Trying to Breathe

Things will school are still mega-stressful. Basically at this point, we’re probably stuck with the aide he has, and it may not end up being a hugely bad thing because at this point, there is no conceivable way she doesn’t understand what needs to be done.

Which is not to say we’re not putting all our ducks in a row for levying medical neglect charges if something goes wrong, and putting together an absolutely bullet-proof IEP going forward. Because. The fact that his doctors are the ones saying “neglect” means I’m not just being a helicopter parent here.

A lot of other stuff came up too, largely amounting to “we’ve hit his limits” (physically, not academically or mentally), which is really disheartening in a lot of ways, even if it’s not surprising.

Gym class sucks and is fodder for future therapy anyways, amiright?

Top it all off with a major fight with a friend, and this week has been.


I need to breathe. I need to stop trying to DO and just BE. And I’m trying.

I’m trying to spend more time outside, because we’re having a rare and glorious fall. Temperatures low enough to make the foliage turn, but warm enough to still enjoy being outside. I’ve been chasing N around the field, finally not having to stay up his butt to keep him out of traffic.

I’ve been taking my camera out more for thing that aren’t my children, because with a camera in my hand I’m more likely to stop and really LOOK. Breathe. Notice.

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I don’t want all this stress to define everything. I don’t want to get so caught up in it that I miss everything else.

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Space has always fascinated me. The first time I truly became aware of it was when my dad took me into the backyard to see Haley’s comet. I just remember standing there, staring at it, amazed … and thinking I’d be dead before people saw it again. (80 sounds ancient to a child, after all.)

In high school we tramped out through dark woods to find a clearing to set up telescopes and see comets and stars. In college, I took astronomy to learn how to identify what I was seeing with some amount of reliability.

I wanted to be an astronaut. (Until I realized I was terrified of flying.)

I stayed up last night to watch the eclipse. To watch the moon slowly sink into shadow, only to become visible again when it was fully hidden. To marvel at all the stars that became visible once the reflected light from the moon was gone.

Kind of amazing, all the things that can be seen when you block out the distractions.

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The Long Long Road

A fellow mom in the schoolyard had a baby over the summer. The baby is now 2 months old ..

and bigger than D was on his first birthday.

It’s never not going to be a gut-punch to hear other baby’s statistics, but over time it’s largely become a source of pride. “Look at how far he’s come … how far we’ve come.” Today he hit 21 kg again. Today he racked up another centimeter in vertical growth. All good things.

Somehow, though, seeing that baby is hitting harder than usual, because the school – the place where my son is supposed to be safe and cared for (and that care backed up by a legally binding document) – is putting all our hard work at risk. What’s more, the staff member behind it has persisted in lying, and the administration is standing behind her despite the fact that they cannot deny she lied. In short, they’re basically saying it’s fine that she lied about something that directly impacts my son’s health.

Sometimes I feel like keeping him out of prek was a mistake. Maybe I should have marched over there on his 3rd birthday and let them evaluate him. Let them clean the vomit out of their carpets again, because at that point, he was puking 3-4 times a day on average, more on days when we left the house. (Shoes were a huge vomit trigger.) Let them stick to the strict every 2.5 hours feeding schedule. Let them catch his vomit, measure his vomit, and refeed his vomit, because we could not afford to lose the calories and electrolytes. Let them do it, just for a day or a week, to understand the depth of the problem.

He would not have thrived there. They would have failed him. I had no doubts then, and I have even fewer now. But perhaps, if they had seen just how sick he was, they would have an inkling of why we “helicopter” and “micromanage” things now. He didn’t get better by magic. There were no fairy godmothers or wish-granting genies. And he won’t stay well without continuing that hard work.

Calculating his calories is an on-going problem. Right now we’re actually trying to decrease them, which is a new problem, because his weight gain is exceeding his vertical growth at the same time his age is dictating a lower caloric need. When you have no hunger instinct to rely on, it’s a lot of math, a lot of weight checks, and a lot of trial and error until you hit on something that works.

