30 November 2009

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.

29 November 2009

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.

28 November 2009


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.

26 November 2009

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.

25 November 2009


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!

22 November 2009

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.

20 November 2009

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?

19 November 2009

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.

18 November 2009

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.

17 November 2009

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.

16 November 2009

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.

14 November 2009

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.

13 November 2009

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.

11 November 2009

Someone asked if David's impending surgery could be the cause for difficult behavior from Julia. Well, possibly and of course, but no matter the cause, the behavior is still difficult. Much like today -- I have been busy for two day with CLEs and Tuesday night at a PTO meeting. Julia gave David and the therapist that was here a really hard time refusing to listen or do anything. By the time I got home, the tension in the house was palbable, and Julia fawned over me telling me not to be disappointed and not to be angry. I had no idea what she was talking about until David told me about her behavior. I sat with her then and talked to her. I took her in my arms and we cuddled. She told me about her bad behavior -- not the reason -- but the hitting and yelling and not listening to Daddy or Morgan.

I had changed her routine. I was not there for two days to pick her up from school, and on Tuesday, I was gone during the evening as well.

Today, Julia had the day off and after early morning therapy we spent a pretty lazy day together. We spent two periods of time doing school work. First, we made a calendar from today until Christmas. Julia has been excited since Halloween talking about the order of the holidays, including her birthday on Jauary 16. She liked making her own calendar but I had to coach her writing every number. Her understanding of the concept of numbers is very delayed.

After we visited Marilyn, Julia and I worked again, this time on her reading. We did review and new sights words and then worked on writing using a popcicle to separate the words. She was very patient working. At just one point she got frustrated and then angry because she couldn't remember how to write a letter. I was able to talk her down and tease her a bit about asking for help. Our time went well.

One thing that Marilyn suggested today. We have been working on getting Julia to look at people when she talks to them, especially when she says hello and goodbye. We make sure that she make the eye contact with her therapist and with us, sometimes with her teachers. Marilyn suggested that we tell Julia that the person she is talking to will really like it if she looks at them when she is greeting them or saying good bye. In truth, I would have not thought of this, jus assuming that Julia knew this but how would she know? Sometimes teaching needs to go so far back.

09 November 2009

Monday Evening

Julia had a good day at school -- all smiles on her daily report -- and some very good work at OT and speech therapy. However, she was incredibly tired at speech, falling asleep on her hands at the table. Of course, my dear girl will not admit sleep and would not take a little nap. She shook herself awake and continued on. Some of this is drug induced but the refusal to take the nap is very much Julia and her vigilance. It is incredible that she will even sleep during the day, even it is for a few minutes. For such a long time, she would not do it at all. Admitting to needing and then taking a nap will come, but I think we have some time to wait.

She was able to listen to Annie (OT) and do a writing exercise that included circling words (the intent was to show her that she needed to leave space between words so that she could circle her own words). She was quiet and intense. In a sense, she was concentrating on an activity was was not of her choosing and was far from her usual interests. I had the feeling that she was almost following directions for the first time. Words are not expressing what I saw very well, but there was something very deliberate in what she was doing.

It felt like one of the "small step" moments.

Then in speech, she was working on sequence cards. Her therapist, Kara, had Julia describe in a full sentence (which Julia apparently knows is more than a single word or even two words) what was going on in the card. Kara wrote out the sentence, then Julia put the cards in order, the sentences in order, and Kara put "first", "next", and "last" in front of the appropriate sentences. Julia then tried to read the sentences. This took awhile but they did two sets of cards. Julia showed lots of patience.

Julia did not sleep in the car ride home. I was hoping that she would. She was grumpy with both of her therapist tonight, but did manage a few good exercises with them, including building a lizard house out of Popsicle sticks. The kid had a long busy day.

You know, I would love to get behind those eyes and into her head. What I would give to know what goes on in her head. But I only guess.

Tonight I have been working on a redo of the proposed listserv guidelines for the PTO meeting tomorrow night. Mostly, I was straightening out the proposals from last year and shifting paragraphs and fixing language. A little boring but the kind of detail that I always love. We've talked about these guidelines for two years and I am going to get them passed either tomorrow or next month.

And another check to put on my list!

New week!

Monday morning: Julia is grumpy! Very resistant. I offer her choices -- getting dressed or sitting on the step (her time out place) -- she controls herself well enough to chose getting dressed, but all the time she is telling me how she will hurt me, including letting the giant lady bugs bite me. Each idea she comes up with (and she is not threatening me with hitting or some other punishment with her hands, etc.) I turn around and it is clear that she doesn't want to have these bugs, dinosaurs, or rhinoceros to attack her. I give her the general rule for the first time -- Do unto others . . . , in plain English of course. She reluctantly eats but when she gets up she takes the whole table clothe down, spills a glass of water and lots of crumbs on the floor. Nothing is hurt but I am really frustrated and yell at her. She listens, does exactly what I say, and then when I am doing her hair, tells me that she is scared of me. I do apologize to her and explain my frustration. I think I lose her on my explanation.

