey -- one of the shortest legs of my journeying, but a leg nonetheless. Lovely to sit in the passenger seat and offer conversation and advice. Julia puttered away the day -- leapster in the car, then coloring and clay all the rest of the day whenever we were not moving. We did a bit of math work in the afternoon, as we passed time at Uncle Harold’s house. I need to depend on her ability to amuse herself today as well. Her behavior has been quite splendid overall, not perfect by any means, but then she is a kid and herself.

Last night, after suppered at a Thai restaurant with Uncle Harold, we stopped in a fancy grocery store to pick up a few things for breakfast. At the check out line, Julia noticed a funny stuffed dinosaur on top of one of the registers. She wanted to touch it but accepted my refusal to bring it to her easily. She did like what it looked liked and was talking about it. The store was quite empty except for another customer who was checking out an amply filled basket in front of us in line and we had to wait. A manager came by, asked staff to open another register for us, and then engaged Julia in a bit of conversation. She directed him to the dinosaur and he took it down and gave it to her. I thought to hold and examine, but he meant her to have it. It was very sweet. She was so happy. And I think, so was he.

The new dinosaur, whose has been named although it is a made up name that I have not retained, was tucked in bed with Lizzy when we got home and seems to have rested comfortably. Julia told us in the car on the way home that the new dinosaur was feeling badly. In other circumstances, I might have pursued that a bit -- wondering if the feelings were related to adoption and a new family -- but I let it go. Not appropriate timing.

We are staying -- Julia, Cheshire, and I -- with Uncle Harold, David’s mother’s brother. I took him up on a long held invitation to stay with him when I was out east. I have known him and his wife, Lois who died a few months before David last year, for 35 years, and although we visited them when we could, we never stayed with them. And although I had planned to have dinner with him on Monday before Dad died, I had planned for only dinner. Once again, he offered his house to us and I accepted. So, after our drive we spent a very quiet time -- two meals, some lovely time on an enclosed porch which I had never noticed before (I am sure it is a relatively recent addition to the house, but I guess it could be 15 years old. Did we always visit in winter? Possibly.) watching and listening to the rain and talking, and watching Harold work his potter’s wheel. He demonstrated making a bowl, a cup, a vase, and a small closed piece, and we looked at his sculpture. Julia was enthusiastic at times, and then at times, lost in a sculpture book that Harold was using for reference. He has a kiln as well so is able to go through all of the steps of the process of producing pieces. What fun and how lovely. Made my hands itch to do the same. I did, at times, have to keep a firm hold on Julia. I knew her fingers were itching. It is a hobby of his, taken on after retirement, but the work satisfies him. He is very happy doing it and it is pleasing. The work gets more interesting each time I see it.

Note: The new dinosaur’s name is Lukey.

Before Julia went to bed last night, she said good night to Uncle Harold. She asked how his heart was feeling and if he would live. She does it in an quirky, disarming way. The questions seem to come out of nowhere but I know her concern.

24 July 2011

It is impossible to fathom the ways of the universe. I am only human and so much is hidden from me. From us. This morning my father-in-law died. The past year had been awful for him. I don't think he ever found peace after David died. His wife has become more and more demanding. And last week, he moved into an assisted living facility which was a fine place but not his Jersey home of 55 years. I think it was a quiet death, quick, and if painful, not prolonged. A blessing.

Last night, we -- Cheshire, Julia, Lisa, Nick, Sarah, and Michael -- buried most of David's ashes in a wonderful bamboo grove on Lisa and Nick's property. More on this later, but the process was very good for me. Lots of peace.

And then this morning. He was 93. He has a good, long life.

No more words. My last parent. Separation and endings.

23 July 2011

Yesterday's water pictures.

The pictures are not the best but the tubing pictures were beyond the real scope of my camera. Still, blurry or not, the capture a bit of joy. Julia was found by a little girl, Angel, who decided to play with her and after much swimming and hunting for critters in the shallows, they enjoyed a tube ride.

22 July 2011

Vacations don't seem to be entirely easy for me. For us. Two bumps today which are not devastating but do give me pause.

I was supposed to visit my father-in-law on Sunday. He and his wife have moved to an assisted living facility in New Jersey. They needed to do it. His wife cannot climb stairs and it seems really cannot manage with a good deal of help. I imagine these things because I have not seen them in more than a year. Dad is depressed and feels like he has been put out of his house. He needed to get out of that house years ago. His wife has always been very hard to deal with. From what I hear, she is only more so.

So, although once again, I planned a visit weeks ago, and talked about it a number of times, he decided today that I should not visit. I know that this is not personal, but personal or not, he will not live forever and any visit at this point could be the last for either Dad or his wife.

