30 April 2011

On Thursday, I picked Julia up from school and she told me she had a bad day. After some prodding (but less need for prodding all the time) she told me (and later Marilyn) that she had yelled at school, that her teacher had asked her to be quiet, that she had been angry and needed to calm down. I could not get the why of it out of her. Getting to the why is still quite difficult. It takes an amount of reflection, an understanding of cause and effect, a working and workable history, that Julia still does not have as ready tools. This lack of why is a normal part of our days and sometimes, it is ever so frustrating for me. Sometimes for her as well, as I attempt to ask questions in a dozen different ways, imagining that the right words will unlock the mystery of why.

But it doesn't.

So, I write to the special ed teacher, who is a substitute until the end of the year because Julia's regular special ed teacher just had a baby. I have had my ears perked for some sign of substitute rejection or reaction, wondering if the "yelling" was really a inability to deal with teacher transition. And really, whenever Julia had told me about her yelling in school, there has been a huge story of some tantrum, or long ago, some hitting another kid.

So, I write to the teacher.

And I get back a note that she was in the classroom in the morning and Julia was fine. She had not been told of anything happening, but she would check with the others on Julia's school team. We don't know this sub very well, but it has been my experience that there is great communication between and among teachers at Julia's school, and Julia's behavior is almost never below the radar. She checked on Friday, asking others and coming up with nothing at all! There was some confusion in the lunch room on Thursday, but Julia seemed to rise above it. When her teacher's questioned Julia about Thursday, all Julia would say was that she was hungry for the afternoon (which was good to know since she had not eaten her lunch that day. Nice to know that not eating means hunger). Maybe her main teacher told her to be quiet during the day, but it was not at all noteworthy or unusual in the class.

And so, it turns out that Julia was upset a bit in school on Thursday and she came home and told me. And that was it! What about that for normal reaction of a 10 year old?!!

Very exciting.
Early in the morning -- oh, I was hoping to sleep late. I was exhausted last night and went to sleep with Julia, but it was only a day's worth of exhaustion, not more, and 7 hours later I am up.

And so, on to the day.

I did my presentation yesterday at the LEND seminar, talking about complex trauma and Julia. It was so very short -- just under 10 minutes which was our max -- and it left out much of what I wanted to talk about. And so much of what I've learned. I did an adequate job presenting, thinking that with more time and much more experience, I might evolve into a compelling speaker.

I have a folder full of forms to fill out and another class to attend, but otherwise I am done with my year at LEND and the Waiseman Center. There are questions: will I do a second LEND year? Does UW and the Waiseman Center have more for me to do? Is this family discipline within a somewhat medical/research world something I will pursue?

I intend to lie fallow for a time and see what rises to the top.

Likewise, with PTO. Another week and half before the meeting at which I hand over the reigns of "power". I am not immediately volunteering for more to do there. I would not refuse a board position if asked, but I will not pursue it, at least not right now. Maybe in a year. I need to see what living without it is like.

Again, lying fallow.

I understand that I have busied myself for this past school year. It has helped with grief, it has helped with a sense of purpose, it has helped getting me up every day. Now, to purposely let go of so many self-imposed responsibilities and see where I lean towards. I give myself a year of this, but even as I drove home from class yesterday, I was making plans to check out classes and connections. I plan to move slowly right now, but will also give myself the freedom to explore. I will really try not to jump into any big project for at last three months.

Ah, a year has already become three months!

I came to a decision about the house two days ago. Have just about breathed it to Cheshire and then Lisa. Feeling less than sure today, but ready to live it out loud. I will not do the big renovation on this house. I do have a list to make this house more livable and beautiful which hopefully I will get through this summer and into the early fall. It still includes sorting the piles of stuff and making my load a whole lot lighter. It also includes getting a new kitchen, although definitely one which will serve my needs but not be the dream kitchen or impose too much economic pressure on this house. Julia and I will probably move to Maryland, with or close to Lisa's family, in two years. I say probably because this is my proposal without all the approvals necessary -- there is a lot to decide and work out. And I say two years, accounting for my fallow year and another LEND year, accounting for another 2+ years of intensive therapy for Julia, as well as attachment work. Julia will also have to change schools for middle school at that time. This morning I am thinking that 2 years is a very long time, and I am open to the ebb and flow of change. Maybe I would better say it to hope and pray that in two years we will be somewhat settled in our future plans. I still dream of living in China; I still dream of another child; I am beginning to hope for (but not expect) another beloved partner. All of that will have to be fit into the bigger picture, and all is so dependent upon the rest.

It is a step.

To those who might say -- I always knew . . . , or Of course, . . . . , I'd say I have known nothing and assumed less. It has been an incredible struggle to get this far from last July, and I know that my journey back from grief and loss is far from over. These decisions, or ideas for decisions are hard won, after much thought and silence. They are hardly set in wet clay and maybe the most sure statement I can make is that they will change, and grow, and morph into what will be. The humor of the fact that I am coming to these decisions now, and in direct relation to whether or not to dive into the major house renovation that would give me a splendid abode is not lost on me. The thought that in this "place just right" that Madison is to me and with a house perfectly fit to my needs and desires, I would be living without a heart hold in life, was the beginning of a cascade of decisions. But I am probably standing at the threshold of this cascade, modification and alteration will probably be the norm.

