Gosh, I am such a whiner! Estate work has been calling and I spent 4 hours yesterday and my entire morning today doing it. Maybe I don't have the temperment to be my own general contractor on the house renovation.

Now here is something that I don't like but cannot argue with. The next door neighbors to the Jersey house that was my mother's received a letter a month ago about the oil spill clean up that must be done. The letter asked for their signiture so our clean up company could go on their land -- that is, the front lawn -- to see if the oil from the old oil tank migrated there, where the oil is, and to begin to make plans to clean it up. The neighbors have not returned the letter and have not answered our clean up company's phone calls. I talked to my insurance guy 9 days ago. He told me that they were now trying to get in touch but if I could do something to get in touch that it might help. I called a few times before Thanksgiving and also asked one of my sisters to do the same, as she knew them better than I did. I talked to my sister today, who admitted making many calls, leaving many message, but never talking to the neighbors. The neighbors did not return my two calls either.

I called today in a last ditch effort before I called the insurance guy again tomorrow to tell him that I failed. The answering maching came on and I began to leave another message. I spoke for awhile before the neighbor picked up and complained to me about all the phone messages, taking up her whole machine this weekend.

Now, I don't agree with so many calls. I think we are being rude, but gee, this is what it took to get her to pick up her phone. How many times was she home for the message?

People, people, people!!!

She wants a week to see a lawyer -- I didn't say she already had a month. She assured me she would call back next week. We shall see.

I just hope that she finds a smart enough lawyer who will tell her to go along with what we are doing. It is Jersey law, not our whim. You would think that the neighbors might be inspired by the empty house next to them, which is never good, and the rusty oil tank sitting in the front of the drive way next to their lawn, which could not be attractive. Should I consider stringing some Christmas lights to point out our driveway ornament?

On the other hand, we are adding more time to our process as each day passes. This easy part of getting their signiture has already taken a month. Another month.

The weekend character: A mouse who was ready t odo all sorts of things.

Walking to brunch between Sarah Grace and Cheshire. I could not ask for two better role models for Julia to look up to. Julia could be quiet as she watched her sister and friend talk and have fun together. It warmed my heart to know that they took her in and shared what they were doing with her, and also that she wanted it so much. Of course, being so far from both of these marvolous young women is not easy for me.

Saturday

The turkey that is left is on a dessert plate covered with plastic. The mashed potatoes, gravy, stuffing, and stringbeans are gone. There is another two or three plastic containers filled with our various cranberry sauces. We have some biscotti left and a complete pumpkin pie. The house is quiet with all of our guests, dinner and stayovers, gone. The house is quiet with David dosing and Julia watching a Charlie Brown that I've never senn before.

Thanksgiving is over.

Julia is so very interested in Christmas and even David suggested we put up our tree early. If the day is warm and sunny tomorrow, Julia and I will put up some lights. She loves, loves, loves the lights that are already up in the neighborhood.

Julia's behavior has been pretty good with all the people in the house. She has been kind, pretty gentle and interested. She has answered questions and seemed attentive to our guests. She loved being with Sarah and Michael. She loved being with Cheshire. Last night, we all sat around the dinner table eating leftovers and Julia said grace and then raised her hands saying, "friends, friends." Later, when I was putting her to bed she told me, "Mommy, I love everyone." This is a child who appreciates the love that she is given more than anyone that I know.

I would guess that the meds are beginning to kick in. Right now, Julia is laying in David's lap as she watches tv. This is another notch down in relaxation for her. She may also be more articulate -- using more appropriate and complicated words.

Because of our guests, Julia has been sleeping with David and I. She wants to do it again tonight and I will let her. We talk about her falling asleep in her own bed without one of us laying down. We've been walking about it for awhile now. Oh, I am hoping to implement soon, but snuggling with that girl is such a joy.

Sarah Grace and Julia

A day, a table, and a feast

The Thanksgiving harvest goes on the table.

The feasters feasting.
More feasters doing what feasters do.

Wednesday

Last time I wrote was Sunday; now, it is Wednesday and . . . I have lost time. I love that phrase . . . lost time . . . found time . . . no time. If time is like Einstein said, then it is so much preception, but I really do not understand because if I did, I would have had an extra hour or so for sleeping.

I have my list, checked a number of times, and I need to fly today to get it all done.

Just a moment.