I just need to let go of it. "It" being what? The connection with David? The connection with all those married years? When I remember how much I have lost in the past few years -- both my parents and David -- it should not be surprising that I am not ready to sever connections with David's father. But it may just be time. I may just not have the choice.

The other bump, which I don't want to say much about, is that any idea of moving to Maryland within the year us quashed. Maybe two or four. Maybe.

Switching subjects.

It was somewhere over 100 degrees today, so in the afternoon, we headed for a near-by creek for sitting in or near the water, playing in the sandy pools, tubing, and swimming in the deepest and coolest water we could find. Staying wet, and in or near the water kept us so cool. There was a point where I forgot how hot it really was. Another little girl found Julia and the two of them played for a long time in a shallow, sandy pool, looking for tadpoles, little fish, bugs, and rocks. It was a delight.

When we got back to the house, I put Julia right in the shower. She usually doesn't take showers, but I wanted her to wash off and didn't want to go through a bath. She just took off her bathing suit and I put her right into shower and soaped her up, washed her off, and let her get out. And ya' know, she didn't even seem to mind.

21 July 2011

We are in Maryland and it is sooooo hot. No central air and I admit to being way too spoiled. Plus, the heat leaves is doing a number on my sinuses. I could sleep and vege out all day, which would not be bad except it is not a good thing for Julia.

Of course, at present, Julia is reading through a pile of dr. suess books. I was going to do math worth with her but she found a stash of suess books at Lisa's and is on her third book. So, do I move on to math or let her keep reading? Oh, I am lazy enough to let her just keep reading.

More farm pictures

This says it all! Julia on a horse -- forgive me, Barbara, but I forget whether this is Dan or Lindsey -- sitting up straight, looking pretty fearless.
We joked that "farm livin' is the life for me," but I think that the incredible log house is pretty incredible sitting in the lovely hills and valleys.

20 July 2011

Julia loved this little . . . uh, truck, jeep, golf cart, run about. We rode through fields and to the barn and to visit Ruby, and to the woods.
Julia and Leeanne rode in the back of little truck. Julia complained, yelled, and loved it.
So, not so much but complaining about the walk in the woods.

A stick helps.

19 July 2011 (evening)

It was hot today, although I heard through Ed, my contractor, that there is plenty of heat in Wisconsin.

From Ed: The furniture is out of the house. The movers ripped the leather on my leather chair. I suspect we will figure that one out but they are insured, so a fix is in order. The floor is sanded and staining tomorrow. Depending how that goes, the floors will be finished Thursday or Friday. Painting will begin Tuesday of next week. It will be Ed’s task then to get the bookcases built and in before we return. Can’t wait to see it all!

Early this morning Julia and I worked. We did strong sitting, and I vowed to do it ever day possible for the journey. She has much more control over herself with the sitting as a basis. Then we did some math work. She arranged her tiles up to 60 today and counted by 1’s and 10’s by herself. She is getting better at 2’s and 5’s. We did morning parade and she seems to get “between.” I am ready to introduce before and after. I had a few workbooks to do a third activity and she picked the word book and did two pages of beginning sounds.

We picked blueberries this morning and early afternoon. It was pleasant, sweet, quiet, work. No overseer or owner to even check on our work. We took pails out of the box, filled them, put the money in the same box, put the berries in the plastic bags provided. We picked two quarts to take to Lisa’s. We ate along the way -- sweet and tart, just lovely. Julia helped with the picking for a good deal of the time and then went to the end of the bush row to catch grass hoppers. She caught a green one and a white one. Was the white one a grasshopper? I am not sure.

Julia has eaten a good lunch for the last 3 days. Farm living? Also, tonight at supper at a Chinese restaurant, she ate like she was off medication.

We visited Karen and Bob, old time family friends from Jersey days, who are very friendly with Barb and Steve, and who now live in Virginia. I brought Julia’s clay which she has not touched since we left home. She had a good time playing with it for a few hours. Leeanne was with us again today -- she is a dear girl, attentive to Julia and sweet to the grownups. Still, not a creative bone in her body. She had no interest in the clay although she watched Julia in amazement.

Karen has become obsessed with her family tree and has been willing to share what she knows with me. She also translated some of letters written to my grandmother from the 1920 to 1959. There are not that many but they have been a mystery to me as they are written in Ukrainian and French. Karen has the ability to read in both languages which is lovely for me. I have long wanted to work on a family tree and as I go through the remaining boxes of the past, I can put things aside to help me with this project. It will not be quick work.

