School Year Redux

Here we are again, with yet another school year behind us.  It felt a little anticlimactic for us this year, as Joey was the only one finishing up a year of conventional school; there wasn’t that feeling of counting down to summer.  Homeschooling has a way of blurring lines between school days, weekends, holidays, and breaks.

Joey finished up junior high school.  There was a big promotion ceremony for the outgoing eighth graders last week, which, like so many other things these days, was a little overblown (this is eighth grade promotion, not high school graduation; so many ceremonies of life have trickled down to the younger set that I keep wondering what they will have to look forward to), but nice.  Overall, junior high was a pretty good experience for Joey.  It’s an angsty time.  His social circle changed a few times, and his anxieties increased in some ways, which concerns me (especially given what happened with Kevin in high school).  His grades fluctuated, depending on how much of a shit he gave (and it’s hard, as a parent who no longer believes in the institution or policies of conventional school, to enforce the school’s expectations without feeling like a hypocrite), but he finished strong.  Whatever that means – it’s a piece of paper with letters and numbers on it, right?

Anyway, he’s sort of in limbo right now.  All the kids he knows from junior high are going on to high school, and they all know exactly which high school.  Joey might start at his high school of choice come August, but he might not – it all depends on whether we manage to get our house sold over the summer.  There’s a good chance that I’ll homeschool him for a year, because I don’t want to pull him and have him change schools multiple times given our pending move (we’ll rent for a while once we arrive in Oregon while we look for a place to settle permanently). And truth be told, if I had my druthers, we would delay his starting ninth grade for a year – not because he can’t hack it academically, but I think a year to grow (which is what we should have done when he started kindergarten; he has a July birthday, so we could have gone either way) maturity-wise and size-wise would benefit him.  We shall see.

Homeschooling this year definitely had its ups and downs.  I went into the school year feeling excited and confident; I had spent countless hours researching and choosing materials to use with the girls based on their learning styles and personalities, and my own goals and philosophies.  I bought everything ahead of time and was ready to rock and roll.  Of course it didn’t turn out the way I had envisioned.  By November or December, we had ditched almost everything I had so carefully researched and bought because the girls were bored with it, and I was growing increasingly frustrated.  We had meetings and took votes, because I want them to have a voice in their own education.  We settled on a much more relaxed way of schooling which required them to take a lot more initiative and responsibility for their own learning, rather than my forcing formal lessons on them.  All in all, it was a better way to go, but it’s never perfect – probably because parenting and life are never perfect anyway.  I feel like the girls all grew academically this year – except in math, which continues to be the bane, man.  The things I am most pleased about are:

  • realizing that Lilah is dyslexic and taking steps to address that.  When I figured out back in October that she’s dyslexic, so much made sense suddenly about her short history with school and her relationship with learning; it was a revelation.  I have been working with her ever since using an Orton-Gillingham-based program, and she’s made definite strides.  It’s gratifying.
  • the amazing science research projects each of the girls did.  All I asked of them was to choose any science-related topic they wanted, to research it, and present something.  Each of them did something different. Annabelle studied the solar system – she chose the books from the library and read them, she took notes and made an outline, she put together a Keynote presentation and presented it to the whole family, she made a 3D poster representation of the solar system – completely on her own.  All I did was drive her to the library and buy the supplies she asked for to make her 3D poster.  This was a HUGE achievement for this girl who is usually repelled by anything that smells like work.  Daisy studied waves – specifically, what makes waves in the ocean.  She did all the research herself, wrote a report, and did a cool demonstration involving a tub of water, marbles, and a fan.  This was less surprising coming from her, as she is by nature conscientious and responsible.  Lilah studies volcanoes.  She chose books from the library, did research on the internet, made a working model of a volcano (not from a kit), and with a little help from her sisters, made a mini documentary about volcanoes.  They spent several weeks on their projects, and came away feeling great about what they had learned, and what they had achieved.