I will not try and catch the stream but let it flow around my legs and through my fingers. I will stand in the river bed and move with the water. I will not be afraid.

28 April 2011

Oil Spill Remediation 201

Yes, the first part of the oil spill remediation on the house that my parent's lived in is finished. (There is still city, county and state approval to get, as well as new stairs, walk, driveway, and landscaping to do.) However, last week, the project manager let me know that they have found more oil. When he first said the words, I felt another punch in the gut, but at this point I am resigned to the never ending challenge of my mother's estate.

My mother's estate. Surely, this is NOT the legacy she would have chosen for herself. She might have wanted to nag me into becoming more mainstreamed, doing more age appropriate, socially acceptable, culturally oriented activities. She did want to change my in all sorts of ways but to become the overseer of an oil spill remediation, to torture her beloved house, destroy her front steps, her lawn, and driveway, would not have been part of her plan. Had she cursed me with her dying breath, it could not have been more effective, but had it been a curse, she would have been appalled by the means to my suffering.


So, enough with the self-pity.

The remediators think, not sure yet, that there is oil soaked soil another foot beyond the original dig. They could not dig that part of the soil out when the hole was opened because the house was not braced appropriately to go further than they had planned. The original dig plan was modified during the work. The original plan was to dig down 15 feet, but once they did that, more oil soaked limestone was found. And so, they dug another 5 feet down. (I was a bit disappointed that the pictures which my project manager so generously sent to me did not really capture the 20 foot hole in front of my parent's house.)

The new plan is to take new borings inside and outside the house and then do another dig. My plans to have the house on the market this summer are flying out the window. I am resolved not to make any more of those plans; however, I have contacted the insurer to see if I can renew insurance for yet another year, and I am applauding my own foresight in keeping money in the estate account far beyond what I originally thought I would need.

The additional fly in the bitter ointment (what 'bout those mixed metaphors and crazy cliches) is the neighbors from hell. Yes, those uncooperative, litigious, totally unneighborly neighbors, who have kept the work from happening for more than a year, are opposing any further work. They have a new lawyer. They inspire many curse words. And mainly because there is nothing that they can really do -- not ultimately -- except cost us more money.

OR, there is plenty that they can do. They have stretched out the work for more than a year longer than it would have taken, they can delay the additional work for at least another six months if they work hard. They can threatened to sue someone and make it hell for my insurance company and the remediator. They can be rude to my project manager who is a hell of a nice guy. They can make my property and their own look its worst for a longer amount of time.
Actually, living where they are might be their best punishment.

I could be angry with them, but why? Those feeling are over and far behind me. We maybe working at this for another year -- no kidding, a year -- but in the end it will all get done. We are digging because of state regulations not whim. There is nothing, in the long run, that they can do to stop it.

I must say that I still hope that I sell the house to the worst neighbors on the face of the earth. I know, that is not generosity of spirit, but . . . they have made this so much more difficult than it could have been. And it will cost us money -- the estate is still paying Jersey property taxes, utilities, and keeping the estate open and filing taxes and paying a lawyer. All this is just too bad, but it is what it is.

27 April 2011

Some last Disney pictures

Ready to leave with her pirate hat and Lizzy's box. My little traveler.
Julia loved the Dumbo ride, and went on three other rides that were basically the same thing. And she and hundreds of other kids loved them all!
Julia loved Cinderella's castle even though there was not much in it for her to see.

Waiting and busing and waiting some more. Julia worked on her Leapster. What thrilled me was that she was doing the first grade program sometimes not just "Pet Pals."
More drums. It seems that there is a drum station in every park, and Julia tried them all.
A friendly dinosaur to pose with.
This was the automatic picture that was taken on the dinosaur ride. Julia was the one who was really frightened, but somehow I look a whole lot more scared than she does.

"Riding" to dino-land with some friends.
Julia did not have therapy after school today -- a change in our schedule. We have not had a school day without therapy in months. It was lovely.

Julia and I made a schedule, Julia writing it herself with some help in spelling. They have worked on very endings in school and she really has the -ed and -ing down so well. We had working on a puzzle, reading, coloring, playing UNO, and playing with the wii. We did it all! And Julia had a great time doing it -- great spirit and enthusiasm.

We are finally playing UNO with all the cards! I have to check out all the rules. We have taken the cards on trips for airplane games, and the therapists have been doing modified games as well. It is a long time in coming, but wow, do I feel the glow of success on this one.

It is numbers, turns, winning, shuffling cards, and so much more.
I have a big wild forsythia bush out my kitchen window. Forsythia puts me in mind of wild and wonderful springs. My early childhood home had a slope on one side and my father and grandfather planted forsythia and pussy willow to hold the soil. I did not know the difference between the two when I was little and imagined that the early spring yellow flowers gave way to the fuzzy pusses and then to green leaves. It was a miracle of nature to me as that very young child.

And when we put in the gardens on Washington Blvd. in Indianapolis, I planted both, finding that both were aggressive growers that needed much controlling in a garden bed however large. That slope from my early home that had little else planted on it was perfect for those wild, aggressive, spring plants.

I usually enjoy cutting some forsythia to bring inside, but I cannot seem to do it this year. It is my sad heart that stops me. It makes me too sad, just too many tears. Why? David never cared about plants, flowers or anything I brought in the house like that. Is it too much my normal year? Does it feel too much like all that has gone on before? So, I wash my dishes, scrub a few pots and look on the wild forsythia that blooms outside this year.