Interesting thing about Leeanne spending the time with us. Barb asked her to come with us for company for Julia. But to watch the two of them, you would not think that Julia cared much that another child was along. And a sort of almost ambivalence went on during the entire two days, and yet when it came time to say good-bye tonight, Julia effusively told Leeanne how much she was going to miss her. After leaving Leeanne’s house, Julia again told us that she was going to miss Leeanne and that she didn’t want to say good-bye. And then I wonder what Julia sees, what she imagines or understands about her time with other kids. Clearly, she wants relationship and in some way she imagines relationship. God, I hope she learns how to do it.

This is our last night in Virginia. We leave for Maryland in the morning. Back to internet service which I have missed. Yes, I am tied to the communication. But we leave this sweet and quiet place, appreciating the pleasure of spending time with Barb and Steve and their Virginia friends. A good time in the country, away from all that we are comfortable with, but certainly in luxury. And now, time for a late night soak in a very deep bath. Did I say luxury?

19 July 2011 (morning)

Elaborating on how Julia flounders at times during our days on vacation.

At the little natural history museum, there was a very interesting volcano exhibit complete with some sound. The sound was not overwhelming or even loud, and Julia had her ear plugs in her ears. Still, she planted her feet, covered her ears, leaned hard against me so as not to have to move, and squealed. It was behavior from two years ago (but without the tantrum which would have accompanied the fear). She would not move through or past the exhibit without a lot of coaxing and would not look at or learn about the exhibit. We were stuck time. All I saw was her terror.

We had a little girl of 12 with us yesterday and will have her todays as well. She is the daughter of Steve and Barb’s friends. Leeann is a sweet girl, very country, very sheltered, a bit spoiled in the manner that her parents have been very careful with her, kept her young, and she is not adventurous. She is very kind to Julia, and Julia accepts her company and companionship. Julia adds little to the relationship. She must be told to offer Leeanne a coloring book or to consult with Leeanne about a tv show. The relationship is one sided. I am rather awkward at these times. I am grateful that another child will deal with Juila. My impulse is to thank the child profusely. I want to do something to make the circumstance more entertaining for the other child. Juila appears to be pretty oblivious to the kindness and the friendship offered.

I am so used to urging Julia from activity to activity at home that I forget how reticent she is about moving out of her complete comfort zone. Left to her own devices, Julia would watch tv, play with her leapster or video games, play with clay or draw all day. I (and her line therapists) are constantly pushing her into different activities, and she pushes back a little bit and then transitions to the next activity. This is the reason for schedules, the reason we talk about transitioning all the time. This basic behavior, this desire for sameness and non-involvement, is exhausting. I can feel that I am driving this child on, controlling every move she makes, and her lack of initiative is frustrating. My eternal hope is that she will find the activities outside of herself stimulating and fun and will eventually want to do them herself, without my prompting. And sometimes, it appears that she is moving backwards -- I’ve had to help her get dressed all summer if I want her ready for our morning therapy. I renew my resolve to direct her each day, but wonder if I will have to do this her whole life.

On one hand, I am searching for the path to walk for the next years, my new life, and I proclaim that I am not looking for some ego gratifying task, not the glory road. I say I will be satisfied with the mundane if that is my lot. If I can find some joy and meaning and a means to deepen my spirit. On the other hand, I worry that Julia will always need me to push her through her days towards some learning, some experience, and to bed at night.

18 July 2011

Julia has been on a horse every day we’ve been here. With a saddle and also bareback. The bareback seems especially good -- lots of balance work. Julia was scared yesterday but today was easier. Barb has the lead at the horse’s head and I hold on to Julia from the side. Both of Barbara’s horses are big and their walk is quicker than Julia is used to, but she is enjoying it.

Julia does complain a lot. A lot! About everything we do. It is all strange and new and out of her scheduled activities. And so, the walk in the woods was accompanied with lots of Julia noise. Still, she did it, she got through it, it will be better the next time.

It was hot today, each thing we did took lots of energy. We went to a local museum of natural history. Small and compact but with a few dinosaur skeletons, some good animal exhibits, and some explanation of soil and rocks. A number of good exhibits that could be touched, more than most bigger museums. Julia touched. Julia had trouble with the volcano exhibit -- too real, it was film, too noisy, too intense.

Julia away from her scheduled activities flounders. She seems more autistic, she is more willful, harder to control. She is small and control is easily managed even if I have to pick her up and carry her somewhere. I try not to get in the position of physically moving her because she will not be as easily moved when she is 15. We must work on discipline, listening, following directions now, so the behavior will be imbedded by the time she is 15.

We’ve done math work once; drawn in her travel journal twice; did morning parade once. It is hard getting any working time in at all -- it always seems so awkward. I hope it gets easier as the traveling goes on. I theorize that the strange new activities will not seem as foreign if we have some standard work to ground her.

I am explaining myself to those who ask, defining the new time, asking opinions, gathering ideas and information. This does feel like a quest.

