First of all, I want to reach out to all of you with kids or someone else you love similar to Janey. I hope you are all hanging in there, and I very much hope that none of you have caught the awful virus.
How are things here? Well, mostly okay. Better than I thought they would be a few weeks ago. Janey had a terrible time adjusting to school being closed. For a few weeks, she cried almost all day every day, screamed a great deal, bit her arm, just was not happy at all. And then, fairly suddenly, she seemed to get used to the new normal. It was so wonderful to see her smiling again, and dancing around, and seeming to enjoy life.
The new normal does have some hard parts. One is sleep. Janey's teacher has told me a lot of kids in her class are having trouble with sleep. Janey seems to have chosen a random sleep schedule. She'll be up a lot of the night, sleep a lot of the day, then sleep a night and be up a day, and then have a day with long naps and a night with long anti-naps, awake periods. It's tiring for all of us. But often now at night, she'll watch videos or YouTube and require little help from us, so we can catnap much more than we ever used to be able to.
Janey also, like a lot of us, wants to do things she can't do. We are being very, very, very careful about social distancing. Tony and I know that catching the virus could be extremely serious for either of us, with his quite severe diabetes and my collection of issues. We want to avoid it at all costs. So we haven't been to any stores, we haven't gone to drive-thrus, we leave the house only for car rides to no-where. Janey enjoys these rides, but often asks to go to the grocery store or get McDonalds, things she loves doing especially with Tony. She is accepting no as an answer more than we would have thought, but she isn't happy about the nos.
We are doing some Zoom sessions with Janey's teacher and will start doing some with her therapists, too. Janey isn't too bad with the Zoom learning. She does about 15 minutes worth without asking to stop, thanks to her teacher's creative ideas. Mostly, though, Janey's kind of school activities just don't translate to homeschooling. And we are okay with that. I think often how hard it would be if Janey were in a college prep type situation. We can let this be a time of vocational learning. Janey is helping me with the laundry, helping me vacuum, helping Tony cook, things like that.
My own stress has increased while Janey's has decreased, however. I'm an introvert who can happily go weeks without leaving the house much, so that part is okay, but it's the everyday things in life that are getting harder and harder that keep me up nights. At first, we were able to order groceries online for delivery. Now, it's impossible to get a delivery slot, even if I stay up until midnight and try to get a time as a new day opens up. At some point, we will have to shop. That is going to be scary. Boston is one of the most affected areas in the US, and our particular neighborhood is one of the most affected in the city.
Today, it was very windy, and a tree landed on the wires that provide us with our landlines, cable and internet. We are lucky that we have a backup internet, much slower but still use-able. But somehow losing the landlines and cable scared me. I tried, as did the neighbors, to call Verizon over and over, and it's impossible to get a live person, and for their own reasons, you can't report a down line on-line. You have to talk to someone live. I have no idea when they will be able to fix the wires. I keep telling myself we are fine without them, but somehow this storm and wind and outages seemed like the straw that broke the camel's back for me in terms of stress. Which I keep telling myself is very silly and selfish, as we are not sick and so many people have it so much harder. I think, though, that we live with a base level of stress that never quite goes away, and when even a small amount gets added on, it's hard.
If I get even more self-analytical, I think I'm terrified by how quickly it feels like it all can fall apart---schools closed, hospitals overwhelmed, food shortages, the economy tanking, the ever-present feel of sickness. And throughout history, when things fall apart, it's the most vulnerable among us, people like Janey, that often suffer. Like many others, I read about how ventilators might be rationed, and how one of the criteria items to be considered was "mental retardation" That gave me some nightmares. But even on a less dire level, when budgets get tight, special education often seems to be cut first. More than most, Janey needs a society that cares about all, that provides for all, that sees all lives as valuable.
Someday, this time will be over. I keep thinking of that WWII song "They'll Be Bluebirds Over The White Cliffs of Dover, Tomorrow,Just You Wait and See" They'll be school again, grocery stores you can shop at without fear again, news other than the scary lists of new cases and lives lost. We'll get through this. I am thinking of all of you, and sending you love, and I will close with what so many calls and letters close with lately---be well.