I exchanged text messages with Lisa today, and then talked to a kitchen designer who put the design that I did on his computer program. I have been dragging my feet about the renovation because I am so unsure about what kind of investment I should be making in this house. The big renovation would be such a pleasure, but I know that I can never (or at least in the foreseeable economic future) make the cost of it back. If I can see myself staying in this house, which translates to staying in Madison, for at least 5 years, I could be at peace. But right now, I am just not sure. I texted to Lisa that Madison is that place just right, but without a heart hold here my roots are very shallow. As I came out of my meeting with the designer, all I could think about was the importance of heart. I could live anywhere with David because we were each other's very deep roots. I need heat and I don't know if I can find it in Madison, even in this most wonderful place.

I also hold onto the idea that I do not want to always live alone. I want to live in community of some sort. I was not build to live alone, not happily. To do that in Madison, I would have to move from this house. Again, the renovation doesn't make sense.

I know I've written this before. I just need to sit longer with the questions. Patience and time.

26 April 2011

It has been a while and I've been taking time to finish up some PTO work and to shave seconds off my final presentation for LEND. First year trainees are given 10 minutes to present a year of individual work. This seems impossible to me. Of course, how should they know that I cut my teeth on that sort of individual work at SLC (Sarah Lawrence College) and I don't think anyone gave us a time or page limit. But as I've shaved and parsed and decided how to put information on a powerpoint and talk about something else (and I have no idea whether this really works but I like when I've seen it done), I do realize that I've learned something this year. Not a lot, not everything that I want to. As I rehearse the presentation, timing myself all the time, I am becoming quite fond, quite proud of what I've done. Again, not perfect, not even startling, but not bad. A start.

Today, we managed to gather a special PTO board of directors meeting to ratify the new bylaws. Again, and again, not perfect, not a perfect job, but one that is now done. May 10, the last PTO meeting of the year. I hand over the guiding task -- president, if you will -- to a new soul. And she will be terrific. Really terrific.

And after the presentation (and some paper work) and handing over PTO power, I will be free. I am longing for it, but I am terrified at the same time.

I had time today, so I brought up a box to sort. Old receipts, bills, thousands of rejections from literary magazines, sweet letters from New Yorker editors (even though David never got a story there). Sometimes I think that I must either save everything or nothing, but that is only in rash moments. David should have thrown so much of this stuff away years ago! It is such a burden going through it, so much sadness for me. I can't do the same thing to Cheshire and Julia. I have been trying to come up with an organizing principle for the next round of sorting, and I had an idea today. I will put together a box, maybe two of David's writings (and hopefully one copy of each one), and then do a chrono file with an expanding file for every year. At least it is a place to start.

This saving of paper does feel rather mushy right now. I don't know the reason for it. Going through box after box, it is so clear that we have not been through these papers since they were put in their boxes. Yet I cannot part with it. Not all of it. Maybe in 40 years or so, Cheshire will just chuck the whole lot in a dumpster.

It is all about moderation, but is moderation 5 boxes or 20? Does it matter that we have written all our lives? I feel the weight of one who inherits a lifetime's worth of writings, not like on of the participants. I want to lighten my load and sometimes it is only so as not to have a cluttered basement.

21 April 2011

There is a bit of snow on the roof, and a nip in the air, but daffodils are in bloom and the sun is out. What's more there is a giant orange street machine -- something with a claw on the end of a long arm -- parked in the street on the side of the house. Strangely enough, the orange of the machine matches the orange on the house. Is this accessorizing?
We made it home without a hitch. It is after nine in the morning and Julia is still sleeping. She needs it. Badly. Although we had time yesterday to sleep in and take our time all day, Julia did not relax for a minute. She even told me that when we got home she was going to stay up all night. Not defiantly, but with great enthusiasm.

None of that happened. We got home, got everything inside, she changed into pjs, brought Lizzy into our bed and was out in a matter of minutes. I was not far behind.

After the upheaval of Monday, Tuesday was very pleasant. The dull pain remained but Julia and I really did enjoy the Magic Kingdom. It was a repeat for her (she and Cheshire visited on Friday) and the park was incredibly crowded, but we took our time, and used our handicap pass to its full advantage. The pass is excellent for wheelchair users, but not really set up well for kids on the spectrum. There are still lines and crowds and noise. I don't know if there is any alternative -- I mean Disney has long lines, crowds and is full of noise. We could not have even tried this visit last year. Ear plugs and head phones made it bearable, but I wouldn't recommend it for many kids on the spectrum. Or many kids with ADHD that was not well controlled.

It was also a bit difficult being with so many families. All those couples got to me after awhile. And all those normal kids did too. But the magic did get to me. At the Animal Kingdom, the Loin King show made me miss performing, and the lazer light show and fireworks at the Magic Kingdom made me happy. I am who I have always been and I do believe in dreams coming true and magic happening. It was very nice to leave on that note.

Julia was generally very well behaved. Some moments:

She does talk to everyone! I don't think that I should stop it. I think she learns from at least some of it. She engaged a mother and daughter in conversation as we bussed back to our hotel on the last night. The little girl, who was 7, fully engaged with Julia. When I see kids do this (Amy's daughter is the same way), I want to bottle it! I want to understand what makes some kids willing to put up with Julia's differences which some adults find charming or fascinating, but which really is different from other kids. I want to take names, addresses, and phone numbers down, so we can have repeats of those experiences.