A girl on the farm.
Julia's new friend, Leeanne, with Aunt Barbara on the steps of the Triple Creek Farm log home.

17 July 2011

Very present. Is that what travel does to me? When I cast my sensors inside looking for might have, should have, could haves, ought to’s, I cannot find them. Just now. Just sitting on the porch of Barb and Steve’s house in the middle of no where in Virginia. Aware that the dog follows me and keeps an eye on what I am doing. Aware that I look at the surrounding trees and wonder at their growth as if they were part of a garden only to remember that no one cultivates their varied sizes and shapes. Aware of the stillness and quiet, so much that an approaching car or truck, and probably a pick up, can be heard for almost a mile away -- and the mile away is almost on the property.

Barbara wonders if I can feel comfortable here. I wonder if I look completely uncomfortable. I like the quiet. I admit to being antsy about not understanding the rhythm of the days, looking for cues of the life. But I am more comfortable than not. I like the stillness. I can imagine a great garden here. I can imagine working on it.

The dog gets up from the porch and takes a run in the front-of-the-house field. He is a city dog, grown and raised in Kearny, New Jersey. He too is adapting to this space and freedom, the sounds and the quiet. He is doing okay. I can’t compare him to a country dog. I don’t know any. I wonder how Latkah would do.

Yesterday, Barb and Sheila, my niece, took Julia on a short horse back ride. Julia sat in front of Sheila on a big western saddle and Julia listened and followed directions. Julia helped brush the horses and was very patient as they were readied. Before the ride and when they were gone, I sat with Ruby, who lives on the property, whose husband once owned the land, and who has an informal life-estate to the small piece of land that their trailer sits on. Mr. Gibson, who has since died, and Ruby have watched over the land and the house and barn since Barb and Steve have owned and built here. Barb and Steve coming down every month or two to see the progress on the log house that they built and then to enjoy, get away from New Jersey, have benefited from having someone on the land, and Ruby has been able to keep her home.

Ruby handed Julia a bucket and a bunch of black eyed peas to shell, and after asking a few times and showing, Julia happily helped shell the peas, as if she had been asked and done it her whole life. Here is something that I never think of doing. Here is something that Julia can do well and without effort. I marvel at the opportunity for experiences that I cannot give her. Cannot only because it is not something that I imagine.

Last year, when I wildly proposed a half way house in China for girls who were on the road to adoption, and the notion that I might travel with some of those girls back to the States to lecture, Barbara proposed putting us up here in the wilds of Virginia for short periods of time. Right now, I can almost see, very clearly, in fact, a bevy of Chinese girls shelling peas, playing with kittens, digging in a big garden and being put to sleep in the upstairs rooms.

16 July 2011

15 July 2010

Are we there yet?

Julia put the familiar kid question together yesterday as we headed for Traci’s house in Ohio. Are we there yet? It was a new question for her and it was an exciting one for me. Are we there yet? There is a future, there is more than the present, the now. Yes, it is an immediate future but future none the less. Are we there yet? The question sounded so like a neuro-typical kid.

We stayed in Ohio last night at the Smiths’ house. They are one of our China families who have become such family to us. I still marvel that we went to China with strangers and came back with much more family than a new daughter. We are spread out rather far and wide, and usually only get together once a year. This year the reunion is the weekend after Julia and I return from vacation and so we are not making the reunion because I don’t think I can make another long drive and miss more therapy. I question the decision because I enjoy our families so much, but after the last two days of driving, well, it makes some sense.

Julia played with Jaden who is 5 and ever so smart. Julia manages to keep up with a 5 year old, but unless Julia’s maturity excellerates in a year or two Jaden will leave her in the dust. Jaden taught Julia a video game that we don’t have and they played legos that brother Kevin collected. Julia wanted to stay and keep on playing, which was very sweet. I can pray that she develops and matures, she wants friends so much.
Julia loved the pool after a long day's ride.
Julia and Jaden -- China sisters forever! Jaden came home to the Smith family the same time that Julia came to us. We all travelled together and it is amazing that it is almost 5 years since we met these girls!
Video games. Yes, she is interested. Should I be really happy or not?
Almost all the Smith kids plus Julia.

I was good for me to talk to Traci and Scott -- trading some ideas. They let me go on and on about a few things, and I woke up this morning with some more refined ideas. How thankful I am for these friends.

We drove all day today. Long, hard driving on highways that eventually turned into city and town streets, all taking way too long. The first hundred and fifty miles were torture and knowing that it was only a third of the days journey added to my dismay, but just before 7 this evening we turned into the long gravel drive that mark Barbara’s and Steve’s log anything-but-a-cabin. Their house sits on top of a hill with magnificent views in all directions, horses to watch from lovely windows and comfortable nooks to curl up with books or coloring. The cell phone reception is awful and their is very little internet. I have not been cut off from my communication addictions in years, not even in developing nations, but the idea of a real break from my everyday is charming. Maybe necessary.