Homeschooling Finn has been less than glowing.  In truth, I still have a bitter taste in my mouth over how things panned out for him at school.  I believe that pulling him was the best thing for him – but only because the adults in whose charge he was created such a negative environment for him, and it wasn’t supposed to be that way.  At home, we still deal with a lot of negative behaviors with him – and yes, it’s tough and it’s frustrating.  It takes so much patience and perseverance to ignore negative behaviors, offer lots of positive reinforcement, and create opportunities for him to be successful.  I have no doubt that the negative behaviors he exhibits stem from emotional immaturity, frustration at not always being understood and not being able to do all the things he wants to do, and diminished self-esteem from all the negative reinforcement he’s gotten.  The bottom line is that the more positive we are with him, the more positive he is.  Still, I didn’t accomplish much at all with him with regard to academics.  He was so resistant to anything school-related when I pulled him out of school in January that I finally just decided it was best to back way off and give him time to regroup.  I worry about him falling farther and farther behind, but then I ask myself, “Falling behind what?  Behind who?”  It’s not a race.

Scarlett, who will be four (yes, four!) in a few weeks, also benefits from homeschooling – even if she’s not officially being schooled.  She’s my clean slate – completely unsullied by traditional school.  She mixes colors of paint to make different colors, she sounds out written words, she counts and is beginning to understand the concepts of adding and subtracting – but all of it is happening organically, and it’s a beautiful thing to see.

Kevin finished his first year of college.  He’s done well.  He’s paid for it all himself at his insistence; when we’ve offered to help with his tuition and books, he turns us down.  I think he’s owning his own education, and I admire him for it.  He’s talking about an art major; I just want him to be able to make a living and be self-sufficient.  We don’t see a whole lot of him these days; he’s either at school, at work, or hanging out with friends.  He comes home to sleep, and occasionally to eat.  That is the natural order of things, I suppose.  He may not even move with us to Oregon, as he might have the opportunity to rent a room in the home of a friend he’s known since third grade. I have mixed feelings about it.  It’s hard to imagine being that far away from this child in whom I’ve invested so much love and hope and fear for almost 20 years, but perhaps it’s time for him to go forth into the world.

As for summer break, it’s shaping up to be very hectic.  Joey and Annabelle are both at rehearsals every day for the next couple of weeks gearing up for the summer (and final) production of the theater company to which they belong; Daisy is at dance nearly every day, and she too has a show coming up, and other than that, we’re getting the house ready to put on the market, which means purging, packing, cleaning, and having work done.

And that’s all she wrote.



It is alive!

Okay, so I had my six-week post-op appointment with my doctor yesterday.  Everything is looking good, the healing is continuing, and I’ve been cleared to ease back into normal activities.  I get to begin physical therapy to strengthen my pelvic floor, too.  Pelvic floor PT?  Who knew?!  If it proves to be as salacious as it sounds, I’ll be sure to report back here.  My doctor wants to see me every couple of months for a year just to make sure everything is as it should be, which I find very reassuring (what I’ll do since we plan to move, I don’t know yet).

I’m discovering that I went into this fairly ignorant about what exactly was going to be done to me surgically, and about the recovery.  My doctor mentioned yesterday that I had seven surgical procedures done, which is quite a few more than I realized I would have.  I stumbled upon a Facebook group of women all dealing with pelvic organ prolapse (or POP) after my surgery, and I really wish I had found it before my surgery, because I think I would have gone into it with my eyes a little more open.

So, six weeks later I’m feeling pretty good, and the surgical repairs I had done seem to be doing what they were meant to do.  In a nutshell, I do not wet myself anymore.  I can sneeze, cough, laugh, and even yell at my kids, all standing up and not crossing my legs, and no leakage.  Of course, I still haven’t tested jumping or running, but I do hope to get back to walking soon, and that will be a test as well.

A lot of people seem to believe that c-sections prevent pelvic organ prolapse.  While it’s true that vaginal births can cause POP, so can pregnancy alone.  And so can numerous other things: being overweight; menopause (when supporting tissues become less elastic); high impact activities like running; and even just genetics.  It’s safe to say that the majority of women will have some degree of POP by the time they are post-menopausal.  So although my own POP was caused by my clown car of a vagina, there are all kinds of ways for your parts to fall.

I also haven’t had a period since early March (although I do still get all the usual PMS symptoms since I still have my ovaries).  I thought I would grieve the loss of my uterus – I’m serious, I really did.  But I haven’t.  To everything there is a season, etc., etc.  We had a good long run, my womb and I, but that time is in the past now, and that’s cool.

