I make resolutions. I have know people who have not approved of this habit, some pretty vocally. And I still do it. I like setting goals and I am not undone failing to reach them. I’ve lived in Julia’s therapy world for a long time and when she does not meet a therapy goal set within the prescribed time, it is either carried on or modified. So too, my resolutions. Certainly, the resolution to consider or contemplate home which has been on my resolution list long before I began posting resolutions is a perfect example. From the time I left NYC for the midwest, I’ve puzzled over the idea of home. NYC was home. Now, the pieces fit. Home is simply where the love is—family and friends and warm community. Madison has been home, first because it was where David and I lived together and then because I was determined to reclaim life and be a part of the community. Of course, I’ve known this intuitively for a long time—such a Dorothy moment. And these days, my eyes are fixed on Boston as home, a home as precious and satisfying as Madison has been. Continue reading
Yesterday’s solstice. The days are gray, almost dark enough to need lights in the house all day. By 3:45, artificial light is mandatory and by 4:30 the sun set. I put on out window, porch and tree lights for the night and left them on until the morning. I want to be part of the calling in the light. Continue reading
It was cold last night, only a few degrees colder than it was the night before. At least, I think so. And the thermostat was not set particularly low. But we shivered through supper and homework. Julia had had a moderately challenging day—she was late for study hall, her stomach hurt during reading and she still couldn’t present her earth science project due to some IT problem with her powerpoint. She had math and earth science homework and a Death of a Salesman test to study for, and it was admittedly harder than usual to catch her attention. Once she was working, she was fine, though her processing speed slowed to a half crawl at times. But we got through it all. She was incredibly tired which has become the new normal more than half her days. I’m not sure if it is that without the ADHD meds, her body runs down sooner, or that she is exhausted from working harder to concentrate on any form of work throughout the day, or something else. Continue reading
Not a wave, not everything I wanted, but a check and possibility a balance and a call to accountability by at least one house of Congress. Possibilities that did not exist yesterday. It is politics and you never get everything you want. In 2016, there was nothing for me. Today, Julia is over joyed that Scott Walker is out—8 years, or is it 28, of union busting, gutting Wisconsin schools and selling the state to the highest bidder could possibly stop. It saddens me to see how much of the country is still red in the worst way. Not the conservatives of my youth (that I did not agree with but respected) but a racist, misogynist, white national basket of deplorables with leaders ready to lie and manipulate almost without reason and certainly for political expediency. Still, the deplorables and their leaders have ushered in a wave of opposition that has been depressed and despondent since 2016 and uninvolved for a good long time. Women and people of color have stepped up and I believe that they are here to stay. Brava! Bravo! Walking outside this morning, I felt Madison breath a sigh of relief—shoulders look a bit lower, music sounds a bit more vibrant, the cold air feels a bit cleaner. There is tittering in the coffee shop this morning and a shit-eating grin on my face.
Now to work.
State of my world:
Julia’s head scratching has not abated with the delousing and aftermath. She is losing hair and areas without hair are increasingly visible to the casual observer. I think she is doing most of her scratching at night before she goes to sleep and when she is alone in the bathroom. Anxiety, habit, stimming or something else? Years ago, the way she finally stopped scratching her skin was on a three-strike-and-she-was-sent-home-from-school program. It was radical and it worked. I don’t know right now how much scratching is going on at school — I’m checking. I don’t think that school staff would be willing to put such a discipline into effect. Of course, if it is mostly at night, that it wouldn’t work anyway. I am in full worry mode. We will visit our doctor next Tuesday and her shrink on Thursday. OT is working on it as well. Needless to say, I am without control.