Julia loves Lizzy the T-rex. Lizzy was talked about, shown off, and played with all trip home. She cannot wait to show Lizzy to her therapists over the next few days. I have the feeling she may be going to school on Monday, but I will be the one suggesting it. I had been planning to take her to the build-a-dino store since I discovered it, but really had no idea of how much fun Julia would have.

Funniest moment on the plane yesterday was helping Julia read the in flight shopping guide. She learned the words "snoring termination" and "shoe inserts" and a few others that were laughably hard to explain. Although I brought a few work and reading books with us for the trip, I did not take them out once. I let Julia play and color and draw and play with her leapster during her free time time. She did chose to play the 1st grade games on her leapster along with petpals, and she chose to pick up various things and read them. She wanted to push all of the numbered buttons at appropriate times, and numbers were included in some of our conversations. These may read as such ordinary happenings, things that I would not have even commented on if I was writing about Cheshire at this age. For Julia, is in progress.

I look at other kids her age, and seeing a wide range of them over the past week, I plainly see the hill we are climbing. The hill is there. We are climbing it together.

On the long drive home -- an hour plus a bit more from Milwaukee -- last night, I wondered about home. I have been mulling over the grand renovation -- investing heavily in a house that I may/may not stay in. No answers here, just mulling. I really like Madison but my roots are appallingly shallow here. But then, I don't feel like I have roots anywhere. Just baggage. Lots of baggage. I cannot close into myself for too long because if I do, there small society around me could disappear. I appreciate the support of friends a great deal, but also feel the burden of being alone. I have grown so accustomed to partnership, that standing on my own seems more than unnatural. This morning I realize that I am still getting through each day the best I can. Last night, part of me was still waiting to come home to someone.

I hear little feet. They are coming downstairs!

19 April 2011

The making of Lizzy the T-Rex

We went to the T-Rex Cafe and I was planning to take Julia to the Build a Dinosaur store there. This picture with Cheshire and the dino was one of the few pictures that Julia wanted to take.
We found the flatten body of our new friend. Julia picked out the heart and also the sound box which says "I love you." Then, she helped the dino maker blow in the stuffing and Julia watched carefully as the dino maker laced up the dino real tight to keep all the stuffing inside.
Julia was pretty happy with the result.
Julia washed her new dinosaur under the dino "shower."
And found a lovely pink dress and matching shoes. We registered our dino, gave her a name, and they packed our new Lizzy the T-Rex up for take home.
There was one more dino to pet before we left the store.
Julia and Lizzy.
Lizzy came out with us that evening, as we walked around the boardwalk, stopped to roast some marshmallows, and have dinner in a cool cafe.
Lizzy also enjoyed the street performer. She was very enthusiastic about cheering the juggler on!

18 April 2011

I have been complaining, venting, and worrying this whole journey, and today the same continues. This trip has been full of stress -- strange, unexpected, and unusual stress. It is hard to believe that last summer's journey to London and the Isle of Wight was so easy, so smooth. Such an awful time for me and the universe just seemed to be taking care. The universe and my dear British friends who included us, took us in, and let us join in their celebration.

Where is the universe now?

To start at the ending, the pleasant part of the day -- Julia and I spent the day, the afternoon and evening, at the Animal Kingdom. I made the mistake of doing a ride called Dinosaur. It is semi-based on the Disney movie of the same name, and although I knew it was a bit scary, I thought that the dino theme would make it acceptable to Julia. It was a fantasy ride back in time. It was a rough, quick ride with lightening, steam, and dinosaurs jumping out. It scared the begeebers out of my girl! She screamed through most of it and grabbed me around the neck and held tight. There may be deep gouges in my neck where Julia held on tight.

The rest of that day we walked around, stopping at shows and rides, ending with the Lion King show -- the last of the day -- which was splendid.

But the way the day began. Ugh!

I called David's father early this morning to check in with him for our visit tomorrow. I had rented a car and paid for a room for tomorrow night. It is a 3 hour drive from here to Deerfield Beach where they live, but I thought the chance to see Dad and Claire, even if it was for a day was worth it all.

Last week, when I was on the phone with Dad, he made a comment about my coming to see him for such a short time. I felt terribly guilty for not planning to spend more time with them. This morning, he told me not to come to visit them. Claire is not feeling well, which I knew from last week. Even then I suggested that we come and stay for a short time, maybe bring some food in for a meal if we wanted to do that together. But he told me today that they have doctor's appointments tomorrow afternoon and on Wednesday morning and would prefer not to see us. Right after he told me that he switched the conversation and asked about Cheshire, as if the total change in our plans was no more than a passing inconvenience.

I was stunned and shocked for so many reasons and then could not shake it for hours. It took hours to rearrange the tomorrow. We are not going to drive down to Deerfield beach tomorrow just to stay at the hotel and turn around and come back to Orlando to catch a flight on Wednesday home. Instead, we will stay at Disney but change hotels tomorrow morning. It stung to eat the cost of the car and Boca hotel, and then turn around and pay for another day at disney at almost twice the cost of where we are at present, plus to extend our park tickets for another day. Julia was disappointed not to see grandma and grandpa, and for once, I was grateful not to have to explain why we were not going.