My recovery from surgery was hard.  Much harder than I imagined it would be.  I think the fact that I bounced back from my mommy job last year so quickly after I kept hearing how hard it was going to be set up unrealistic expectations on my part for this surgery.  And honestly, nobody really told me it was going to be as difficult as it ended up being (another big reason I wish I had found that FB group before the surgery).  There was a lot of pain involved, and it didn’t help that I had the setbacks I had.  I felt discouraged and even depressed at times, and maybe the worst part was feeling so alone and isolated.  I was confronted with the absence of a support network and help our family has, and in all honesty I’m still struggling with it.

In any case, I’m finally bouncing back, and ready to put that whole ordeal behind me.  Hopefully in a year I will still be saying that it was worth it.


Ten Reasons Why Public Restrooms Should Not be Transgender-Friendly

Next to Prince’s shocking death, the issue dominating news outlets and social media is the one surrounding trans people’s use of public restrooms.  The big question is: should they be required to use restrooms that correspond with their biological gender, or should they be allowed to use restrooms that correspond with their gender identity?

Wake up, people!  Why is this even a discussion?  The answer is obvious.  Of course transgender people should only be allowed to use public restrooms that correspond with their God-given gender.  Here’s why:

  1.  Transgender people are notorious sex maniacs and child rapists.  It’s a known fact.  Seriously.  Stop and think about the transgender people you know personally.  Total sex maniacs and child rapists, right?  Mmm hmm, I thought so.
  2. It is a known fact that the wafting aroma of feces and air freshener, coupled with the sound of piss hitting water from behind closed stall doors is a total aphrodisiac to perves like transgenders.  If we let them in the door of the women’s restroom, we’re seriously just asking for it.
  3. We need to protect our kids.  If a kid is faced with a trans person, especially in a restroom, who knows what long-term effects it could have?  At the very least, the kid will probably be plagued by PTSD and have to undergo Christian-based counseling, and worst-case scenario (assuming they’re not molested!), they may turn trans themselves!
  4.  Non-trans people never assault, molest, or harm anyone in public restrooms.  So, obviously, if we bar trans people from using the wrong bathrooms, we can cross the dangers of public restrooms right off our list of worries.
  5.  Everyone knows that most sexual assaults are committed by trans people, and not non-trans people.  Look it up!
  6.  The best way to earn your way into God’s good graces – and therefore heaven – is to be as intolerant and exclusive of people who are not like you as possible.  Not only does God hate fags, He also hates everyone who is not a white male cisgender heterosexual American Christian Republican.  It says so right in the bible!
  7.  Speaking of God, if He had meant for people born with penises to wear dresses, He wouldn’t have invented pants, and if He had meant for people born with vaginas and boobies to wear wingtips, He wouldn’t have invented Victoria’s Secret.  Think about it.
  8.  If we let trans women use women’s restrooms, and trans men use men’s restrooms, what’s next?  Are they going to want to eat at the same restaurants as us, too?  What’s to stop them from frequenting our grocery stores and banks and schools?  They may even demand to be allowed to drink out of regular-people drinking fountains!  They’ll take over the world, I tell you!
  9. We normals should not be made to face things that make us uncomfortable.  I mean, seriously.  If trans people are uncomfortable with the law of the land, it’s just their punishment for being so … not normal.
  10.   Because, cooties.  Ick.

The Road to Recovery is a Bumpy One

When we last tuned in, I had visited my doctor again and was sent home without the catheter and many wishes for happy peeing.

(I never dreamed I would be writing so much about not only peeing, but my peeing.)

My doctor was confident that I would see noticeable improvement over the next few days.  This set up certain expectations on my part, expectations that were quickly dashed.  For the next several days, I had an extremely difficult time peeing, and I was miserable and filled with thoughts of gloom and doom.  What if this is my permanent condition?  I thought.  What if I have to have another catheter placed?  What if … what if I have to self-catheterize?

I spent a lot of time crying, swearing, and generally wallowing in self-pity.  It seemed so unfair that I put myself through such a horrendous surgery to fix a certain problem, only to end up with the opposite – and worse – problem.

Also, Wednesday (the day after I had the catheter out) I started feeling under the weather.  By Friday it was clear that I had a bad cold, or the flu, or some other communicable disease.  Kevin was also sick, as was Finn.

