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Jan 13

We all have covid

Julie and Marc are the only one we have test results for, but I expect to get Sam and Jessie’s today or tomorrow, and I’m on the phone arranging my test now.

We’re okay. Julie’s mostly through the worst of it now, and feels basically okay. It’s hard to figure out how to count quarantine days, because everyone has a different way of doing it (and 22 months into this thing, it seems weird that we don’t have any clear directions). According to the Board of Health, you start counting (at Day 0) on the first day of symptoms, and then quarantine until Day 6. I think Julie is on Day 5 (started last Saturday), Sam is on Day 3, Jessie is on Day 1, Marc is on Day 1, and I’m on Day 0. Which means I quarantine through Tuesday. Julie’s technically good to go tomorrow, Sam is good for Monday, Jessie and Marc on Tuesday and I’m free on Wednesday. After that, as long as your symptoms are improving, and you are wearing a good mask, you can grocery shop, go to school, the library, etc.

There’s really nothing to like about this. I don’t feel great – I mean, I don’t feel tremendously ill either. But I’m coughing and quarantining and it’s frustrating. There’s this overwhelming worry – because I’ve spent close to two years hearing about how fatal this is, watching my mother deal with long-haul covid, and it’s scary. But so far, we’re riding through it. It’s like a really bad cold and the hard part is that we all have it all at once.

Jan 11

Overwhelmed

I’m feeling especially stressed and overwhelmed right now. We’re coming down to the end of Sam’s semester and I’m looking at a biology test that looks awful to me. I did not thrive in high school biology. And because I’m the one translating all this to him because he can’t see it, if I don’t know the answer, I assume that he doesn’t either. We’re moving towards getting him independent and on his own, and I’d love to not feel responsible for his grades, but we aren’t there yet.

Julie is sick. She was exposed to covid and tested negative last week, but started showing symptoms last Saturday. We’re still waiting for covid test results from yesterday’s test, and hoping like hell that nobody else starts showing any symptoms. Jessie is working with toddlers, and terrified of getting sick.

Sam is throwing up. Again. I feel like Sisyphus, constantly pushing the rock up the mountain, thinking I’ve got it, and then it rolls back down and I have to start all over again. He’s been sick since mid-November, and I don’t know why. He’s been on two antibiotics, and maybe is starting another cold again – but it’s constant sore throat, stuffiness, and vomiting. I’m frustrated and helpless and afraid I’m going to get on the zoom appt and just start sobbing because there are no answers ever, and I can’t figure out how to get him healthy.

Jan 09

It feels like March 2020

This is not where I thought we’d be in January of 2022. But it’s not altogether bad either.

The omicron variant of the virus is running rampant, and we may or may not have it. We can’t get tested, so there’s no way to know, either way. Julie’s sick, sore throat, cough, some congestion. Becky and Abby are still at home, quarantining because they tested positive a week ago. In theory, we could have been exposed from them, but the tests are few and far betweeen. We managed to test Jules last Wednesday, and in theory, she was negative. At least, we didn’t hear otherwise, and now so many people are getting tested, we operate on the no news is good news. We’ll get a call if it’s positive.

Everyone is healthy – except for Julie. Who was fine, and in theory, she was negative last week. But rumors are circulating that a kid in her math class may have tested positive, so maybe she was exposed again? I can’t get through to her pediatrician’s office, but it’s Sunday. And what are they going to do? They were testing out a week in advance, so possibly I can get it though the school?

But it doesn’t feel safe going anywhere or doing anything. Because even if we are all negative, we could get exposed so easily. So we’re home. As we were yesterday, and the day before, and the day before that. Jessie is still going to work, Marc is still going to work. Julie was still going to school. Sam and I don’t really do that much, braille lessons, trips to the library and grocery store. We bought new masks, K94, which are supposed to be so much better than all the pretty masks I bought over the past two years. We go nowhere we don’t have to – and eye everyone suspiciously from behind our masks.

We’re watching movies and crocheting, reading and baking. And worrying about Julie. She’s not hard core sick, sore throat, stuffy, coughing. Not something I’d think twice about two years ago. But now? I don’t know if she’s got covid. She shouldn’t. She’s vaccinated, and wears her mask diligently. Do I keep her home tomorrow? And try and find a test somewhere? Or skip the test, and just keep her home until Thursday (because that would be Day 5 after she started showing symptoms)? Do I have a choice? I legitimately might not be able to get her tested.