But what lasted for the bulk of the day, was, for better or worse, the feeling of abandonment. One more time. David's father and I are not incredibly close but I thought I had taken good care of him since David's transplant and death. I have been there for him, at least on the phone, when he was looking to blame someone, when he wanted to just prattle on about losing David. I tried to ease his guilt when he did not come to the memorial. I call to check on him often, I made the effort to visit him when I was out east.

I don't think that this is a personal rejection, not really. He is an old man and he has a very difficult wife who is older and not well. It was probably not convenient to see Julia and I right now. But why wait until today? Why not say something last week? Or when I originally called to tell him we were coming down? Did he imagine that we would change our minds? Did he think that we would not show up once I made the plans? Did he imagine that there were not plans to be made to visit them as part of our trip from Wisconsin?

And I cannot help but feel, however unjustly, that it is because it was Julia and I. If it was David or Cheshire, time would have been made. But it is just me, just the wife, just someone who is not really family.

And that is what stings. That is what has had me close to tears for most of today. Just one more punch in the gut. Gosh, he is what? 92? 93? Every visit could be our last. And he doesn't really care whether he sees me or Julia. Not now. Not any last time, if that is what it is.

So, I moped around and had a hard time for most of the day. And I am over most of it now. My resiliency is low, I can't take it. I don't bounce back as quickly as I used to and I get hurt and take a slight much too much to heart. I had wondered about David's family. Wondered about my place now that he is gone. Once, many years ago, David's Aunt Lois, who I liked so much, referred to herself as one of the "outlaws" -- inlaws who were not really part of the family. I could not believe that she could feel that way. She was integral and central to the family, at least in my mind. Maybe at some point, she had felt this sting.

My family of origin, my parents, were not generous. They did not really welcome anyone into the family. Inlaws might earn a place if they were useful, but there were ever open arms. I experienced David' family differently. And I might have been very foolish.
8:05 Monday morning and Julia is still asleep. We were up to all hours last night, exploring around our lagoon where Boardwalk and other hotels are planted. We found a beach to roast marshmallows, found another series of restaurants in the non-Disney, on-property hotels, and enjoyed the street performers on the boardwalk. And that was the end of the day, after Cheshire left for the airport and we had a long staying in at our room.

Yesterday was our out-of-park day, and I thought that it would be a quiet day. The only thing I planned was lunch at the T-Rex Cafe and a gentle walk through Downtown Disney. Downtown Disney is attached to (or is a part of) Pleasure Island -- that notorious place that turned boys into donkeys in Pinocchio. The whole place -- all of Downtown Disney -- fulfills the Pinocchio vision rather well. Much too noisy, too many stores and food places, and too many adults and children consuming. It was incredibly stimulating -- too much so -- and although we had fun, it was not the down day that I hoped for.

We did have a lovely early morning by the pool -- one of the pools really and the one that was supposed to be the noisy pool. Given the early morning and the coolish weather, there were only a few people there and only a few kids swimming. Julia went in and splashed around which is a good change from last summer's refusal to swim (Still don't know what that was about). We ate breakfast and sunned for a little while before going to the room to wash and prepare ourselves for the T-rex cafe.

And so, now it is time once again to complain about the transportation at Disney World. A person without a car must rely on the buses. The buses don't come often enough, they are all locals, and there is this peculiar plan that it is almost "impossible" to travel from resort to resort or park to park. All travel is planned to be from resort to park and vise-versa. My thought is that it is to keep people from traveling easily to the more expensive resorts, to keep them from going to multiple places in one day, and to frustrate everyone. We heard many people on the buses complaining, so, it was not just us. The solution seems to be to take your own car from one parking lot to another which is impossible when you don't have a car (which is also encouraged and makes sense at this sort of all-inclusive resort) and a little crazy to have to re-park over and over (are there multiple charges for parking during one day? I have no idea.).

We wound up taking a taxi from our hotel to Downtown Disney -- we got out to the bus stop with more than an hour before our lunch reservation, but found out that we had just missed the bus and another was not due for 20 minutes, and 20 minutes seems to mean at least 30, maybe 40. The wait plus the ride might kill our reservation, and we had Cheshire's departure to keep in mind which was hours away but just hours, not days. Mind you, I had read about the faulty transportation system so that figured into our frustration as well.

Just to finish up my bitching about buses, when we were leaving Downtown Disney, we took the bus back to the hotel only to discover that our hotel was the last stop on a very long bus ride. Cheshire pushed us to get off the bus at one of the hotels relatively close to us and an extremely kind bell hop showed us a short cut to our hotel. I am sure there are these short cuts all over Disney, and that employees are discouraged from revealing them. This does get under my skin.

But we did make our reservation, actually, went in early. The T-Rex cafe is loud beyond all measure -- real dinosaurs might not have made as much noise, certainly meteor showers did not happen every 15 minutes. Over stimulation is a tame way to describe it all. Julia was scared and she was in heaven -- both at the same time. We had delicious food and Julia even ate some of it but I wonder if she tasted anything. There was way too much to see and hear.

After lunch, we went to Build a Dinosaur -- a Build A Bear subsidiary. I had been planning to take Julia here since I found out about it, and the experience was more than satisfying. Lizzy the T-rex will have her own photo display here. We shopped a bit -- I still don't quite understand the fascination with all things Disney although I admit to thinking, albeit briefly, about disney dishtowels and potholders. The magic is absorbed and goes straight from the skin to the brain.