Julia's surgery went well. The doc took out a much bigger tooth than I thought was there. Really good that it did not try coming in. It would have really ruined her lovely teeth. I gave her one dose of pain medication yesterday and then she insisted she felt fine the rest of the day. I have no idea how much this hurt but she did not complain. She was a bit lathargic yesterday but did not really settle down until bed.

And she was so brave. She told everyone she could that she was afraid and that she didn't want a shot. Lots and lots of words. Funny reactions to the medication that put her to sleep -- very loopy. She looked awful when she first woke up, but did not rage or tantrum. I was so proud! She wanted me and held my hand. She recovered quickly, dealt with the blood that continued to ooze from her mouth without worries, and went home happy after a ride in a wheelchair.

I kept her home from school yesterday, doc's orders. She did not really need it and did not want to go today, but she is such a trooper.

Today, I can report that I think the medication -- her guanfacine -- is taking some of the edges off her behavior. Just a bit less of the resistance.

okay, so much on the plate. Better start running!

Sunday before Thanksgiving

A good Sunday. Church in the morning. Unfortunately, Julia's class was taught by the boring lady. Fortunately, the kids spent most of the time outside and Julia and her aide walked the grounds instead of listening. Julia ate the snack with the other kids and was very happy to see us when the services were over.

We did not have therapy today and I needed to keep cleaning for Thursday. So, Julia played to her hearts content while I gathered dust, washed windows, and put stuff away. I brought lots of bedding to my neighbor's empty apartment that we will use as extra bedrooms. Vacuuming and washing floors comes tomorrow, AND sorting the kid's toys. I should finish cleaning tomorrow and have Tuesday and Wednesday to finish up with the baking and cooking prep for Thursday.

We were watching the old Grinch cartoon and when the Grinch's heart grew three sizes, Julia asked about the heart being outside of the Grinch's body. Well, it was the perfect time to start talking about David's heart. We told her that Daddy's heart was not working well and he needed a new heart. She asked a question about whether they were going to open Daddy up in the hospital, and we knew that she understood.

Later, getting ready to sleep, I read a new book about the body which Julia really liked. When I was finished reading, Julia asked about my heart, about whether it was sick, about whether it was too old, about whether I would need a new one. I assured her that my heart was not too old and was going to last me a long time. She seemed satisfied, and then said, "Mommy, I love science."

She is such an interesting child.

When we got home from school today, Julia and I cuddled on the couch. The past two days Julia has given me a lot of eye contact. Today, she even said to me, "Look at me, mommy!" She is talking to me when we cuddle.

Our line therapist of the day, Ellen, told me that Julia played a number of times this afternoon about not being invited to a birthday party. One little pet told another that she was not invited; and later one pony told another that she would never be invited to a party. I am sure this happened because it is not part of any story that Julia heard or saw. If she is upset about not being invited to a party, she is understanding that someone was unkind to her and maybe that someone is excluding her. I am both so very sad that Julia has to experience this, but so very excited that she is paying attention and understanding this human interaction.

Currently on Julia's Christmas list is a hand held little pet shop game, a venus fly trap, and a fish.

I asked on the attach yahoo board what I could do to make Julia comfortable with the heart transplant procedure. We will not have time or warning before it happens and just telling her about it doesn't seem enough. I have been working on a story but that too does not seem to meet what I need. Another mom suggested a felt board with pieces that can tell the story about what will happen and that will allow Julia to work with the story the way she wants. This is a marvelous idea and right up Julia's alley. I thought about making it -- Too time comsuming right now! Buying one -- can't find anything that is about a hospital (which I thought I could enhance). Went on Etsy.com and left a request for someone to make one.

Friday morning

Thanks for the comments about our current challenge. Most of the time when I am writing, I am journaling and not really thinking about who is reading or that there is anyone reading. So, comments are almost always a surprise, and now I don't know if I will ever be able to go back to the solitary journaling life. I like the surprise.

And I do feel the love, the support, the wishing to do more. I am sure that I am bouyed up and my courage is high because of it.

Thank you.

I love ebay! That is where I get many of Julia's pretty dresses -- Hannah Anderssen is my favorite but who can afford full price for those school dresses? I've also enhanced my dish set using ebay. Our dishes were made by Dansk, a Danish company, and the set was retired in the early 2000's, but there are enough odds and ends left out there to find additional pieces. Buying the pieces from a dealer would be impossible because the prices made our ordinary dishes sound like rare china, but there are usually enough on auction at ebay to get pieces at a reasonable price. So little by little, I've built a collection and if I have counted correctly, all 20, okay 19 plus a baby, will sit down to a dinner plate next Thursday.

