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Apr 12

Spring Updates – 2022

Marc got a company car a few weeks ago, and it’s delightful. I assume, because I’ve somehow never actually gotten into the car. He uses it for work, pretty much exclusively, because if we go anywhere as a family, we go in my car. But this means we also have his old car, and we’re sort of hanging onto it, in hopes that Jessie is going to get her license and start driving it. Jessie isn’t super motivated, because she’s on campus, but I think that’s the long-term plan for this summer and next year. She’s got a fellowship this summer, in addition to working at the JCC, so her being able to drive herself would be helpful.

Julianna got accepted to the Hanover Academy at Bancroft yesterday afternoon. It’s based on test scores and is academically advanced, with a focus on arts. I’m really, really happy she’s going to be going there, I don’t entirely love her elementary school. She’s made some great friends, and connected with some of her teachers in ways that I don’t think she ever did at Flagg, but I don’t love it. And I didn’t love Sullivan for Jessie. Jessie was in a separate academy, but from everything I saw at Sullivan, it wasn’t great. Too big. Hanover is a smaller academy, more personal attention, more art classes, etc. Definitely the right move for her. She’s starting her bat mitzvah training this summer, so there’s a whole lot of new things coming up for her.

Sam’s got his IEP meeting this week – and this week is a blur of different meetings with various team members. It’s complicated, and his path has been so convoluted. Now we’re dealing with the fact that he’s got serious spelling deficiencies that have been brushed aside for years, and only really coming to light now that he’s learning braille and quadratic equations. The quadratic equations don’t really highlight the spelling – but they do highlight the importance of him learning braille because of the gaps in his field of vision. We’re getting closer to figuring out how to deal with his cyclic vomiting syndrome, and experimenting with meds to get the right dosage. He’s SO much better – and what I’m realizing is that the anxiety was really triggered by the uncertainty around not being able to predict when or where he’d be throwing up. Feeling awful 98% of the time will make you less likely to feel safe out in the world.
My days are a blur of academics and meetings and stress lately, but I feel like we’re on the right path to health (physical and mental) and academic success.

Feb 13

20 years

I remember the way he looked when we first met. I remember everything about our first date.

I remember his face when I told him I was pregnant. How he told me he loved me and I thought he was crazy. I remember the chocolate ice cream we were eating when he first told me he wanted to marry me. I remember when he told me that we would try again, right away, after we lost the twins. How lost I was when he wasn’t with me that first year.

I remember when Jessie was born, how tiny she looked in his arms. The way he’d swaddle her so carefully, taking her from my arms after I nursed her and then tricking her into falling asleep. I remember telling him when I was pregnant with Sam, and how he kept repeating “it’s a boy, it’s a boy” after he was born. How Sam would cry and cry and Marc didn’t care at all. He was, and is, Sam’s first hero. I remember when I found out I was pregnant with Julianna, how we didn’t tell anyone for that first few days, like it was this incredible secret that we had together. He put her to sleep every night and shared breakfast with her. She was Daddy’s girl from the start.

There are other, harder, memories. The accident and the aftermath. Everything about that time in our lives was hard, but he was right there, all the time. A lot of couples break up when you go through something like that – but trauma brought us closer. Not closer – because we were already so much of a unit. But the strength of that unit was enough.

We’ve sent three girls off to college, gotten one kid through some massive trauma on every level possible – physical, emotional, illness and injury. We’ve survived covid quarantine, multiple job losses, five or six cars, seven apartments, two dogs, six fish and one wiggly hamster. Everything about my life is more than I ever thought possible, and I’m never not grateful for him. Everything I love starts with him.

Happy 20th anniversary. I can’t wait to see what the next 20 brings.

Feb 10

None of us know what we’re doing

Or at least, I know I have no idea.

There’s a woman I know, not well, but we’ve been casual aquaintances for several years. She’s been to our house a few times, I’ve given her kids rides a few times, but we don’t really know each other well. Every time I see her, she tells me that Marc and I are fantastic parents, our kids are wonderful, brilliant, kind, everything is successful. I’m so calm and so peaceful, and such a good parent.

I’ve tried telling her that it’s not true. That parenting is hard, it’s impossible, really. We have no idea what we’re doing, almost all the time. The fact that our kids appear to be perfect belies the reality that nobody is perfect.