Two days away from the regular every day and there are stirrings.

13 July 2011

I know how far Julia has come, but sometimes I gulp and realize how far from typical this child is. And she has no understanding or knowledge that she is different from her age peers. At 10, I cannot ask her to go upstairs and retrieve something and expect that she will come down with it. Many times I cannot even expect that she will come downstairs without much prompting, pleading, scolding, or going up to get her myself. All of that makes the idea of asking her for help moot. I cannot ask her to take any responsibility for any of her possessions. Sooner or later, I can expect that she will open what she was told to leave alone not matter how tightly it is secured and close what I asked her to leave open. She does not seem to know the meaning of many words or understand much of what I ask of her. This may be a deficit in auditory processing. Tell her to go out the back door and she is following the arm raised pointing in the direction, not the words.

I know she will mature some. I know she will change and grow, but I wonder how tightly I will have to control and monitor her adult world. She is 10 and will change, but she was 5.5 once and there has been no miracle, just hard work and hard won, slow and often tedious advancement. Yes, she is reading but the effort put out by parents, teachers, and therapists has been tremendous. We all work on numbers now, methodically, slowly, carefully and with much patience. But she cannot tell you what comes before 7 or whether 3 or 4 is greater. Concepts like last, all, some, before, after, adding and subtracting are mysteries.

Her friends are her therapists and other grownups who are understanding and kind. She wants to play with children but she does not understand what to do. Her instincts are distinctly wrong.

I wonder about 15. I wonder about 20.

There are days when I am optimistic. Possibly foolishly so. And there are days when I wonder whether the opposite of optimism is realism.
Home stretch for packing. Julia can now go through a bunch of play choices that have been packed away. Just a bit more of office, clothes, toys and books, and then the tv (including the wii) and my tough one -- my internet connection. And then . . . vacation!

Last month, I didn't think I was really earning this one but boy, packing up the house has been a chore. Now, I think I've really earned the vacation. And earned the new house I will come back to.

I need to take pictures of the tv connections and the computer connections, so I can put them back together when we return.

The floor guy came in to do a sample to get my approval on color, as did the paint guy.

Vacation travel plans are, in brief: Madison to Tipp City, Ohio, to Chatham, Virginia, to Havre de Grace, Maryland, to Mt. Laurel, New Jersey, to Springfield, New Jersey, to Brooklyn, New York, to Woodstock, New York, to Chautauqua, New York, to Madison. A journey to see people. Have not checked out a single tourist attraction, but we can do that as the time arrises. We are not packing light. Julia scooter, lawn chairs, games and a puzzle, books and workbooks are traveling with us. We both have our library books and my books on tape. Plenty of music and plenty of Leapster cartridge games (Thank you, Lisa T. You made one little girl sooooo happy.)

I am still toying with the idea of finishing everything tonight and jumping in the car to drive for three or four hours, but I think that is just a fantasy. There is some stress to this day and hopefully by 6 or so, I will be so exhausted that a good night's sleep will be my most cherished desire.

Julia is with therapists almost all day today. Since lunch she has been showing some stress about leaving which, considering the packing up going on around her, is not bad at all.

11 July 2011

At speech therapy today, Julia took parts of a phonetic awareness test. She did better than I expected -- she does understand rhyming of simple words, she was pretty accurate at identifying which pairs of words rhymed although she cannot usually come up with the second word by herself. She also was able to identify first sounds and some last sounds with easy words.

Another interesting challenge was to say a compound word, like railroad, and then take one of the root words. Julia was a bit slow at this, but she was thoughtful and methodical, and got most of them correct. She could not do it with two or three syllable words.

At OT today, Annie had Julia climbing a ladder made of rope with wood rungs to attach little dinosaurs to Velcro strips on the ceiling. God, I love OTs! Julia was afraid but the task was too tantalizing. Watching her was wonderful. She is really developing core strength. Finally!!! And she did it despite the fact that it was scary to climb on a ladder that moved around. Annie was right there by Julia, but Julia was afraid. It is wonderful to see that she is also trusting Annie enough to be afraid, ask for help and do something challenging.

Two, possibly three days and we are off on our travels! House is almost completely packed -- the play room/office gets packed on Wednesday. I am hoping for a nice day tomorrow to garden -- lots of beds need some care before we leave. But like everything else, no sweat about this one. I could leave and come back in a few weeks and the weeds will only be larger.