Not where I expected to be, in January of 2022.

Jan 03

I’ve become “that mom”

I literally just wrote an email, explaining that Sam would need to do test corrections or have the test dropped altogether, because WE ARE NOT going to let that 65% stand as his final test grade.

I used to be the mom who was devil may care about grades. Jessie stressed so much about her grades, I was momumentally laissez faire about it. I made a point of assuring her that her grades were fine, no matter what. I didn’t pay attention to them at all – in fact, I actively encouraged her to care less. And with Julie, I’m walking a fine line between paying attention and caring, but assuring her that doing her best is what matters. I don’t care about the final grade, I care that she did her best. Which, of course, I do. I truly don’t care about the grade. I mean, I know I’m coming at that from a point of priviledge with the girls. They are intellectually bright, diligent and conscientious. They get good grades.

The problem is that Sam’s grades aren’t actually about what he did. It’s not. It doesn’t particularly matter how hard he tries, he’s still blind. And that 65% isn’t a measure of what he knows, it’s a measure of what he understands because they have failed to make it accessible for him. He is a solid A/B honors level student, but math is a battle. Because when you can’t see a graph, or a lengthy equation, it’s really hard to be able to do it. Not that he doesn’t know how, it’s just a hell of a lot harder to get it done when you can’t see it.

And so I micromanage his grades. I’ve become every teacher’s worst nightmare, I know it, and I’m even sorry about it. This isn’t where I want to be. This isn’t where I think I should be – at 15, he should be in charge of his own grades. At 11, I don’t micromanage Julie’s grades. The difference is that every lesson is designed for sighted students, so if Julie is getting a C in science, it’s because she’s earned a C. Sam deserves that same level of access.

Dec 29

IEP troubles

IEP’s are, by definition, impossible. I mean, the first time I heard of an IEP, I thought it sounded fantastic. An individualized education plan? Where professionals consider your child, modify lessons and design curriculum to suit your child’s individual learning style? SIGN ME UP.

So stupid.

Because it actually sucks. Your child only gets an IEP when they can’t learn without one. Taking that sentence apart – your child will only get this service when they can’t learn without one. So in order to get one, you have to prove that your kid can’t learn without it. This is less of a hurdle than you might imagine when your kid is legally blind. But once you get an IEP, there’s no guarantee that you’ll actually receive the services promised in the document. No guarantee at all. And “we’re doing our best” is a perfectly logical response when you ask why.

Then if you add in a global pandemic, and a kid who’s legitimately got a variety of health concerns, including a traumatic brain injury, legal blindness, a diagnosed anxiety disorder, and a rare manifestation of migraines combined with a tendency towards a waterfall of postnasal drip anytime the pollen count rises or a virus strikes – well, then, your full time job is going to be begging educational professionals to give your child the education they are legally entitled to receive. When he’s healthy enough to receive them.

Dec 28

Everything changes

One theme I’ve been thinking about lately is that of change. There have been so many times in my life when I was so happy – when I really loved everything about what I was doing, and where everyone was, and… it changed. I loved a lot of my twenties – living with Becky, having a job that was fun, and being independent and on my own. I loved having Scott’s kids all the time, I loved the relationships I had. In order to get to the next step – all of that had to change.

And of course, having kids has been one change after another. It’s not just having a newborn, an infant, a baby, a toddler. It’s not just having one kid and then two, then three. All of those were such huge changes, and they all came with loss. In order to have the next step, you have to lose what you have.

That was what was so hard about having Jessie go off to college this year. Once she left, it was okay. I love where I am now. I love having Julie and Sam at home, and suddenly having a house of big kids. But anticipating the loss was devastating. I was so afraid of what it would be like without her, so aware that I was losing that time of having my daughter living with me as my child.

She’s back now, for holiday break. It’s lovely and familiar and everything feels the same, but I know it’s not. She’s an adult now. Not entirely, but more now than ever before. I’m not in charge of her life, her emotional stability. It’s hers now, and it feels… exactly the way it should be. I didn’t anticipate that. I thought it would feel awful, that I’d miss being in charge of every aspect of her life. But I don’t. I love who she is, I love watching her navigate her life. I love having her home, but I know she’s going back to college soon, and it feels right.

