07 March 2011

I changed the design because it was time. Before last year, I would change the blog design every few months, and had a good time playing with digital scrap booking for pictures as well. Certainly, I had no intention of keeping the last layout for so long, but it seemed to fit with the last year. I also love those pictures of Julia. And then, who had the time. Or the inclination. And with my new laptop coming just a handful of weeks before David's transplant, I have had no time or energy to re-learn photoshop.

Then, this weekend, I just needed the change.

A few Julia things before I fade away into self indulgence. I got an email from school today about Julia's behavior. It think this is the second alert that I've gotten this year, which is a miracle in itself. But the message today was the Julia was unable to do her work in the classroom because she was angry and being disruptive. It was not a tantrum or a meltdown but when asked to calm down in the hall she went limp and sat on the floor instead of listening.

So, mother guilt flooded in and I know I have been making more demands on Julia at home -- putting silver ware away after we run the dishwasher, making her dress her self and get ready for bed. And consequences, mostly of losing toys to the top of the frig for a few days, when she does not listen and respond. This may not seem like much and is awfully age appropriate, but it is new for Julia.

And we are losing our lead therapist as well after next week. The transition is going well but it is hard to have someone leave our lives, and lord knows, Debby, who has been our lead since we started intensive therapy, has been grafted into the family in lots of ways.

I went into school just before the end of school and met with Julia and Deb, the special ed teacher who works with Julia a number of times a day. Julia was all apologies and very willing to say she was wrong. I am looking for understanding. I think we will get there, but I am a bit stymied as to what to do. Cutting back on some of my demands is first.

Two steps forward . . .

When I came into school before the bell and could watch a bit of Julia in gym. Right now, they are doing a unit on dance using one of the computer dance games. Julia participates at times, but when I saw her, she was standing on the foot mat, not paying attention at all, and picking at her fingers. Her aide was standing nearby but not interrupting the behavior.

I know that an aide cannot constantly be in Julia's face and I don't mean that I constantly check on her, stimulate her, helicopter over her when she is home, but I felt a jolt of electricity run through me. Julia still has so many needs. If she is compliant, she can fell through the cracks and get pushed along. No one, really no one at all, is doing that right now, but I can see how it would happen.

And for a minute, I wonder about homeschooling. Then again, after two years of running PTO and doing very, very little of in school work, I am ready to go back to trenches volunteering. In the classroom, in the hall, in the lunchroom, in the library. To help Julia connect, to remind her to connect, to keep others aware of her needs.

Now to change the pace -- yesterday, Julia and one of her therapists made tissue paper flowers and hung them in an archway. When they finished and hung them, Julia couldn't wait for me to come downstairs and see their handiwork. Her excitement about sharing her new decorations was intense. She wanted to know which was my favorite, and was wild about this sign of spring.
Also, Julia reading grows every day. I am amazed at the words she is remembering. And she is comprehending better and better when she reads. Tonight, as we watched the beginning of Ponya, she wanted to know what all the beginning titles said. And recognized a few words herself.

I feel good after writing all of this. Worried to be sure, but seeing my own record of progress. For myself, I am struggling holding on to the last few months as PTO president. My ego is becoming a bit bruised as the new administration seems more than eager to take over. I love this, but at the same time, . . . hell, I am human.

The less than adequate presentation of last week still stings. I am wondering whether to let the Florida conference folks know that I'd rather not present. I have a feeling they have more than an adequate number of presenters to fill the time. But this does let go of one of my LEND goals.

My neat tax refund that I was so happy about disappeared today when a very late form from one of my investments came in. The amendment will be fine, but no refund.

I am living in last year's times. I looked back today again, to see what was happening last year at this time. I feel measures of pride and pity -- I did try my best to share and process and keep myself sane. Reading the words and the spaces between them -- oh, it was so hard. We/ I was so determined to get through. I realize too something that I had forgotten, that until David got sick in Julia with the gall bladder infections, I had no intention of giving up. That last week, I was so scared and almost sure at time that we would lose him, I lost so much of our optimism, our fight. And that is what I have been left with after he died.

Looking at the posts from last year at this time, I can read them without tears today. I can just see where I was. I can understand again and for the first time, the process.

I can see how someone going through this process of loss and healing could grow to be wise in more of life. I hope that is the path that I am on. Surely someone could benefit from my becoming wise. Surely this wisdom of which I speak has value.

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