Clothes are laid out -- too many as of now. Julia work assembling. I found the portable DVD that David had put away and I couldn't find last year. It was in a box that I would have never looked in if I had not be cleaning out the basement.

The proposed work is set -- refinish wood floors through out the house (that is every room except for the bathroom), paint downstairs, install built in bookshelves in living room and dining room. I say again, that packing up feels like leaving David behind in many ways, but the changes will be good for me. And in truth, David is not here to be left behind.

10 July 2011

I have not slept well in days and last night was the worst. Definitely over tired and the diet coke I drank during the day to keep me going, did not help at all. No caffeine at all today so dragging but hopefully, ready to snooze. Julia just got into bed and I am going to try to make this an early night.

Please, sleep, come!

Math update

For our morning parade (instructions plus learning about first, second, third, fourth, fifth, last, and in between), we are now using five stickers which enables me to do two "in between" instructions. I am so wanting to move ahead to before and after which had been my reason for starting this in the first place. But Julia is still hesitant with between and last, so we keep plugging along at those.

Using her number tiles, she can arrange numbers from 1-50 pretty well. The exercise also holds her attention. She is beginning to recognize counting by 1's and 10's. Counting by 2's and 5's is easier. We touch the tiles together and she can say the numbers alone; however, when she writes numbers she still writes some of the backwards. The backwards numbers are not consistent. I think she still does not have the shapes firmly in her head.

We are still working on easy addition with an abacus. She is getting better about remembering the procedure although I don't think she really understands what she is doing.

She can recognize all of our coins by name and she generally knows how much they are worth. We are working on counting money but we are far from understanding.

Julia is using numbers much more. I heard her say to someone that there were "a thousand" stars in the sky.

08 July 2011

Julia has an old dress of Cheshire's. Ches wore it to the anniversary party that we planned for my parents when they were married for 48 years. I don't save many of the girls' clothes but this dress was so delightful that I hung on to it. My niece, Sheila, had a matching one and the two of them looked precious on the day of the party. And now, Julia with her sketcher sneakers and blue sweater -- her own style of course -- can enjoy it.
I love this sassy look. 'Sassy' is a new word that Julia is using. She likes describing herself as sassy. And she is.

07 July 2011

Today, I walked around with what can only be described as a hang over. I woke up with a head ache, dragged myself through the day not wanting to do anything and feeling the full force of the stress of packing that I've imposed on myself. Oy! I thought it strange that I felt relatively okay yesterday but the effects of a few days of crying and feeling tearful all the time hit like bricks today. Strange to have that grace day. My thought right now is that my session with Ellen and then acupuncture on Tuesday afternoon eased me through Wednesday. Could that be?

I did get the car checked out and ready for the journey. I also finished up the packing up of two of the bedrooms and have all the books in boxes. There still feels like too much to do before the middle of next week. And I am acutely aware that I am doing the packing myself. Now, I did almost all of the packing for the move up to Madison and did the unpacking as well, so it is not the physical work that I complain of. But there was David to talk to, David to put Julia to bed or make us some supper or wash the dishes. There was David to tell me to stop working and that the work would all get done. I realize how much I depended on him to dissolve my self-imposed stress.

Julia and I had a good session with Marilyn today. I brought Julia's life book in anticipation of planning some way of getting at Julia's hurt and closed off mind. I had given her more time to be alone and play with her leapster after her therapist left this morning. I needed to pack, and she is always asking for more time to play alone. I bargained with her, asking her to spend more time working with Marilyn willingly in exchange for leapster time. Surprisingly, it worked. Julia was more willing and seemingly more aware of working. And of course, she didn't have to be. She had already had the leapster time.

She read through her life book and for the first time, she read many of the pages. Marilyn asked her questions about the pictures and Julia commented. She seemed to take in the idea of her birth (first) family. I have a picture of a Asian woman with a baby on the page that talks about what I know about her early life and what I surmise. She wanted to know more about that woman and wondered if the mother liked Julia. She also admitted to feeling sad, as well as scared, when we took her away. Marilyn and I talked about doing some sort of workbook type project with Julia -- the volcano book worked so wall. Something where she can reflect on information, draw and then reflect again. We will have more discussion when we get back from traveling before we really begin, but I am excited. It remains my belief that Julia must be willing to open up that part of herself that she closed up so tightly when she was little, and until she does, there will be learning and understanding and maturity that is impossible for her. A mother's theory to be sure, and an optimist's idea.

06 July 2011

Yesterday, I wrote about what I remembered about last year and David's death. I was sitting by our Bay at the times indicated. There is one more part of that morning that I want to remember. Later.