By Sunday, I had made up my mind to call my doctor (the uro-gynecologist) Monday morning, about my continued difficulties peeing, come what may.  I was beginning to fear kidney damage, sepsis, or who knows what.  But suddenly Monday morning, there was a noticeable improvement.  And things have continued to gradually improve since then.  Still not back to normal, but peeing is no longer an ordeal, and I’m no longer worried about dying from urine poisoning.

The things we take for granted.  Next time you visit the loo, I want you to really be present in the moment.  As you listen to that golden shower, and feel the warm flood being released from your body, rejoice.  Do it for me.  In fact, it will make me very happy to know that people the world over (or the three or four of you who read this blog, anyway) are thinking of me as they shake the dew from their lilies.

Meanwhile, by yesterday morning, in other respects, I felt like death.  I dragged myself in a feverish fog to my GP, and was diagnosed with pneumonia.  I was given a breathing treatment in the office and sent home with a prescription for a z-pack and an inhaler.  After two doses of the antibiotic, I am feeling more like myself today.  Hopefully I will be completely well and back to my obnoxious self within the next few days, and this will all fade like a bad dream.

In other news, the Oregon state bar exam results were published on the state bar website last Friday.  I am not overstating it when I say that it was absolutely thrilling to be sitting here with Michael, and to scroll down and see his name among the mere 60% of candidates who passed.  There has been a part of me over these six weeks since he was up in Portland taking the bar exam that was very confident that he would pass – because I know how smart he is, how well he thinks on his feet, and, well, there was probably a naive part of me that just couldn’t imagine him not passing.  I didn’t start to doubt until the day the results were going to be posted.  He, on the other hand, had serious doubts all along.  He came back from Portland saying that the exam – especially the second day – was incredibly difficult, and the reality is that he only devoted less than three weeks to studying, given that he has a law practice to run.  Many people study for the bar for months – full time – and still don’t pass.  So, I’m kind of in awe of him right now (I’m sure this will pass next time he pisses me off).

So, Oregon.  We have no definite plan at this point.  In all honesty, now that this hurdle is out of the way, moving seems even more daunting than it did before.  Maybe because before he took the bar exam, it was all hypothetical.  Now, it’s like, are we going to put our money where our mouth is?  So much to figure out.  A law practice to wind up, a house to sell, and adult kid who can’t yet support himself, but who also doesn’t want to leave California.


Fifteen Days Post-op

waterfall-02I know, you’re all dying to know if I’m peeing yet, right?

I went back to the doc this morning for another voiding trial.  I peed this time.  I expected that successfully peeing after this ordeal would look a lot different than it actually looked: I expected a gushing river, by god!  But no, it was a mere trickle, and that took a lot of effort.  I was able to empty a little more than half of the sterile water they put in, and the doc was satisfied with that, which, honestly, shocked me.  When she came in and said, “You’re good to go!” I thought I misheard her.  She explained to me that it’s very much like having one’s arm in a cast for several weeks; when the cast comes off, the arm is a little weak and thin, a little atrophied from non-use.  Same with a bladder being continually drained and compressed by a catheter: it needs to be exercised again, and she’s confident that I will see a lot of improvement over the next few days.

I’m wary, cautiously optimistic, and so freaking glad to be rid of that awful catheter and pee bag.  It’s been the one thing holding up my recovery it feels like; my pain from the surgery is pretty much gone, my energy is gradually coming back, but hauling that damn thing around – and not even being able to wear actual clothes – it was such a total drag.

So, I’m not back to 100%, but I’m getting there, and this was a big step.  I still have to take it fairly easy for the next month or so – no heavy lifting or housework, no power walking, etc., because everything is still healing inside, but I feel the funk lifting.

If anyone out there comes across this and is anticipating the same surgery at some point, just know that the first couple of weeks after the surgery will be fucking misery.  Expect setbacks.  I have not talked to a single person who has had this surgery who has not experienced some form of setback.  It’s a major surgery, and the recovery is not easy.  That is not to say “don’t do it.”  Living with pelvic organ prolapse and incontinence is also misery.  The general consensus is that the surgery is worth it for long-term quality of life.  If you can resign yourself to a couple of weeks of a form of hell, you will be good to go.


Nine Days Post-op

My recuperation is slow and discouraging.  I went back to the doctor this morning for another “voiding trial,” and I was super hopeful, but it turned out that I still can’t pee on my own, so I’m stuck with a catheter and a bag of urine strapped to my thigh for at least the next week.