Today is our last full day here. I will wake Julia up soon -- oh, I hope the rash subsides today. She was by turn itchy and swollen on all different parts of her body yesterday. I don't know how much the benedryl is contributing to the lie in. She held up pretty well, sometimes snuggling close to me so as not to scratch as much, wanting to please Cheshire and myself and our directions not to scratch, but I am sure it bothered her a great deal.

There is a movie on the beach tonight -- a resort over from ours. If we are back from the Animal Kingdom and ready for more action, we will spend the evening doing that.

I am feeling very far from Wisconsin and a real life right now. Inspired by my conference but floating pretty free of responsibilities. Very nice indeed for a little longer.

Pictures of Epcot and the hotel

17 April 2011

17 April 2011

Sunday -- (I am writing a day behind.)

Saturday was lovely -- a bit overcast or not intensely sunny which made for pretty pleasant walking around. We did Epcot, hitting most of the big rides, -- no space adventure (?) for us and none of the country movies -- met some classic character which again impressed Julia, and finished the evening at the Mexican restaurant from which we watched the fireworks show. Julia showed a bit of strain after hours in the world of the future but that place was crowded. I had read that Epcot is terrifically spread out (and that was my memory of it as well) and there were obstacles, like breeze-blown water from fountains. It was also just not as much fun for Julia as Magic Kingdom. Still, she was quite a trouper. We went back to the room in the late mid-afternoon, Cheshire and I to nap a bit, Julia to color or play on her leapster, and that reset Julia’s tolerance for more.

Yesterday, Julia broke out in a very itchy skin rash from the sun screen that Cheshire applied on Friday. Julia had the same problem a few years ago and I changed sun screen. I thought I had brought the right one on this trip. We have not been in intense sun for hours yet, but today was planned as our “quiet” pool day and I had hoped to hit the beach for a short time on Tuesday or Wednesday when we visit grandpa.

The rash did not show up until 24 hours after it was applied -- as we were ready to go out the door yesterday morning. Thankfully, applying sunscreen was the last thing before leaving that we intended to do and just were ready to do it. Julia complained of itching and the rash seemed to bloom before our eyes. I stripped her immediately and put her in a bath and fed her benedryl. This helped but wore off at our late dinner at the Mexican restaurant. Poor kid, itched, scratched, and tried to refrain from scratching during the whole meal. The very sweet waiter brought us ice wrapped in a napkin and we applied it to various parts of Julia’s body that bothered her the most. She seemed much better when the meal came -- she ate all of our rice and some of my very delicious pork mole. She also tried and liked guacamole for the first time! She had tried it before at home and never like it -- I thought it was mostly texture as she doesn’t really enjoy thick pasty food. Oh, what an awful description for some of my favorite foods. Last night, she ate some that I fed her and then dug in herself. So nice if we have a new food that I enjoy.

We continue to battle the rash which erupts every few hours on different parts of Julia's body. I found more benedryl, and Julia has either in the pool or bathing a few times today. Poor kid looks swollen and is trying her best not to scratch.

This fountain is in Orland airport, but Julia was so excited to be "in disney" that she wanted to take a picture right away! I loved it. Also, notice how her pig tails are high on the side of her head. It was as if she was growing mickey ears. Weird.
Waiting patiently for mom to be ready for our pre-conference meeting. Yes, she was the only child at the meeting and she was just great coloring and drawing and making dinosaur small talk.
Snapped by Cheshire on the bus going to the Magic Kingdom. Do you think she was excited??
First sighting of Cinderella's castle. Ah, the magic.

This the the beginning of true love. Julia is still saying that Pinnochio kissed her and that she loves hime.
The true loves gives Julia a flower. What a smother operator! Besides if he was lying, that nose would grow. Right?
The wild duck!
Julia explains her drawings to Belle and Belle was really interested. So, the back story here is that I did not buy a autograph book for Julia and I was right to guess that it would not really be such a big deal for her. However, she did want to have characters sign her book when she met them. She was actually delighted to do it in her newest sketchpad.
The princess thing was beginning to wear thin by this picture but it was such a nice on on Cheshire.
Ears, ears, sequined mouse ears. Do all little girls look splendid in mouse ears?
After the evening's performance of La Nouba. Some cool hats, huh?

16 April 2011


David and I, and admittedly more David than I, came close to despising places like Disney World. Nothing is real. Out of swampland rose a “magic kingdom” with rides, amusements, restaurants and more stores than in the Mall of America. It was in no way organic -- people did not gather for pleasure in a simpler time at a beach or a lake here in Orlando. The beach and the lake were dug and sand imported. No natural beauty was demanded attendance, no ancient religious rituals gathered natives from far and wide to celebrate yearly festivals. But 20 years after our last visit, which was our third (excused, at least in our own minds, that we were visiting David’s father and Claire and so might as well experience what so many people talked about), Julia, Cheshire and I allow ourselves to be embraced by the magic of this ersatz kingdom.

And magic, in very carefully controlled terms, it certainly is. And I have the pictures to prove it.

But it all takes time -- I forgot, or never knew, how spread out it is. Transportation takes forever, and although incredibly friendly, the “cast” will direct you to walk in the longest way possible between any two points and will parade you in front of every retail establishment known to man or beast helping you get to your destination. Just what part of frustration don't they understand?? (And of course, this is why the Unofficial Disney tour book and others like it exist).