11:29 -- It was just about now, a year ago, that the heroic effort to re-start David’s heart began. Whenever I think of this moment, I am flooded with images and feelings, and also an after-fact that I learned from my sister. That once they bring in the paddles and injections, and army of personnel, the battle is almost assuredly over. Very few people whose hearts stop and do not almost immediately re-start are revived. I did not know that. When I think of it, it makes me both sad for the wasted energy and effort and cost of all the expensive means being used, and also grateful to those who rally and try. Try incredibly hard. How many times a day, a week, during a career, but very little success. And still they work at it.

I’m sitting on a bench by our little bay, two short blocks from my house. How fortunate to live near water. How spectacularly wonderful right now. I can sit on a city bench -- that old kind with concrete side and old planks of wood making the seat. David and I and Julia and a few times friends sat here. Evening walks. With the dog. We inhabited this space. And it is nice to be where we inhabited together. It feels right to be outdoors.

11:43 -- they had been working on David’s body for more than 10 minutes now. At first, I stayed in the room. Then the room filled with more and more people and machines. More vials of drugs pushed into syringes sat on the bed stand. I stepped out -- did someone ask me to? At first, a nurse or nurses, assured me. “Don’t worry” or some such thing. I didn’t. Scared. Very much so, but not ultimately worried. We had gotten through so much up to that point. This was another bump, another challenge to rise to and recover from.

11:46 -- They finished by this time. They asked me to come into the room and to tell them to stop the artificial means of keeping David’s body alive. For a moment I wondered whether I should tell them to keep going until Cheshire got there. She was on her way. But why? He was not alive. There were no words to say, even looks to exchange. Just a body, his to be sure, but a body that was being kept alive by others massaging his heart and pumping air into his lungs. And so, I said stop. And then, I let go. Then, I cried. I wailed. I did not know I was capable of such emotion in front of strangers, but these were the people who had tired so hard to make him live again. Were any of them strangers? I heard someone “call” the death for 11:45. My reference was tv doctor shows but there was no question what was said and what it meant. I don’t know if that is what the death certificate says.

I have never been one to cry much. I seem to have saved up years of tears for this death, for the remembrance. Sometimes I wonder if I will ever stop.

Cheshire came. It was very soon after the “call.” I think the room was rather empty by that time. She saw me from the door and she knew. I don’t know if anyone stopped her before she came to the room. We stood and either side of the bed and cried. We held hands some. I must have explained something. We cried.

Someone asked -- a nurse set to watch over us -- who she could call. My first impulse was no one. No one needed to knew this sadness, this complete loss. But she insisted and I handed her my phone and asked her to call Lisa. How awful it must be to make such calls. How hard is it to be a stranger who is calling probably the closest person to the grieving about the death. I have no idea what was said. She may have stepped out of the room. And then, she was telling me that Lisa would come. But who else, she wanted to know. And I asked for Mary. Mary, just a town away, not hundred of miles. And Mary was there before we left David’s hospital room, hugging us and soothing. I do not even know what I interrupted. I don’t know what she put down to be with us. And she stayed the day, the evening, and was back the next day. Lisa was with us by nightfall. And Linde, Cheshire’s dear friend, by the next.

After a long time, and no where near long enough -- I probably stopped crying for the moment, stopped touching David’s body, the nurse (and I guess she could have been a social worker. The nurse who stood by me in the hall after a time when, I am sure the end was guessed, might have been replaced by a social worker. I have no idea who that person was, what she looked like. And I feel badly that there is no way to look back and say thank you.) asked us to move into another room, a quiet office type room where bad news is delivered and families grieve. Just down the hall. And we would be allowed to see the body again. They would clean up the room. David’s room. Put the room and the body in order. Assurance. I did not want to leave. They let me stay. Who is the they I write? Maybe the nurse, maybe Mary, maybe Cheshire? I remember more than one voice urging me to leave, but assuring me that I could stay as long as I needed. The lessons of death, the needs of the grieving, the shocked, those who wander in a limbo land are probably well known by all on that floor. That acute care heart floor. David’s room was a step down from the heart ICU, but steps away.

When they were working on his stopped heart. At first, a nurse assured me that as soon as they got it started again, they would be transferring him back into the ICU. “We need to stabilize him first.” Or something like that. Much later, that day or another day, when I spoke with one of the doctors, he or she said made reference how they had managed to start the heart a few times before. And the knowledge, the full awareness, that David had never been out of the woods, and that for all of the progress he had made, his condition was much more fragile that he/I/we had understood, flooded in. His heart had stopped two nights after the transplant, when he tried to get out of bed and fell. I knew that. I cannot remember the words now, but that phone call in the middle of the night, included technical words that meant, he died but we managed to bring him back. I had conveniently, in the intervening time, filed that information very deep inside.

