Every Monday at school, the class gathers around and shares what happened that weekend, or something they’re looking forward to in the week ahead.

Every Monday morning, I watch my twins negotiate the delicate path of separating their overlapping lives. “I’ll say we went apple picking, you tell them about the pie.” “I didn’t really like that movie, so you can talk about that, and I’ll talk about playing in the leaves.” It doesn’t always go smoothly, but most often they are able to divide topics among this imaginary line. This is yours/this is mine, even though both are really ours.

In this world, we’re so constantly pressed to share. Our photos, our memories, our deep thoughts, and our mundane tasks get put up for public or semi-public consumption. I constantly struggle with knowing what is mine to share and what is more rightfully someone else’s. Even if it is their story, are my thoughts and feelings about it mine to share? Where is the line?

I try to set boundaries and stay within them. No pictures of my children that they may someday find embarrassing – no nudity, no pictures of them sick or in the hospital, no pictures of them crying or in trouble. No public discussions of potty training, circumcision, or anything regarding the private areas of their bodies. No stories that may embarrass someone else. No discussions of my marriage or sex life.

Still, I struggle. Our lives are so intertwined that teasing out what is specifically mine is so often too complicated, and I end up walking away without having said anything at all.

It’s interesting watching them navigate it so easily. Is this the effect of growing up in an over-shared society? Much like their innate ability to manipulate a touchscreen and pick up on the finer points of Minecraft, will they grow up having this instinctive knowledge of how to extract their individual story from the larger mesh?

I’m glad to see it, proud to see it. So many people share indiscriminately and thoughtlessly, unconcerned about how the other person may feel. Instead, they carefully discuss and agree before any information is shared, so no feelings are hurt. It’s curious and heartwarming to see them so concerned about respecting the boundaries of others. I can only hope they continue along this path, thinking before sharing.


When I Die

I’ve always said that when I die, I don’t want a funeral. No services. Because who would come? Why spend all that money when no one would come? Take the money, go on vacation.

An old family friend is dying, and it’s really depressing to watch, even from afar. All her old friends making time to visit her, to say goodbye. But the thing is – where were they these past 10 years? If you haven’t seen someone in 10 years, why are you going to say goodbye? To make yourself feel better? If you care about someone, care about them when they’re alive, not when they’re dying and dead.

I’m watching my mother watch her friend die. I’m watching my mother know that it’s been 8 years now since her accident. It should have killed her. She should have been dead several times over by now, and she’s not. She knows she’s lucky, but she knows, like her friend, she can’t keep cheating death. It will catch up with her eventually.

She keeps saying, she’s going to have the surgery the doctors brought up a few months ago. The surgery that, if it works, will give her a higher quality of life. The surgery that, if it fails, will kill her. The odds are about 50-50. I think she’s hit a point where she just doesn’t want to go on like this anymore, too healthy to be dying, too sick to be living.

She feels forgotten, invisible. I can understand why. I talk to her every day, usually two or three times. I do what I can, but I’m only one person.

I’ve promised her, when she dies, I won’t let people pretend like they cared when they didn’t. No bullshit from my father’s family, or her estranged brother. No teary eulogies from people who can’t be bothered to call her or take her out to lunch now and again. I’ll take down her facebook page so people can’t keep leaving messages “to” her as if she could read them … when no one sends her messages now.

I can understand where she’s coming from. You can only go on so long being invisible before you start to feel like no one would notice, much less care, if you were gone.


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.



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