And we’ll not even talk of trying to get him to eat. He’s started eating bagel pizzas now with cheese, which is an amazing step forward. We only successfully add one new food every 6 months or so. So now we have bagel pizzas and hot dogs that start to approach full-balanced-meal territory (that need to be supplemented with caloric milks and such).

It’s so damned hard.  It’s hard all the time. It’s hard to not be able to just drop him off at school or at a club or class and leave – because we can’t leave unless there’s an adult there who knows how to care for him. It’s hard to have to talk to the kids about the word “midget” and why it’s not nice or ok, and why they need to tell a grown up next time someone uses it in reference to D. It’s hard to hear that his friends have started calling him “Little D”. It’s hard to sort laundry and not be able to tell the difference between his clothes and his 4-years-younger brother’s.

But most of all, it’s hard to do this every single day because he needs me to do it every single day, and then have someone come along who feels like it doesn’t matter, or she can’t be bothered. To not have the power to immediate eliminate that person from his life, because no one else can be bothered to care, either.

I won’t stop, but at the moment it feels like an endless road with no hope, and no help.


The Night Before

My baby turns 4 tomorrow. I tucked in a 3 year old for the last time a little while ago, and that’s just that. Tomorrow, he’ll be 4.

Last week was a bitch of a week, and I expect this week to be much the same. But no matter how many hours I spent on the phone and composing emails and figuring out my legal options (ahem), I was NOT going to let them ruin my child’s birthday. So, somehow, I’m not sure how, I pulled it together.

The house got clean.

The cake got made, along with a few dozen cake balls.

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Pin the tail on the Angry Bird got tacked up on the wall, and the live-action Angry Bird Game structure got built in the yard.

And we had a party. A big old  lot of cake and ice cream and presents and games and laughing party.

That boy. Since the day he was born, he has made me laugh. Before him, I was missing something. I wasn’t happy. I wasn’t whole. And he came out and was put in my arms and there it was, the piece that had been missing.

He laughs with such joy. He bursts with energy and passion. He is intense and determined. There is no ok or halfway with him – it is 100% all the time.

He is my baby, and he is getting so big.


My Week

So, do you recall the other day when I said I was waiting for one more email before I let loose on a highly stressful situation?

Yes, well, the email came, defused the situation, and immediately things exploded into a giant ball of what-in-the-ever-loving-fuck.

You know how when you put your entire heart, soul and being into something? You lose sleep and devote endless hours and it is basically your life’s work and entire purpose for being?  You know how that feels?

And how it feels when someone comes along who tries to destroy it?

That is my week.


She will not win. She is weak, and she is stupid.  She doesn’t even begin to know what she is up against.

I would die for that boy. I would *kill* for that boy. Without blinking and without thought.

My mind is filled with single-focused rage.

That is my week.


She is not the first; she will not be the last. I will be his advocate until my last dying breath. I will teach him – all of them – to advocate for himself, because no one else will ever care as much as he does – as I do.

Trust is earned, not given freely. Trust, once broken, can never be fully restored.

There were already caused cracks. I was asked to live with it, patched together with glue and good will. Trust is now shattered, it’s pieces spread far by the wind. There can be no repairs, it is gone, irretrievable.

No one cares more than I do. You threaten my son, and I will not rest until I am assured you will never come near him again. I will eviscerate you.

That is my week.


Make it Stop

So, clearly, we all have telemarketing call issues. Why is it?  Does anyone actually fall for the scams, donate their money, or do anything other than hang the hell up?

A couple of weeks ago, I decided fuck it, and answered the phone in Spanish. It was Windows Microsoft Security.