Gosh, I still have to dig up/buy something for tableclothes. Well, after painting and cleaning -- does that make it Wednesday of next week?

Julia's medication was upped by .5 mg. David is disappointed that he did not push for a change of medication. We are too inpatient to see change. Okay, so is there anything in our lives that does not teach patience?

Busy day and all I want to do is stay home and finish the hall! Ed, the handiman who I might have to start calling our contractor, finished his part of the back hall. I have cawking, painting, cleaning and arranging to do. I will not get to it until tomorrow. It looks great -- clean and put away. We'll see how it looks when coats, hats, scarves, gloves, etc get in there. I still haven't figured out what to do with shoes, but this is a beautiful start. It looks like I envisioned it and it looks like I'd like the rest of the first floor to look -- very built in and neat.


Pictures will follow.


I took Julia for her pre-op at the doc's this morning. She is getting her extra tooth out on Monday -- in the hospital with general anesthesia which is very necessary. She is fine. Her behavior at the doc's office was better than ever. Still, she is a peculiar child, but peculiar is okay. We are working on eye contact everywhere we go now, and I am seeing a bit of results -- that is, eye contact without being asked. I believe she will learn this and this behavior -- eye contact when people talk to her and she answers will help her tremendously towards looking acceptable.


We still have sound to deal with.


I go to another legal CLE today while David picks Julia up and takes her to the doc for medication, and then to AT. He has only met Marilyn, so I am interested to see what he says. We may have the evening off from therapy tonight. Bad for our monthly hours but very nice for us to have lots of reading time and snuggling while watching tv time.

Ah, private family time. It is nice once in awhile.

Day 1

David just called. Insurance has formally approved and he went on the heart transplant list at about 2 pm today.

Now, we learn patience.

Almost listing +1

I have a post that I started two days ago. It has two sentences in it and I just can't get up the gumption to keep going. It is this new adventure that is on my mind.

A heart transplant.

There is a TV show about this stuff. How could it be happening to us? To David, I know, but as we have been a team for almost 30 years -- a formal team for almost 30 years, a team from the moment we met which was about 6 years earlier. So, it is happening to me, him, us all at the same time.

I have this strange but absolutely normal feeling for me, that I can write my way through this. I have been journaling about everything important, not important, self-indulgent, or otherwise, for a very long time. Longer than Cheshire has been alive. It used to be in notebooks and then pretty leather bound books. Now, I have this screen and sometimes commenters who make it feel like I am talking to someone instead of myself. So much of this is to myself, but I like the openness, the publicness of the forum. As if, I can be assured that I am not nuts, or maybe that sometimes I am nuts. Reality check.

After our first shock, the evening of the first PTO meeting that I acted as president -- which in itself was strange because I came home all pumped with adrenlin and David had to talk about what the docs had said to him. He very sweetly had let me concentrate on the meeting and keep it all to himself until I was finished with my busienss. So, on task, after the shock and fear, we/I have become amazingly comfortable with this journey/challenge/adventure. And that is what it really is -- a challenge to meet. I do not feel the hand of doom on our lives. I am not crushed by it. I do feel the need to sort of check myself every so often to see if this is still my experience -- how have we managed to feel so upbeat about all of this?

I have never taken David as an optimist -- yes, in art but that is a passion where optimism is part of the pre-assembled equipment, but in most things is life, the guy tends to see that glass just a bit less than half full. But in this, this scary, thorny, operation that could fail, that he could have NOT qualified for, he is sure it will work. And I am.

It is as if this is a path that we knew we would always have to take and so we have been preparing for a very long time.

I worry about Julia. I know we will have help and support to get her through this but I am worried about trauma and pushing her back. Again, it is life, and part of her life, and she will be more supported for this trauma than she ever has been. Still, mothers worry.

And now, almost on the list.

David got the call from the heart transplant team. David has cleared all the hurdles and is medically qualified to get onto the heart transplant list. The next step is to get a pre-approval from our insurance but since they have already been contacted, we expect that by the end of the week, or Monday at the latest, he will be on the list.

And then, the wait will begin.

This reminds me so much of the wait for Julia -- waiting to decide to adopt, waiting to find her on the list, waiting for China to tell us we could adopt her, waiting for China to tell us we could travel.

We have been well training in waiting.