So, I channel the curmudgeon spirit of my dear David and let it go to enjoy what certainly is magic.

And it is magic.

We are staying in a lovely room, in a very lovely resort -- paid for in part by the conference that I attended, and helped along by the “conference rates” for everything from room to park tickets that we are entitled to use. Boardwalk Inn is a lovely, if not almost too big, resort. Every room has a balcony for early morning and late night sitting -- ours faces a very quiet internal garden which is not at all exciting in the evening (thank, goodness!). It is big enough, lush enough, and efficient enough to feel vacation as a noun and a verb.

There are some strange things -- no map at check in. Hence, the necessity of bringing something from home, or of course, buying it on arrival. And although everyone is helpful, solicitous, generous with advice and help, it is on a need to know basis. As in, the cast member who checks you in will not recommend a particular restaurant but will direct you to a plethora of possibilities which can be mind numbing, and for which you had better have made a reservation for two months. (Again, thanking the gods, the cheat books and my cousin in London for that advice).

I went conferencing yesterday -- content will be discussed later -- in a lovely conference center in which all needs were met almost by magic -- a faulty mike replaced almost before a speaker finished her sentence, an additional table appeared and was set without one attendee looking rather lost as he realized his hands were full from the buffet and all the existing seats full. Even my small challenge getting on the internet our first evening here was taken care of first by a tech support phone call (the best tech support since my federal court days and those guys were the best!) and the next day, by an early morning visit which took care of whatever problem there was.

And so, with creature comforts taken care of, and beauty everywhere -- look at “green” Julia told me as we entered the property on Thursday, an apt exclamation for our garden-starved, spring-Wisconsin eyes -- we eased into vacation.

While I conferenced yesterday, Cheshire took Julia to the Magic Kingdom. The pictures say it all -- hours of rides and characters and kid fun. Julia was kissed by Pinocchio and proclaimed her eternal love. She loved her sequined ears and was savvy enough to ask for ear plugs and head phones when the noise got too intense. Although on that last note, Julia did not use plugs and phones during the day and Cheshire assured me that it was sufficiently loud to require them. Julia did need auditory remission at the very loud Puck’s restaurant, touring the Disney Marketplace, and certainly at the Cirque du Soleil show. But again, she was in charge of when to put these things on. Julia is learning to control her environment or just to control the effect that the environment has on her.

The Cirque du Soleil show, La Nouba, was spectacular. Cheshire loved the music; I was thrilled by the visual elements which incorporated an eclectic mixture of French cinema, Comedia Del-Arte, shrill institution, and circus. The "acts" incorporated into the show -- trapeze, juggling, trampoline, uber-biking, tiny Chinese girls with two handed yo-yos, and a few more -- were all very well done and many times so imaginatively conceived as to make me really giggle. It was very loud and intense and too much was happening at the same time -- Julia was, for sure, over stimulated, but did great and was very excited.

It might become the theme of this vacation -- transportation within the "World" sucks. We were misdirected and not told about logical or short cuts getting from place to place. Friday night it almost cost us our dinner reservation, and produced a lot stress as we wolfed down food and ran to our show.

For me, the day was incredibly long, intense -- like at least three days in one.

Still, sweet day, good show, we all fell into bed exhausted with alarms set for Saturday.

April 14, 2011

Disney has been busy and my first night's internet connection was impossible. So, I have been typing offline and taking pictures.

Time to play catchup!


On the flight to Disney and my conference. We will arrive in the early afternoon and Cheshire will get there tonight. Can’t wait to see her.

Disney travel feeds into my planning compulsion. I’ve always micro-planned vacations, David would have said I over-plan and it was always a bone of contention between us. Still, I claim that we saw more, did more and knew about more when we travelled. Don’t know who was right.

Disney encourages compulsion! On site guests can make meals reservations 180 days before they arrive. Even I am not that compulsive, but . . . given the opportunity, who knows. I did get at least a meal a day reserved almost a month ago. Of course, that means that I had to commit to a park within which we’ll eat. So, I did ask Cheshire about a month ago which park she would want to take Julia to on Friday -- the day that I will be in conference.

And deals expire on certain pre-travel dates and so encourage planning. Having the conference at Disney entitles us to a slight discount on entry tickets -- a deal that expires the day before travel. When I bought ticket, I had to designate where I would pick them up and when. Again, more of a plan put in place.

Hopefully, we get a pass to avoid some of the long lines. It is offered to parties that include a disabled person. I have a note from our doc, and Julia should qualify. I really don’t know how much time this will save, but more important, we can usually wait on one long line a day. So, either we will zip from ride to show to ride without lines, or we will choose a very few long line rides or shows and do that for a day and spend the rest of the time at the pools or walking around.

When David and I went to Disney before Cheshire was born -- as part of a vacation to visit Dad and Claire in Deerfield Beach -- we reserved a hotel and check out park tickets, and we may have arrived early at one or more of the parks, but that was the only planning we did. We wandered around rather aimlessly, skipping long lines and going back to some of those ride or shows later. And I think, we saw most of the attractions. “They” say that doesn’t happen anymore.

This time, I have refrained from making and ordering the customized attraction maps of the parks that are available online at Disney.com. Too much feeding of my compulsion; too much enabling.