I have a long sordid history with Windows Microsoft Security. Sometimes I hang up. Sometimes I play with them. Sometimes I lecture them.  Well, this one time, I was like “how do you sleep at night after scamming people all day” and the guy starts HITTING on me. All “what are you wearing” and “I’d sleep really nice with you” and .. uhhh.  Yeah. I hung up.

And he called BACK and was all “I want to come meet you” and … yeah. I called the police just to have it on file, because obviously with my phone number it’s not crazy that someone could find my address.

(Ahem. Have we ever spoke of one of my earliest internet experiences wherein a guy I was chatting with took it upon himself to track down my address on show up at my house?  Sidenote: I was in Boston and he was in Chicago.  Creeeepy. People do creepy-ass things.)

So anyhow. After that, I mostly stuck to hanging up, but Spanish is fun too, right?

So I’m all “no hablo, no hablo!” and he’s all “do you speak Spanish?” and I said “no comprendo!” and babbled some more stuff in Spanish which amounted to we don’t have socks in our house.  Right, I know. My Spanish is rusty.

But they haven’t called back since.

My other interesting call recently was from a pro-life committee. And while my views on abortion are complicated on a personal level, politically they are crystal clear – it’s not my business, it’s not your business, it’s a medical procedure and doesn’t belong in the legislature at all. So we had a nice chat in which she’s all “but the babies!” and I inquired about her adopted and foster children, and golly gee how DOES she find the time to call people with all the mothers she’s helping out with the children they didn’t abort? She oddly had no good response.

So you know, much fun being had.

What was your best telemarketer call?


Bullet Points

  • Every year around his birthday (next week!), N goes through a sleep regression. We’re on week 3. I may kill someone.
  • The fact that N is turning 4 means I haven’t had a period in 4 years – really, 4 years and 38 weeks since my last true period (vs. afterbirth bleeding). It’s really quite strange and I’m finding it increasingly difficult to relate to women who speak of their periods at all. Like, I honestly forget that other women my age (and older) still regularly have them.
  • We went apple picking this weekend, so in addition to my stress-induced fudge-making spree, there’s now homemade apple sauce and apple crisp in the kitchen, alongside the nearly-empty bag of cider donuts. I feel fat just typing that, but it’s delicious.
  • The stress is largely coming from school, because oh-my-fucking-head. They can’t seem to get it straight that my child is not autistic, and it’s not going to be beneficial to him to be lumped in with the autistic kids all the time. IEP means “individual” not “we only know autism!”. There’s a huge fight a-brewing. I’m waiting for one more email before I let loose.
  • This is not a rant against autistic kids and their needs. I’m really friendly with a couple of moms of the kids D’s getting put in with, and it’s a major tight rope to walk with them to express my frustration without it coming out as being against their kids.
  • I’ve started answering all telemarking calls in Spanish. The number of calls has been dropping off. It’s rather satisfying.
  • My SIL never fails to piss me off, and unfortunately we’re coming up on a month-long string of family events. I may need to make more fudge.
  • With her last phone call, I was informed how “irregular” her periods have been since the miscarriage (again – periods? What? Also, 4 weeks is pretty regular) and she’s afraid of how “hard’ it will be to get pregnant again – all 3 of hers have been “accidents” and she’s been “so surprised” because of her (never-diagnosed) “severe endometriosis”.  Look. I pretty much am the poster child for severe endometriosis. Just stop before I slap you.
  • I also got treated to the full list of her child’s issues, but she denies that any of them are behavioral. I mean, he totally needs that visual chart and special chair and whatnot to not act out throughout the day, but it’s not behavioral, ok?
  • Busy week this week. The kids are home for Rosh Hashana, and then we hit the ground running tomorrow with the dentist and theater class and there’s a school event later this week and then N’s party on the weekend and whyyy does my house not clean itself?
  • No, seriously. Why can my house not clean itself. Because that would make a lot of things easier to deal with.

Big Pharma

The other day, I was reminded why I don’t get along with most people: they don’t get it. Someone on facebook posted a meme about how “Pharmaceutical companies don’t create cures, they create customers”, and a lot of people chimed in with how they’re only out to make you sicker, so you come back for more.