I think it’s safe to say that I’m rather depressed at this point.

Michael is mostly back at work – he does have a practice to run, after all, and we have bills to pay.  The kids are on spring break and I feel utterly disconnected from all of them.  I spend my days in pajamas (there aren’t many clothes you can wear, as it turns out, with a bag of piss tied to your leg), resting as much as I can, and feeling very gloomy.  I still don’t have much appetite, and have now lost seven pounds since surgery.  I’ve been reading some, watching a few movies.  I didn’t even pick up my knitting for a week, and even now don’t feel very enthusiastic about it.  I am driving a little.  Went to the store yesterday, hoping I wouldn’t run into anyone I know because I don’t feel like chatting with anyone (I didn’t), and it completely wiped me out.  I came home and slept for an hour and a half.

Next week we need to get back to some semblance of structure and school.  I feel bad that no school has taken place since a couple of days before my surgery.  I feel like I’m failing my kids.

I’ve decided that I would not make a good candidate for any long-term illnesses, so I’ll pass on all of those, thanks very much.

Years ago when I was a manicurist (yes, I was a manicurist!), I had this regular customer, and older woman named Lydia.  Every week when she came in, she reeked of urine.  Back in the day, women just had to live with incontinence.  I think of her often, and I think, well, it was either that or this.  Hopefully this will turn out to have been worth it.

Hopefully there are better days ahead.  Hopefully in a few months I’ll be able to look back on this ordeal and laugh about it.  For now, it sucks completely.


Four Days Post-op

My surgery was this past Monday morning.  I barely slept Sunday night, I was so anxious.  We got to the hospital at 5:30 a.m., and I was taken back to pre-op right away, where I spent the next couple of hours doing all of the pre-op stuff: changing, getting a routine pregnancy test (which, seriously, made me laugh), answering a thousand questions from the nurse assigned me, getting an IV, and meeting briefly with the anesthesiologist, surgeon, and OR nurse.  I said good-bye to Michael, who had to get home and get Joey to school, around 7:30, and then I was wheeled into the OR.  As soon as they started wheeling me away, I broke into tears.  I have recently become very aware that my first response to extreme stress is crying; this tough girl is really just a big crybaby.  Anyway, in the OR, I was cheerfully greeted by the surgeon and other people behind masks.  The last thing I remember is being hoisted from the gurney to the operating table; fade to black.

I came to slowly and groggily, with no idea of how much time had passed.  Everything is very fuzzy.  I could hear voices and sense movement, but that was about it.  Eventually, I woke up properly, crying.  Anesthesia has resulted in crying for me in the past.  Michael was there.  I think I told him that I wanted to go home, and I think he chuckled.  My throat was very scratchy, presumably from being intubated during surgery.  Nurses were fussing around me.  I was very cold and shaking.  They put blankets over me.

A little while later I became aware of pain, and that’s what I remember the most from that first day.  The pain was horrendous, and I had not been anticipating that.  It was like the peak of the worst labor contractions – which I could handle because labor contractions came and went in waves, while this pain did not leave.  It was that peak of the worst labor contraction, but with no letting up.  I was pale (apparently) and shaking and crying for the pain.  The worst part is that I can’t take the usual pain meds (Vicodin or Codeine), as they make me vomit violently.  So they kept trying different pain meds and nothing was touching it.  They tried six different medications, and nothing was giving me any relief.  I thought I was going to die – I think I wanted to die.  Finally, I was given a bolus of Dilaudid in my IV, which immediately made me vomit, but which finally brought me relief.  Within fifteen or twenty minutes, I was praising Jesus (okay, not really).  They then set me up with a Patient Controlled Analgesia (PCA), which allowed me to deliver a small dose of Dilaudid through my IV every ten minutes via a pump which I controlled with the push of a button.  They were also giving me Pepcid through my IV for nausea.  I didn’t hit the button for more Dilaudid until a few hours later, and the pain was well controlled until the middle of the night when the Dilaudid seemed to become less effective, so they added a high dose of Motrin orally for pain and inflammation and an oral muscle relaxer.

So that was the first day, marked by horrendous pain.