The theme of change extends to how I parent the other kids as well. I know now, in a way I couldn’t have known before, that it’s going to change. Sam’s 15, and I can see the end of this stage for him. I’m not rushing it, he’s got a ways to go before it happens, but it’s going to come. And with Julie – God, I’m so grateful for her. Grateful for more time, to be able to experience all of this one more time with her. Because I know now how fast it’ll go.

And as much as I can tell myself that I’m totally fine with my kids growing up, and I can even totally believe it, once it happens – the thought of Sam and Julie leaving to go to college makes my heart sink. It’s going to be just as awful, that year before, when they go, one at a time, as it was when Jessie went. But I can hopefully remember that it won’t hurt nearly as much once they’re off and happy. Because everything changes, and it has to, to make way for what comes next.

Nov 18

The Pledge

Somewhere along the line, Julianna stopped standing for the pledge of allegiance. I’m not sure when, but it probably happened during covid. I don’t know that she did it at Flagg Street. But she doesn’t stand in class for the pledge of allegiance now.

Julie, at Gates Lane, is a different kid in a lot of ways. More independent, more certain about what she wants and how to achieve it. She’s stronger. She’s seen some things, so to speak. And quite honestly, she resents standing to affirm her loyalty to a country that does not, in her opinion, stand for liberty and justice for all. While she believes in God, she’s aware that not everyone does, and also resents the exclusionary aspect of it. Not everyone believes in one country, under God.

So she doesn’t stand. Her homeroom teacher, this year, doesn’t appear to be all that hot and bothered by it, but her substitute yesterday does. The sub made a big deal about it – first yelling at the girls in the back row to stand, and when Julie still didn’t, she slammed her hands down on her desk and demanded that Julie stand up. Julie, who was quietly reading Anne of the Island, rolled her eyes and stood up, making it clear that she was continuing to read her book.

I checked with her teacher today, and verified that she does not, in fact, have to stand. And got assurance that her substitute teacher would be informed of that.

But it points to a larger issue, and it’s one that I’m recognizing more and more. My little Julie isn’t so little anymore. She’s got strongly formed, independent opinions, and is willing to stand up for them. Also – she’s nowhere near as afraid of teachers or other people in authority as she used to be. Julie doesn’t screw around. She’s tough and strong, and while I’d rather she not be rolling her eyes at her teachers, I’m not altogether unhappy that she did. The teacher was wrong – she was trying to intimidate Julie into some sort of performative patriotism, and Julie wasn’t having it.

Oct 11

One month in

It’s more like a month and a week, but being on time has never been a strong point for me.

Julianna bounced into school like a duck to water. It’s a good metaphor, because a duck legit needs water and is happiest there, and truly, that’s what it feels like. She’s in her best place. Even though I’m not completely confident that Gates Lane is the best elementary school in the city, I will say that her teachers are committed and involved, and after the first few weeks, they bumped her up to the upper level math and ELA classes. She’s made friends quickly, loves her art classes, is adjusting beautifully. There was nothing about covid isolation that was positive for her, although I selfishly loved having her home with me. But she loves being at school, and I love how much lighter and more content she seems to be.

Jessie is also thriving. It was a rough month. It just was – moving out was hard. But she did all the right things, and soldiered through the misery and it’s starting to get good for her. She loves her classes, loves her clubs and is starting to feel like it’s home. I miss her, terribly. I mean, it’s this constant ache that I’m slowly adjusting to – but it never goes away. She came home for a night this weekend, and I missed her so much after she went back – it was awful. I know she’s where she belongs, and honestly, I was so focused on making sure that she was okay, I didn’t really have time to miss her. Now that she’s settling in – now I miss her. It’s hard.

Sam – Sam is growing up suddenly so quickly. It’s like he was on hold from the time he was nine, and suddenly went through the past five years in the past five weeks. He’s nine feet tall, wearing real pants, taking the bus, learning braille and in high school. He’s in high school. There’s still so much that I feel like we need to do for him to go to college, and I’m entering into that overdrive stage where I feel like I have to fight all the time to get the aid that he deserves. The problem is that there’s no clear agreement on what he needs. Does he need braille or more independence training? Is TECCA even accessible for him? Has anyone ordered his equipment? I don’t know any of the answers, and nobody else does either. I’m just shouting into the void, hoping for guidance and help. I rarely get it. But sometimes I do, and it’s like patching together an educational plan for him. His grades are great – but that’s apparently part of why it’s so hard to get the services he needs. But I can’t let him fail, because he wants college, and high school grades matter.