I spoke with a local reporter yesterday about Shabazz High School and my experience last spring when Julia applied for admission and was first asked for an interview and then rejected before the interview took place. I talked about inconsistent messages and requirements, and apparent exclusion of kids with IEPs. I told him that just before school closed for the summer and we were about to travel, how I got a call that they were reconsidering everyone who had applied and was rejected. (I don’t remember if it was rejected without interview.) Julia couldn’t interview before traveling and when we returned home, I check out the requirements again. Julia had been summarily rejected for not doing grade level math. Neither the requirement for doing grade level math nor her math skills had changed. I decided not to put her through an interview. I acknowledged to the reporter that the school has been good for kids there and I didn’t want to jeopardize the school for those kids. And yet, what of kids like Julia? I am conflicted. Continue reading
After two reminder emails to my list of PTB (“Powers That Be”), Julia was picked up this morning in time to get to school on time. Her case manager texted me that her bus was on time and she was not marked late during first period. I’m holding out for a week before I ‘get off my high horse,’ as my grandma used to say.
However, just because nothing is ever sweet and easy—This morning we went to the door three minutes before her ride has been scheduled to find the bus waiting. I don’t quite know when it got there and I hadn’t received any word that she would be picked up sooner than her scheduled time. I really don’t mean to look a gift horse in the mouth (Barb, lots of horse idiots today!), but it felt that it was just a wee bit passive aggressive to reschedule the pick up without any word to me. Because the bus has been coming late, we have been going to the door just on time. If we had this morning, the bus would have probably left. I’ll swallow this complaint right here, because I know what response I would get. I’m not even going to add to my thank you that a schedule getting Julia to school on time should have been worked out before school started. Continue reading
It has taken the entire summer to get Julia journaling on paper. Previously and for a number of years, she journaled during the school year on her iPad. My aim for this summer was to get her to write and draw on a page and although there was a lot to write about and draw during our Australian travels, she was not always very happy about doing any of it. Finally, finally, finally, this week writing and drawing have been done with minimal reminders. Sometimes it is even choice work. Continue reading
Time is crazy. I’ve been chatting with Cheshire and some friends back home. I think it is last night. I look at the dates on this blog and they are not necessarily reflective of when I posted. Not exactly. I acknowledge how tied I am to clock and calendar. How would I do in a Star Trek universe? Jumping galaxies, condensing and expanding time. I’m overthinking. I am inclined to hold the time differences in my head—it doesn’t work. I write, I post, I text. I just hope I haven’t woken anyone up. Continue reading
It is Thursday and we’ve been out of internet range except for select minutes for days. I have many pictures to post from our incredible hikes in the outback, the center of Australia. There is no way they will upload on hotel internet but I will have access to better soon.
Today is the eighth anniversary of David’s death. I wrote what comes next earlier today.
I never understood the church year and as a kid I wondered why from year to year the stories did not change because some of the repetition bored me. Now I have my own liturgical year, March to July, transplant to expiration. I can relive it in an instant, scenes with vivid recall like yesterday, clearer than yesterday. Eight journeys around the sun so far. Those early ones when the best I could do was to find care for Julia while I allowed for a good long wallow in pain. Then, the years of Miyazaki movies and Chinese takeout. First just the two of us and then with friends (Bless them for their indulgence).Then sitting in piazza San Marco with gin and gelato and observing in NYC with Cheshire and Indian food. Today, waking up in a cold tent, cuddling with Julia for warmth under heavy blankets. Traveling the Australian outback with a group of people we didn’t know three days ago. Last night, arriving at a camp site not set up for us, we made up beds and cooked a noodle dinner together, eating so late that Julia’s eyes were closing. No way I could have imagined today eight years ago. No way could I have imagined the company we would keep this day. Grieving, observing, and one day, not quite yet, celebrating the years and the life I/we share with David. Continue reading
A line from one of my favorite songs (“Is Anybody There?”) in one of my favorite musicals (1776). It is running over and over in my head, the voice I hear is, of course, William Daniels, the original John Adams.
We leave for Sydney tomorrow evening. I have a list, albeit short, to accomplish and two therapy appointments today. If I finish what needs to be finished before the middle of the day, we could see a movie tonight but I am not depending on that extravagance. Continue reading