Tuesday it was anticipated that I would be discharged around noon.  They weaned me off of the Dilaudid, and kept me until they were sure that the oral regimen of pain meds was working, as that is what I’d be sent home with.

This is the surgery I had, with a partial hysterectomy:


This surgery, again, was done to remedy pelvic organ prolapse which resulted in urinary incontinence.  I’m nothing if not an open book, folks.  This is a problem that many, many women have, and it’s an embarrassing one, so it’s not something much discussed openly.  So, let me be the one to say, if your uterus and/or bladder have fallen, if you pee yourself all the time – you are not alone.

Also, although the pamphlet I got only talked about the surgery being done through abdominal incisions, my entire surgery was done vaginally, so I have no external incisions.  As bad as this is, I think it would be even harder and more painful had it involved abdominal incisions.

Anyway, any long surgery requires that the patient be catheterized, and pretty much any surgery involving the bladder and/or urethra is going to necessitate catheterization for a period of time after the surgery.  We did a “voiding trial” before I was discharged on Tuesday, which is a fancy was of saying that they filled my bladder with sterile water, removed the catheter, and then had me try to pee on my own.  I tried repeatedly for over an hour, and nothing.  It was the strangest and most frustrating thing to feel like you have to pee worse than you’ve ever had to pee, but it just ain’t happening.  I finally begged them to put the damn catheter back in already, or my bladder was going to bust I feared.

So, I went home with a catheter and a big pee bag, which was good for some laughs with the kids when I pretended it was a fancy new handbag.  I was bummed, to be sure, but this was not wholly unexpected; I was told before the surgery that there was a pretty good chance that I would go home with a catheter.

I went back to the doctor yesterday morning – so three days post-op – for another voiding trial, and still nothing.  It was discouraging.  They put another catheter in, this time with a smaller bag that is strapped to my leg (which is slightly more handy, at least), and sent me home.  I don’t go back to try again until next Wednesday.  If I still can’t pee then, I don’t know what I’ll do.

So far, it’s been a pretty rough time.  I think because I had such a smooth and relatively quick recovery from my mommy job last year after so many people told me how tough it would be, I expected this recovery to be fairly easy.  I am popping a cocktail of pain meds every few hours, which make me woozy and exhausted, so I am in bed most of the time.  The meds also make me nauseous, so I’m also taking an anti-nausea medicine which also makes me drowsy.  Although I’m exhausted, I sleep in fits and starts, and my sleep-wake cycle is all screwed up; half the time I don’t know if it’s day or night.  I have very little appetite, and have lost 6 pounds since Sunday.  I pretty much feel like shit.

Michael has been doing everything – on top of working (mostly from home), he’s cooking, bathing kids, getting them to their various activities, mediating fights, and trying to keep the kids out of the bedroom so I can rest.  This is impacting the whole family.  Hopefully it will, in the end, have been worth it.


Ode to My Uterus

It all started on a summer day in 1980.  It was a week before my thirteenth birthday, and the day I had long-awaited finally arrived.  Just like Margaret in Are You There God?  It’s Me, Margaret, I laughed, I cried, I rejoiced.  The blood-stained panties signalled my entrance into womanhood.  Scrawny, awkward, terribly insecure, but womanhood all the same, dammit.

My uterus and I have had our ups and downs over the succeeding 35 years (35 years!!) – the downs really limited to a period of years when it failed to produce a baby despite my often tearful longing for motherhood (which failure turned out to not be my uterus’s at all, but my first husband’s).  By and large, my uterus has been very, very good to me.  I haven’t ever really minded all the periods, to be honest.  Not that they’ve been fun, but I’ve always seen them as a sign that everything is in working order, and it’s all made me feel very connected to my womanhood.  (You can stop reading here if this is nauseating you.)  And by gosh, this uterus of mine has grown seven amazing human beings.

Yep, we’ve been through a lot together.

And now, it’s time to say goodbye.

On Monday morning, I will be having a hysterectomy.  I am feeling a lot of feelings about it.  There is nothing wrong with my uterus, per se, it’s just that all the good work it’s done over the years has resulted in things … collapsing.  Which causes me to pee myself all the time.  So I’m having surgery Monday morning to remedy this, and hopefully improve my quality of life.  This is a whole pelvic reconstructive surgery; the doc is going to go in there and reinforce and hoist things back up to where they should be, and unfortunately, the old womb will get the heave-ho in order to ensure the best possible results.