How lucky must you be to live in a little bubble where you can completely insult an industry that millions of lives depend on like that?

Yes, there are income and wealth disparity issues in this country. Big ones. And yes, “big pharma” is a part of that – but they are hardly unique in that, either. There are huge markups on prescription drugs, yes. But again, they are hardly unique in turning a huge profit. The discussion of wealth and income disparity has to be separate from the intent of the industry.

I can’t argue that pharmaceuticals don’t contain very many cures. They don’t. Antibiotics are curative. Chemotherapy *can be* curative for certain cancers. Beyond that, what can really be fully cured with medication? By and large, medication exists as supportive therapy, rather than curative therapy.

I don’t understand why people expect differently, and I fail to see how it’s a bad thing, or just out to take your money.

Antibiotics are only 70 years old. That’s it, that’s all. They’re new, historically speaking. Vaccines are new. Imaging techniques have come drastically far in the past 50 years, and so much of that has been in the past 15 years. Surgical techniques have gotten better and more precise. Modern medicine has come so far in such a short time. Rome wasn’t built in a day – why would we expect that the pharmaceutical industry could just whip out cures like candy?

The thing is, researchers have yet to discover the root cause of so many illnesses. It’s only with advances in diagnostics that we’re even getting close to understanding how disease begins and works. And until we know HOW and WHY it happens, we can’t even begin to hope to stop it, reverse it, cure it. All we can do is put a stop-gap on it … enter pharmaceuticals.

No one knows, really, how endometriosis begins and how it takes hold. There’s no real telling why some women stay at Stage I with it forever, and others end up with Stage IV completely out of control endo. The only surgical “cure” is to fully remove every single cell of it, which is not really truly possible. If they tried to remove all of my endo at this point, I’d be missing *all* of my reproductive organs, part of my vaginal wall, my entire colon, parts of my bladder, and who knows what else. It’s everywhere. Surgeons drop me like a hot potato. Surgeons have been running away from me since 2006.

But meantime, 3 little pills each day and I’m ok. I’m not in pain. It’s not rapidly spreading throughout my entire body. It’s not ruining my life.

It’s not a cure, but I don’t expect it to BE a cure. I know there is, currently, no cure. I can only hope that they can figure something out in the next 5-10 years because I can’t stay on this medication forever, and menopause is unlikely to truly help me at this point.

I take medication to replace my thyroid hormone. I take medication to alleviate my allergy symptoms. My son takes medication to reduce acid production in his stomach, and supplement his immune system. My mom is alive thanks to the 28 pills and 3 shots she takes each day, while waiting for the “cure” of a liver transplant that may never come.

None of these are cures; none of them are intended to be cures. And that’s ok.  They improve and extend lives. Things that would have been lethal 100 years ago are now things you can live with indefinitely. How is that a bad thing?

I hope someday, maybe in my lifetime, or my childrens’ lifetimes, that they do discover true cures to many ailments that plague society today. I think there is that possibility, because medicine has already moved at such a rapid pace. But we’re not there yet.

Yes, I am a customer of the pharmaceutical industry. I know they can’t cure me, and that’s ok, because each and every day they make millions of lives better.


Looking Towards Fall

Now that the vacation is firmly in the books, suitcases unpacked, and the travel-lag finally wearing off (seriously, it took me 5 days to catch up on my sleep!), it’s time to turn our eyes towards fall.

The big kids start school this week. In some ways it’s good – because omg the fighting! – and yet I really will miss them when they’re not home. I’m not ready to deal with the bullshit. Already, the school has violated D’s IEP, and we’re stuck with the world’s worst snack/lunch schedule. (Is lunch before 11 AM really appropriate for any child?) I’m trying to be zen about it and just send in what he needs and tell them to make it happen .. and I am also very willing to tell D that it’s not me screwing up his progress, so he can direct his anger appropriately. (I call it “learning to advocate for yourself.”)