Julia and I had a hard morning on Tuesday. It was foolish and unnecessary and this time I was the one who dug in my heels. I wound up yelling at her. All over the way she flushes the toilet. Granted, she tends to flood or not completely flush. And her jiggling of the lever drives me nuts. Still, doing an ABA-style discrete training during which I made her repeat a feasible way to flush - something she was almost unable to do, especially with my yelling in frustration - was awful. Julia almost missed the morning bus, and only made it running out the door and calling for it to wait. I threatened that I would let her miss it if necessary. Foolish, foolish. And I did not like myself afterwards.

However, the spirit of this child rises and roars. When she got off the bus in the afternoon, her first words to me were, “Are you ready to apologize to me?” And I did. That was a phrase right out of my childhood, and I never use it with Julia. Where did she hear it? Is she channeling my mother? Now there is a scary thought.

Later on that day, I had a phone session with Ellen, my energy healer, and we talk about the twin towers of guiding principles that have long plagued me. I believe in both structure/tradition/establishment and free thought/creativity. On one hand I would have loved to spend my whole like in my village of birth -- okay, my suburban Jersey town of birth. I would have loved to follow the rules, and live according to the customs of church, family, and the middle class. But I never could. As much as I longed for it, the basic decisions that I instinctively made tore me away from that life. On the other hand, I wanted to be wild and crazy -- live the extravagant, self-indulgent artist’s life in NYC. But again, I was pulled from that by the gut feelings that bound me to my internal suburbia.

The relationship between these two ideals was all out and total war. If one was right the other was wrong. And that was the only way it could be. I come by this idea of the black and white of right and wrong honestly. It sounds so much like my mother. It is my mother.

What Ellen talked about was a middle way, and more importantly, an end to the fighting. Ending this war holds the promise of eradicating the feelings of frustration, the feeling that I never get anything done. I was reluctant to fully engage with Ellen this time. It was harder work than what we have done before. It felt closer to some core-principles.

I cried long and hard after I hung up, not even sure why but feeling the raging battle of structure versus creativity welled up and overflowed. Then, thoughts of David came up and I realized that David lived with much the same dilemma and walked the line between the two much more gracefully than I do. Not perfectly, by any means. And not without plenty of time and energy pumped into the battle. However, before the end of his life, he had managed to find some middle ground, some mutual solution, using both sides without compromising some essential part of himself. I am seeing it as I spend days and weeks going through his papers. I did not know and could not describe what I was looking at but I see now. I also saw it in the last theater piece he wrote -- written between the transplant and his death and performed in February.

And so, plenty of tears as well for missing him -- my partner, my teacher. We would have talked about this. I know that like Dorothy in Oz, that I had to discover the idea of mutual solutions myself, and I know that I am learning this lesson when it was time to learn it. But this learning is really moving on from David. This is discovering something new that I did not know before. And I miss not telling him. Not as my physical, right here, partner and friend.

It took an entire day to release some of that hard work and bad feelings. Still, yesterday (Wednesday) I was caught in my own trauma, dealing with the UW clinic that prescribes Julia’s ADHD meds. I needed a few extra of her Adderall to get me through next week. After two days of getting in touch over and over, and being assured each time that it would be taken care of and that I would be called back, I was told at 5:30 p.m. that there was nothing they could do because state law would not allowed the pharmacy to release these meds more than 7 days ahead of time. And yesterday, was 7 days ahead. Of course, that was the last of several stories I had heard during that day, and the problem really began because my doc did not get back to me or respond to my message at all. Some serious flaws in this system, and it is about as user unfriendly as it gets. Frustration does not describe the process.

I did lose my cool. I was the ugly patient, or ugly mother of a patient. But even in the cool light of the next day, when controls and rationality have been firmly re-established, I cannot see any way that I could have improve the process and see all too many ways that the clinic was inefficient, ineffective, and just plain wrong. I don’t think that Julia’s state health insurance will allow me to change providers which I would like to do. This was not the first frustrating, inefficient encounter I’ve had with this clinic, but this was the first time I had to travel without the medication that I needed.

The clinic office manager who stayed 30 minutes after the clinic closed to try to sort out the inefficiencies and mistakes pointed out how much she had tried to help me. She apologized. But still did not get me the meds I needed. It wasn’t her fault -- it was the doctors’ faults, the receptionists fault, the pharmacy’s fault, and the new state law.

Yes, by the end of the day, I was a bitch. Thank goodness, I was not a bitch with a weapon. Sometimes the good judgment of believing strongly in a gun- free citizenry really pays off.

Julia and I spent the evening packing and getting ready to leave before 6 this morning. While I was packing, I gave Julia the job of making my bed. She had to figure out how to put the sheets and quilt on the big king bed and put on all of the pillow protectors and covers. It took her a long time -- 45 minutes or so -- but she did it. And she was tired enough afterwards to want to get into that bed and go to sleep.

Another interesting Julia thing, she is insisting on taking a book to bed with her every night. Right now, it is “The Merry Postman” She is so much a part of this family! How amazing that she has absorbed this -- yes, here is something that she has learned without our, now my, direct teaching.

I have been and will be spending time working on my trauma presentation which is due in class in two weeks. I only have 10 minutes to present and I’ve been trimming it down over and over. My rough draft probably represented a 45 minute presentation, and there is so much that I would like to share. But the focus is good for me. Maybe an all-important part of this leadership project.