And the night of the rush to the ER the week before his death, they had “lost” him for a few moments during or after the move to the ICU. Again, words of science were used and I allowed myself to let the information go deep.

So, when the nurse told me of the transfer back to the ICU as soon as they could get David’s heart started, I was more comforted than I should have been. This was going to be like the other times. I thought that David was going to be very disappointed at the regression back to the ICU, but we would become more patient, work at our patience to recover.

I paced outside his room. Craning my neck to see what was going on. I remember the paddles, the shocks, and no heart beat but no easing of the effort. Was it five minutes in or 10 that someone asked if I should call someone? It was forever and it was not soon enough. I called Cheshire. What did I say? To come right away. That something was happening. To ask Maria to come over. To call Cathy. And then, I worried about her. Doing what she had to do to leave Julia and driving to the hospital knowing that her father was dying or dead. Did she know that?

It could have been hours, standing there outside the room. The room that was busy with people shouting orders, trying what they could, pumping, clearing, shocking, looking at monitors. Hoping. Hoping. Hoping. The nurse put her arm around me. I was still so strong and sure that it was going to work. That I would see his eyes flutter open and a wan smile cross his lips. And I heard a woman say, “Is there anything else anyone can think of to do?” And murmuring. My mind raced; I did not breathe; I was numb; I was sure there was one more idea; I knew. I knew. I knew.

And then they called me in. And I stood at the foot of the bed. For an instant, I thought to move to the head, with them, the professionals. But I knew, when I stood for the merest of moments that it was too late to stand anywhere close. I was where I needed to be.

Stop. Yes, they could stop.

In the room that the nurse ushered us into -- Cheshire, Mary, and I -- I knew that I needed to make phone calls. There was a moment when I did not want to tell anyone. Again, I was aware that this awful thing that had happened might be contained between the three of us in this little room. No one else need know, need be sad. No one else need be concerned. For moments I wanted to spare the world. Our world. I wanted everyone else in the world to believe that David was still alive. And by some magic he would be for them for a little more time. At the same time, I was aware that there was a hospital full of people who knew -- at least those who cared for David -- there was my neighbor who knew that something critical was happening and my friend Cathy, who would replace Marie to take care of Julia. Lisa knew. Mary knew. I could not contain the news, the knowledge. My image was that of trying in vain to collect spilled milk.

At some point, the phone rang, and Mary took it from me and answered. I think it was Lisa to tell me she would be there that evening. Is that true? How did she arrange it so quickly? I called David’s father first. It was as soon as I could, as soon as I was in enough control to manage talking. It was the most horrible call that I have ever made in my life. The most awful of conversations. What are the words to tell a 92 year old man that his son was dead? Dad almost immediately started blaming the doctors, the choice of the heart transplant, our trust in our doctors. Looking at it now, I see a reaction to David’s mother’s death 30 years before. I believe that she suffered the same pretty rare heart condition from which David did, and although there was absolutely no way for her doctors to find or correct the condition, those doctors had made mistakes. Their mistakes may have been justified, may have been likely diagnoses, but they were wrong. I don’t remember his anger about that. I did not see it. I do not assume that it was completely unexpressed, but I do not know and probably will never ask. Maybe some of our situation was the same, maybe mistakes were made, but the mistakes, if there were some, were studied guesses and best efforts. I cannot fault those who made them.

But David’s father was angry, almost angry at me, certainly almost scolding, and wanting very much to blame. This was hard for me. Harder than I knew at the time.

I called my sister. I called home to tell Cathy who was with Julia. I called Marilyn, our attachment therapist, who was on vacation on the west coast. It was rather awful to call, but I needed her help and I could not stop myself. What should I say to Julia? What should I not say? I caught her off guard -- as if she was supposed to know -- and I could hear in her voice that she had been on vacation far from the worries of the children she heals. But she talked. She gave me herself and was willing to let me take her time as I needed it. I was the one who cut the call short when I realized that I knew what I needed to do and how to do it. I realized that my instincts were fine. I remember asking for or wanting from Marilyn magic words. I remember the absurdity of the idea.

And after a time, someone came in the room and explained that they had cleaned up David’s room and that we could go back in if we wanted and stay as long as we wanted before the body would be brought “downstairs.” Did that say that? Or do I just remember it as that? Mary and I went in and Cheshire stayed behind. She was finished with the body. I cried some more. I touched his hand, his face. I kissed his cold face. He was so much there. So much himself. And so dead. So far away. So not there at all.

Our stuff -- what he had at the hospital, my bag, and computer were in a neat pile to be picked up before we left. Which we did. Mary did it. It was when I saw the back of his neck begin to turn blue from a pooling of blood that I could move on. Move on. I hardly did. I moved as I was directed, only with some of my own efforts.