Oh, I don't want this precious child scared of me, but why can she pull it together so well when she is scared. I know that it is good that she can tell me exactly what she is feeling. How I wish she could learn not to be so difficult and frustrating!

We have slowly re-integrated gluten into Julia's diet, and this weekend, she had a piece of pizza and a piece of cheese cake. Is some of this behavior due to this? Is it due to the drug, which has a side effect of irritability? Is it just normal irritability?

I don't think the drug is doing anything apart from making her sleepy at night, which is, of course, very nice. She is still not getting mellow and tired before bedtime, but she does relinquish herself to sleep incredibly quickly -- like 10 minutes! We have another week and a half before we see the doc.

We invited some neighbors over for dinner last night. They have three boys -- 9, 7, 3 -- and it was pretty chaotic. The things that usually work -- letting the kids eat quickly and watch a movie, or letting them play with all the toys in the house and come to the table when they are starving did not work. The dad wound up taking the 3 year old home because he was just too tired, the 7 year old ate supper on our deck out front. Only the 9 year old watched the movie with Julia. David and I did manage a good conversation with the mom. And none of the behavior bothered us in the least. In fact the relief was the it wasn't our kid causing the disruption.

David goes to three doc appointments this week. Hopefully, all will be resolved by the end of the week and he will go on the transplant list.

06 November 2009


For a few years before Julia came home, I started collecting silver candlesticks. These days our house does not have sufficient storage to keep these close enough to use often, but I took them all out yesterday to wash and polish to use them on the Thanksgiving table. I like silver -- the shine on the table twinkling in fire light. I'd like to have a story for every candle stick. Maybe one that belonged to a maiden aunt, another from a grandmother who brought the silver from the old country, another which was a gift to my parents from a relative that they had never met. Instead, they are mostly from ebay with a few from a friend whose brother trolls estate sales for treasures.

Three more bat pictures

Three more pictures of my little bat taken just before we went out trick or treating. Julia was so excited and did a very nice job of smiling and looking at the camera.
Today, Julia had a good day at school and a pretty good day with her therapists. She was not tired today and was still chattering as she headed upstairs to bed. Ginny, at school, said she was not seeing any real difference at this point.
I woke up, this morning at 5 when Julia woke up, and clearly realized that I am just not slightly uncomfortable asking for the help that we will need when David's beeper goes off. I absolutely hate even the idea of planning for it. I am pretty sure that if I don't plan, Julia's life will get chaotic and that going this alone is not an option, but we don't have the natural support group -- family and long time friends -- here. Forcing myself to do this is in order. Uck!

Why is it so hard to ask for help?

05 November 2009

Just before bed

Julia was exhausted when I picked her up today to go to Marilyn's for therapy. She spent a lot of our time with Marilyn siting next to me. If I didn't know that she was on a drug, I would assume that she was getting sick. She perked up a little bit when we got home, but was very drossy when she did her reading work. I took her upstairs early and after two short books she was asleep within 10 minutes.

A side effect of this drug is sleepiness. It is unnerving that we are making Julia sleepy. Marilyn asked if this mellower Julia was a relief. I like the extra snuggling, but I don't like a sleepy Julia. Relaxed, yes; trouble keeping her eyes open, not so much.

Marilyn urged me to get my support system ready. I am very casually working on it but I need to get into higher gear if my airm is to keep Julia's life running as regularly as possible when the beeper goes off. I found a website for a book called Share the Care. It is aimed care groups for person who are terminally ill, but it provides a frame work for gathering a group of people who can keep life going while someone is ill. It is such a challenge for me to ask for the help that we are going to need.

more domestic goddessing

Taking a break from cleaning kitchen cabinet and draws. How have they gotten so messy! I started re-arranging for our Thanksgiving feast and realized that a good cleaning out was what was necessary. There has never been enough room for all our kitchen/dining room stuff in this house and then this summer I added some more stuff that I brought home from my mom's house. Can I say to the kitchen cabinet designer in my future, "look at all of my stuff and design cabinets that it will all fit in plus 15% more space for the future."? Our Indianapolis house did not have a dream kitchen by any means but it had lots of storage for dishes and pots and sundries. I just flashed on Little House on the Prairie when Laura and Mary got their own spoons for Christmas. I guess storage was not that much of a necessity then. But no, I do not want such simplicity. I really love kitchen stuff and having enough plates for a big dinner party and wine glasses to spare.

A simple miracle which has also inspired kitchen cabinet cleaning -- my dishwasher has decided to come to life!!! Maybe it needed a rest for a few months? It was dead, really dead this summer. Last weekend, I mentioned having a repair person look at it and David took a look at it first. It turned right on! Well, glory be! I've been running it last night and this morning, cleaning all the plates and glasses that have been gathering dust.

And I am happy. Good that the domestic goddess kicked in this week.

Still, more bulbs to plant this morning. It is a bit of gluttony to order 250 bulbs but the penance fits the sin. Still, I know I will love it next spring.

The handyman is working on our back hall. He builds the cabinet for my storage baskets tomorrow. I should be painting by the weekend. This too, makes me happy. I love painting. He did point out some weak places, places where there were probably leaks, places that may not repair well. Ah, the joys of an old house.