Sam has abdominal migraines. And an anxiety disorder, and severe allergies, a traumatic brain injury and he’s blind. I don’t have the foggiest idea what I’m doing most of the time, when it comes to figuring out if the vomiting is coming from the migraines, the allergies, or the anxiety. Really. I don’t know. Ever. I guess, and I think I’m right about 75% of the time, but I could be completely wrong.

Today is one such example. There are a lot of moving pieces that are suddenly falling into place for him, things I’ve been trying to get into place for years. And in the space of a month, this kid went from an incredibly unscheduled laid back situation to one in which he’s got stuff going on almost every day, and often several things piggy backing on top of each other.

Is that why he’s vomiting? Maybe. The vomiting does seem to coincide with activities – but he’s got a lot of activities, and fear around throwing up and not being able to run to the bathroom right outside his bedroom could be contributing to it. Is that anxiety? Or anxiety because of the abdominal migraines?

Really, I don’t know.

I never know. I look back at when Jessie was younger, because she’s much closer to officially “launched” and can see things I did right. But mostly, I see things I did wrong. I wish I had insisted on wheat bread, even though I hate it. I wasn’t firm on bedtimes and never made them sleep in their own beds. The house is always cluttered, I never matched socks, and there were many nights when I put them to bed by promising ice cream for breakfast.

We never know. Because in the end, parenting is just another relationship. And while there’s clearly more responsibility on one side than the other, it’s also about learning how to get along with someone you love more than anything. How to provide structure and love and still acknowledge autonomy and independence. How to make them know they aren’t responsible for your feelings, but they are responsible for their actions. We’re all just hoping that we’re doing the right thing. And never actually knowing if we are.

Jan 31

Turning 48

My birthday was last week. And mostly – I ignored it. I ignored it because it scares me, a little bit, to be getting older. I’m not at all sure how I feel about it, so I’m pretending it’s not real. I don’t FEEL older. But there’s no way to deny that 48 is really close to 50. And 50 – well, that’s old.

I mean, it’s not OLD. I’ll be 50 with a child who isn’t yet in high school. I’m still young if I’ve got a kid too young for high school, right?

But I should be embracing my age. I should be feeling good about this – not everyone gets 50 years. Not everyone gets what I have, a good, healthy marriage. Five healthy kids, who are all thriving. A scruffy dog who barks too much. I love my life.

I’ve thought about life goals, resolutions. I used to make birthday resolutions. When did I stop doing that? Was it Sam’s accident? I think somewhere along the line I started thinking setting goals was too much, survival was taking all that I had. And it’s hard, now, to think of personal goals I want to make. Everything comes back to kids – I want to continue supporting Jessie into adulthood, providing the scaffolding she needs, and gradually stepping back more and more, letting the scaffolding go because she doesn’t need it anymore. I want to start treating Sam as an adult, pushing and nudging and getting him to see himself as capable of doing it on his own. To make his own goals, to work towards what he wants. I want to continue to build my relationship with Julie as a stand alone thing – to be there for every last second of her childhood. To soak up all that I can, because I don’t have that much more time with her. I don’t have that much more time as a parent of children at home.

What do I want? Outside of parenting, outside of being a better wife, a more dedicated pet owner (because I really do need to get her groomed). What do I want, for me?

I guess that should be my resolution. To try and figure out who I am, outside of these definitions. The problem is that my obligations, as a parent, still seem so… huge. So big and so important, it’s hard to know where that ends and where I begin. So much of my identity is tied up in parenting. And it grows and changes, I am not the mom of babies, I’m not the mom of a zillion little kids hanging out at the Ecotarium anymore. But the mom of a college student, an elementary school student, the mom of a disabled high school freshman who needs to fight for every accomodation – that takes up a lot of space. So much space, I’m not sure there’s room for much else.

Parenting is such a guge part of my identity. I’ve been very purposeful about that. I did this intentionally. And I’m sure, as they all continue to grow and need me less, I’ll find space for me again. But we aren’t there yet. Sam still needs a lot. Julie is still a kid. And while Jessie is super close to an adult, she’s still learning and figuring it out. I’m okay with where I am. More than that, I want to be where I am. I don’t want to miss a moment of what I have left with them.

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.

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