I already feel like that helicopter parent because I had to request that my kids not use the communal crayon supply in the classroom. Germs, you know.  Which makes me sound crazy, and yet we’re dealing with a kid who is missing half his immune system. (The levels have been in the toilet all summer.) In kindergarten with communal crayons, they were constantly sick. In first grade, individual crayons, not sick as much. So there you go. And I have to go in before school starts to meet with the teacher about tube emergencies, leakage, and hydrocephalus symptoms. It’s what it is, but what it is really kind of sucks.

I’m also sure I’ll be getting a lot of flak for not putting N in prek this year, but he still has 2 years until kindergarten. And I don’t really see why kids need 2 years of prek. The other kids didn’t go to prek at all and are academically and socially equal to their peers. With prek in our area costing over $3k per year, I really cannot justify it – we have crayons and I am very capable of teaching the alphabet and numbers (we already conquered numbers up through 15 actually). The other parents think I’m crazy, because “don’t you want some ‘me’ time?” .. and sure, sometime I would love an hour to myself but mostly I absolutely treasure the time I get to spend alone with him.

We signed D up for theater classes this fall. He’s really not physically able to do sports – he would struggle and hate it. Fortunately, he has no interest. But last year he was in the school play and adored it. He’s always singing and reciting lines and .. yeah. Theater it is.

Meantime, the other kids loved loved loved the pool on vacation, and N is a little fish. He really is just a natural and so fearless. So for safety and to indulge his interest, we’re tossing around the idea of buying a pool membership this fall, and signing N and A up for lessons. Then we’d take D in for family swim time a couple times a month and get him more comfortable in the water. If all goes well, we’re hoping to install a pool in our yard in 2-3 years. (When N is old enough to be trusted to follow the rules, everyone is comfortable in the water, and when we save enough money.)

Speaking of N and old, he turns 4 in a few weeks. How is that possible, that my baby is 4?  It’s been a little bittersweet. He’s as old now as the big kids were when he was born. There won’t be more babies – and I really am ok with that, but it’s sad, too. We’re working on planning a pirate party, despite being less than jazzed about spending more time with my family. We’re also trying to come up with something else special to do with him/them, but haven’t had any fantastic ideas yet.

And of course, to round out September, there will be apple picking and festivals and generally being-busy because that’s how September is.

The big kids have already started talking about THEIR birthday (Minecraft-themed, apparently, and it might be a pool party they tell me), and A has requested a Wii U from Santa and several games. And because he already asked Santa – put in his request months ahead of time even! – he is dead certain that Santa will make it happen.  I mean, he’s bound to be first on the Wii U list, right?  And Santa wouldn’t let him down. It’s a bit of an issue because we already own a Wii and aren’t really wanting to spend $300 on a game system that may well be defunct before they get really INTO games .. but this also may be his last year of really truly believing in Santa, and I can’t bring myself to kill the magic. So, I’ve started my lookout for random sales and started saving up some gift cards and rewards and whatnot.

I suppose it’s also time to pull out the yarn and start in on this year’s hats and scarves, and I believe I need to make another light saber – in green this time – to go along with a Yoda costume.

Because this week is September. The summer heat will quickly turn to a winter chill, and we’ll be so busy that we barely notice the passage of time.


Vacationing with Other People

Well, we survived our big trip to Disney!

We had a good time, really. Highights had to be:

  • Meeting Mickey in Town Square (he talks!  The looks on the kids faces was so so satisfying!)
  • Disney Jr. Live, and lunch with the Disney Jr. characters
  • Our sunset Mexico picnic
  • Swimming (N is a natural little fishie!  He’s only ever been swimming once before and was paddling independently around on the first day!)
  • Our last day at the Magic Kingdom where we redid all the favorites and made all the final wishes (mostly mine) come true. Ice cream and the parade and mouse ears and a picture of my three happy boys on Main Street

There was just a lot of magic and the kids had so much fun, and I know we’ll all have amazing memories from this trip.