Tao of householding

Julia has been a whirlwind today -- with behavior that is all over the place, but work that is what she has not been able to do before -- sequence cards with sentences and taking turns to tell a story on a picture board. Big therapy day, as Mondays are and hopefully we can reduce a bit of her load soon. She was in school until one, then OT, then speech therapy, then two therapists, one after the other, at home. She is fidgety, not directly listening (and not always answering as a sign of listening), demanding, stubborn, wanting her own way in all things, but brilliant. She has started making parts for her clay characters and attaching them to a main body which is a new practice for her. She was listening to Christmas music on Sunday, and started drawing these wonderful reindeer. Oh God, I hope that she can develop sufficiently to use her talents! I wonder what it will be like to know a Julia who is grounded and able to stay on task in any conversation, is able to learn what someone wants to teach her. She could . . . then, I wonder what it will be like to know a Julia who is never able to live without my care, a Julia whose development is always delayed and always very far behind her peers.

Then, I put my own feet on the ground.

I am painting -- trim takes forever! and raking all those leaves that blow over from my neighbor's (who does rake) lawn. and baking. And I better start cleaning for next week as well. Finally, after not working for almost three years, I really like this. I am doing nothing incredible, like I always expected to do. Ego. Yes, ego. Goals refer to Julia and what I can do for her. Goals are what David is going to need. Goals are about making David, Cheshire and Julia happy. I do not do enough. I am lazy. I do more.

I thought I was going to write about how I was doing all these household tasks and spent great amounts of quiet time and had thought some really deep thoughts. But I seem to be at a loss for really deep thoughts tonight.

I talked to another mother who has two girls on the same drug that Julia is on. Julia takes 1 mg in two doses, and with the sleepiness completely worn off, I don't think that it is doing anything for her. This woman's daughter's are taking 2.5 and 5 mgs a day, and she is happy with the results. David will see the doc this week to report on Julia's experience. I suspect that they will change/up her dose.

Information is here and here.

Saturday morning

Whether it is because of her drugs or some inner growth spirt, Julia is more interested in pleasing me. This morning I only had to tell her twice (as opposed to many, many times) to go upstairs and gt some pj pants. Instead of pj pants, Julia brought down clothes to put on for the day which included pants for her legs. She had changed her underwear and put on socks. She was definitely getting ready for the day.

We sat down right after school, before our therapist came over, and did some reading. Julia was not crazy about doing this at first -- who could blame her and when I thought about this later, it did seem like an awful idea -- but settled in after a page and at the middle of the book asked to move to the couch so that she could have my arm around her.

Julia is very snuggle based.

I have more painting to do today. I'll do it while Julia is in therapy. Because my handiman wants to finish up the job at the beginning of the week, I am forced to do my part as quickly as I can. It will be done by the end of the week and I will have my new "mud room". It will be good to get all our coats and bags and the dog's crate out of the kitchen.

We still wait to hear about David getting on the transplant list. Oh, this wait. The last doc her saw gave him a clear bill of health on his lungs. He did warn David that there was another test that could be done and he would not close the file until he checked with the heart doc to see whether he wanted that test down. Why do I think that David will be getting that test as well? There has been no reason to believe that David will not be placed on the list but the wait goes on. In International Adoption terms, we are waiting for our PA -- Preliminary Approval from China.

We have been schooled in waiting.

I am very energized today but sad and a bit scared. Yes, it is just change and this circling path of life, but not always easy just keep going with robust good cheer.

Later but still morning.

Amazing how much of fixing and making new is cleaning and going back over the old -- dust from sanding that doesn't come off with a simple vacuum, places where even two coats of paint didn't cover, places missed by the painting, old dirt on very old stairs. Metaphor for life? My life, anyway.

Sometimes Julia does with her therapist -- the ones who have been around for awhile -- what she will never do for me, and I send up prayers of thanks for that -- She suggested going outside to Ellen, and is now trying to ride her bike. Riding her bike is something that we worked on together more than a year ago and she just couldn't do it. Those core muscles are getting stronger. Bike riding is a Madison thing and she also sees it on tv all the time. She so wants to do what other kids do.

Back to my brown walls.

Friday and I am painting. That always makes me happy. I love the brown on the walls, it goes with the orange of the house and door but it much more peaceful. The soft yellow/tan of the cabinent is welcoming. Now for the off white of the ceiling and woodwork!

Julia had a good morning. I see her happier on the playground, not playing with many kids but happy nonetheless, and she got right in line when the bell rang. Ah, so nice to see.