Julia had her first morning dose of drug today. I think she is falling asleep quicker and she has had three very good days at school.

A good friend who is local and who I knew via adoption yahoo groups long before we moved to Madison, read the recent update about David and his new heart and has offered some wonderful support and help. I have fallen behind a bit on my support team building -- Thank you, Cathy, for giving me a nudge!

04 November 2009

Morning has broken. I've been cursing the return to standard time since the weekend, but this morning I like the morning light and last night the cozy feeling of closing up the house at dinner time.

We have breakfast with me typing away and Julia looking at a spider book and making appropriate comments. Nurturing a kid's interest is amazing -- I would have never investigated spiders, or dinoaurs, or worms, and yet, they are so interesting. She is going to have to find out that the whole mommy and daddy thing is not important to all animals but for now she names families in all pictures. Julia is caling me mama all the time. I could probably our attachment by what that child has called me.

Another thing that works with her. Julia gets angry at me for anything and everything. Her anger still outstrips the reason for it. She steams when I tell her to pick up those socks that she has left on the floor, or to hurry with putting on her coat. She will then hurl words that describes what she would do to me -- spit at me (a favorite), hit my nose, stomp on my feet, or run away. I have been asking in return if I should spit at her, hit her nose, etc., and she is firm that she does not want that to happen to her. Do unto others -- what it take to teach the old lesson. I hope that one day, I can turn it around to the kind and gentle things as often as I have to ask about those awful punishments these days.

03 November 2009

Domestic Goddess

So today, I am feeling like a domestic goddess -- a rare feeling but one that needs to be celebrated every so often. I dug up canna bulbs and cleaned them. They are sitting on newspaper on the kitchen floor right now for a final drying before being put away until next spring. Living anywhere south of here, they would be outside drying, but we are getting pretty cold at night and the bulbs can easily freeze.

Tomorrow, planting daffs and tulips, I hope.

I cooked a lovely African soup/stew with tomatoes, garbanzo beans, coconut milk, peppers, and favored with curry, onions and garlic. And a few cups of cooked rice. Very fall, very hardy. Julia had two bowls.

Julia helped me bake banana bread -- two big loaves with the bananas that I bought for church school snack. Too many banana to throw out and too ripe to eat. Julia loved mashing the bananas and mixing. She also like to open the oven to look at the bread as it rises. I turned on the over light for her to see into the over through the window but she says she can't see as well as when she opens the oven. Whenever Julia helps me in the kitchen, I have the feeling that she spent time working in the kitchen before she came to us.

Julia had a great day today in school -- all smile on her daily chart. She also had more to say about her day and it was not just telling me that she hates reading and math. We didn't have any therapy today (a change in the team), a pretty rare occurrence these days. Julia and I hung out together after school, besides cooking, we did reading and writing work (Julia has been not been so willing to write at school these days). I hope that if we work on writing some, she will have more confidence at school. I see that so many times, Julia is scared to do things she does not think she does well. She makes a fuss, gets angry and frustrated and acts out, when actually she is afraid to try to do something that she thinks is hard.

Oh, my girl.

November day

I started writing last night about so many other things -- fixing my back hall, cooking, planting bulbs, making compost, and by the way, how Julia was doing. And I just bored myself. I am not even interested in how I do most of those things, or how, or why. Do I really want to remember them or share them with others?

One thing that I can't seem to shake is that as I was walking the dog last night and thinking about how I can make my tiny back hall into a mud "room" and as useful as it can be. I was trying to remember where I used to hang my winter coat as a kid. My parents house had no mud room or conventient closet by the back door. I don't think our coats were hung in the front hall closet which was also small. Did we really put all our coats in the basement? I know we hung them there when it was wet and snowy, but all the time? I have absolutely no memory of what I did for years and years as a child! How appalling!

Today is one of the golden fall days -- a bit cold, but sunny and without wind. My plan is to dig up canna and put in daffs and tulips, and then sit back and imagine my spring riches!!!

Oh, and put away and/or compost the Halloween decorations. I want to do that with Julia so she understands how we change seasons and holidays. She is very much into reciting the order of the holidays right now, including her birthday which comes after Thanksgiving and Christmas. I think her list of desired gifts is going to as long as any child born in the USA. She is understanding an awful lot.

Julia had a good morning today, a relatively good day yesterday, and really good sessions at her OT and speech therapist yesterday. I don't know whether to attribute her attention to the two games that she did with these therapists to the drug or whether she was just in a good mood. The bad days of a few weeks ago are almost gone, and her speech is much more fluent again. She was able to tell me yesterday that she did not want to go to speech because she was scared -- her therapist there is new. She is also continuing to try to read whenever appropriate which is really so great. She did seem a bit tired at speech yesterday but she was zinging off the wall around bedtime. She is sleeping well as usual and is always ready to wake up. One effect of this drug is sleepiness. So far we are not seeing it interfering with her days, and it would be a good thing if Julia could relax before bed.

We start the full dose of medication on Thursday -- .5 mg twice a day.