Marc is working. And doing security for BI religious services, DM-ing D&D games, going to the gym. He fills his days with obligations and commitments, and I think he’s happy. At least, I don’t know that there’s much he’s able to change. Or wants to – which is really the point. We still try to find time together, and talk four or five times a day – but this is a busy time for us.

I’m starting to see a therapist tomorrow. Not really because I wanted to – but because Sam’s therapist said I was insane to NOT be in therapy. That having a kid who was dealing with all the stuff that Sam is dealing with and not having someone to talk to about it was not okay. And while I’m great at recognizing when my kids need help, and making sure they get it, I’m less effective at seeing when I need help. I’m not at all sure that I would have gotten myself a therapist at all, except that Caitlin, Sam’s therapist, who has been there through everything, said that we need to really push hard over the next few years to get Sam where he need to be, and that I needed to be talking to someone for support as I’m shoving my son out into the world. Then she called around, and sent me the names and numbers of therapists who both take my insurance and have no waiting list.

Sep 22

3 weeks

It’s been three weeks since Jessie moved to Wellesley, and we’re adjusting. Four weeks since Julianna started back in public school, and she’s thriving. Less than a week since Sam started braille, and he’s oddly proficient for a kid who had three months of braille instruction three years ago.

Because the Jewish holidays happened so early this year, Julie’s missed three days of school within the first two weeks. Despite not being there all that often, she still got sick almost immediately. We’ve covid tested her twice so far, and it’s not covid, but it’s a bad cold. And since we’ve all been in covid isolation since March 13, 2021 – we all got sick. She was hard core sick for the better part of a week, and is getting better, but Marc and Sam are right in the throes of it now. Both of them get really gross head colds – and they’re both kind of gross right now. I’m barely starting, and hoping that if I get a good night’s sleep tonight, I’ll be all better tomorrow.

Other than the cold, I have to say that Julie going back to school is an absolute positive. She’s Julie again – she chatters with me in the car, walking me through every part of her day. She’s smiling and laughing more, making friends and feeling comfortable and relaxed. I’ve got my baby back again. Covid isolation was so horrible for her. And two years into it, she’s a different kid than she was. She’s more serious, more thoughtful. More introspective and more… aware of everything. But she hasn’t lost that joy and that sense of fun. I wish I could have given this to her last year – but if I’d had any control over anything, things would be a lot different.

With my Sammy – oh, man, that’s still such a battle. We finally found a braille instructor/TVI, but she can only commit to about half the time that he’s supposed to be getting under his IEP. So I’m still functioning as a woefully inadequate TVI, but now he’s learning braille again, and feeling more empowered and capable. I arranged to have the sessions down at the WPL, only partly because this way I get to go to the library three times a week. But mostly it was about having him out of the house, forming a relationship with a teacher that doesn’t involve being at home. He’s not agoraphobic, at least, I don’t think so. Not in the traditional sense. But he does have some serious anxiety issues, and he also has been at home for a year and a half because of covid, has photophobia so going out in the day time is potentially painful, and is doing online schooling. So even if he isn’t technically agoraphobic, it feels like he is functionally. I jump at any opportunity to get him out of the house and with other people.

Aug 19

I’ve felt this way before

I was sitting this morning, thinking my thoughts, and realizing that I have felt like this before. It’s not precisely the same, but the closest I can come is when you’re eight and a half months pregnant. Not there yet, but on the precipice of everything changing, and being in a new place. Everything is going to be different, in a just a little while, and you both can’t wait for the changes and are a little bit terrified of what it’s going to be like.

I’m ready for her to go to college. I’m ready for this next stage, with just Sam and Julie. Sam moving into the oldest role at home, and Julie monopolizing that “going to school” role. I’m ready for the idea of stepping back the mothering role with Jessie, for letting her take over everything. But I’m also a little wistful about how lovely it’s been, this getting ready stage.

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