But we had to wade through a lot of bullshit to get there, because vacationing with other people is not really our thing, apparently. We went with my parents (who were basically fine) and my brother and SIL and their son (who were not fine). I’m sure they don’t like me much either at this point, though god knows I was trying to be nice.

So like I predicted, no one else planned anything and then blamed me for when they didn’t enjoy what the plans were. Hey, look, not my problem people. But half the problem was them – they held us back SO MUCH that we were sitting waiting for them and then had to rush to the next thing, which was not the relaxed touring plan we had scheduled. Look, if your nearly 4 year old (typical child) really needs his diaper changed hourly, maybe he should see someone about that. And whatever if they had been like “we’ll meet you over there in a bit”, but no, it was “watch our stuff, we’ll be back” (why does it take 2 people??). And he still naps, daily, sometimes twice, and yet they still kept dragging him along with us.  Look. He and N are the same age. N was go-go-go. If he hadn’t been ready for this trip?  We wouldn’t have GONE. (Or would have planned very differently.)

The first time we got pissed it was like a shockwave went through the house. We had to leave a park before we were ready because THEY were ready to leave, and we weren’t strong enough to push back. We got home, took the kids swimming, and then we were like “you know what?  We weren’t done.  Kids put your shoes on, we’re going out!” .. and we left. And we had an amazing time, riding some of the rides we missed, and letting the kids have churros and coke for dinner on the steps of the Mexican temple, catching the fireworks on our way out. When we got home, no one spoke to us.

The following day was the final straw though. Their kid got D sick, because apparently they can’t seem to grasp keeping their kid out of people’s faces when he’s sick. (And really, if he’s sick, why are you dragging him around in the heat to do all these things?  If he doesn’t feel well, take a freaking day off!) So I was already pissy. But then when their kid didn’t eat dinner and we had to wait while they got him another dinner (ummm?), and then when he didn’t eat that, they stopped and walked away to get him an ice cream without asking if our kids wanted any .. Well, that was that.  As soon as we realized that she really did intend to bring her kid back an ice cream cone to eat in front of our kids (who had eaten their dinners! so we were waiting for ice cream until a bit later!) … we walked away and didn’t turn back.

Because the thing is – you can either vacation your own way and buy your kid whatever you want whenever you want and take half hour diaper changing breaks (not. kidding.) … or you can vacation with the group, keeping up with the group, and treating all the kids equal. You don’t get to play it both ways.

So after that, things got a lot better. We didn’t hesitate to split off from the group whenever they started to pull their crap. We started taking 2 cars everywhere, and had some great times with just our kids after everyone else went home. Sometimes my parents came with us, sometimes they went with them. We were like “whatever, we don’t need the help” (with the obvious implication that they DID need it) “but you’re welcome to join us”.

What we have proven is that vacation with other people is just not our game. We don’t need the help, truly. I got myself and all 3 kids ready before anyone else had themselves ready to go in the morning. (2 adults, 1 child, why is it hard?? … and I had to pack all D’s food and food for N because he’s not a fan of park food.) We took our kids swimming, alone. Our kids are kind, polite, personable, and reasonably well-behaved. So even with the bullshit, it still came out ok, because we did everything we really wanted to do, *and* walked away feeling like we’re really doing ok with this parenting thing.

And so, onwards.  Unpacking to do.  School starts next week (2nd grade, egads!), signing the kids up for theater and swimming and whatever A finally chooses. Fall will come, with apple picking and festivals galore. N turns 4 in a few weeks (!!). September is a busy time.

I’m really really glad we went, and I know the sounds of their laughter and the smiles on their faces will stay with me forever. We’ll be back, Disney.  We’ll be back.



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