On an interesting side note, remember all the hoopla about my heart last year before I had my mommy job?  How I had an abnormal EKG prior to my surgery, which led to all kinds of tests and a whole lot of worry and lost sleep?  And remember how all the tests showed that my heart was fine, but that I had a potassium deficiency and that the high blood pressure med I was on was not an ideal med to be on?  Well, I have been with a new doc for about a year now, who changed my bp med, and I’ve been taking a potassium supplement regularly since then (it’s still a mystery as to why I had a potassium deficiency).  I had to have an EKG a couple of weeks ago for this upcoming surgery, and I was nervous about it after what happened last year, but it was normal.  So, there you go.

I am, of course, getting more and more anxious about the surgery itself as the hours and minutes tick towards Monday morning.  The whole idea of being under general anesthesia – of having hours of my life completely lost to me – freaks me out.  I worry about the recovery (complete recovery takes six weeks; I have no idea how long I’ll feel like shit or what kind of pain to expect or for how long.  I have a friend who had this same surgery a number of years ago and she had a very rough time recovering).  I have to do a super fun cleanse tomorrow that I am kind of dreading.  And then there’s the whole idea of no longer having a uterus.  Not that it’s serving any purpose anymore, but it’s sort of bittersweet, you know?

Maybe I’ll have it bronzed.



People First Language and Identity: There’s More to the Conversation

I came across a link to this article in my FB newsfeed earlier this evening, and it’s got me thinking about a lot of things.

The first thing I want to say – and I’ve had this on my mind and have been wanting to write about it for some time – is that I’ve moved beyond feeling, and insisting to the world, that Down syndrome doesn’t define Finn.  You know what?  Down syndrome absolutely does define him.  Down syndrome and the particular ways it manifests in him shape so much about him: it shapes how he experiences the world, it shapes how the world experiences him, and to a very large extent – possibly to a greater extent than any other single thing – Down syndrome will influence and even dictate the path his life takes.  So, to continue to say that Down syndrome doesn’t define him is both an untruth and a disservice to him and to all people with Down syndrome.  It’s a disservice because it’s dismissive (by and large by those of us who do not have Down syndrome) of his experience and his identity, and moreover, it relegates Down syndrome to something that is negative and undesirable.  We would never insist that someone is not defined by something that we see as positive (he’s not defined by his wisdom; she isn’t defined by her compassion); we only say this about traits that we perceive as negative, and we say that a person isn’t defined by things we see as negative as a way to try to diminish their impact on the person in question, and really, their impact on us, because those things make us (the people who do not have those particular undesirable traits) uncomfortable.

I’ve begun talking to Finn about Down syndrome.  At this point, I really don’t think he has any understanding of what Down syndrome is, or even how it pertains to him, except that he is aware that he looks like other people with Ds; when he sees pictures of other kids with Ds, he’ll point to them and say “Finn!  That’s Finnian!”  In any case, I want to instill in him from this young age that he has Down syndrome, and that he should feel good about it.  He should own it, damn it.  I never want him to perceive Down syndrome as something negative, something he wishes he didn’t have.  I never want any of my kids to wish they weren’t who they are.

So, this leads me to the People First Language issue.  I admit that I’m wrestling with it.  Amy Sequenzia makes some excellent points in her article (if you didn’t click on the link above, go read it now: People First Language and Ableism), but I feel like some nuances are overlooked.

I still tend to use PFL and appreciate when others do – unless told otherwise by directly affected people (for instance, I am now very aware that autistic people prefer to be called “autistic” and not “people with autism”; I respect this, and therefore have made that change in the way I talk about autism) – where it pertains to Finn.  There are a few reasons for this: first of all, although I do not see Down syndrome as negative or undesirable, and I accept and even embrace that Down syndrome does, in fact, define him, I’d still like to think that our shared humanity is the thread that binds us all together, and what separates us from other beasts.  Maybe this is a Pollyanna-ish view, I don’t know.  In my mind, it’s not that I don’t want people to see his Down syndrome, or that I want to attempt to diminish its impact on him, it’s more like this: if you can see his humanity and see how his humanity relates to your humanity, then hopefully you can see him with compassion – not pity or disdain – and hopefully you can see that he is a whole, complex human being, and not a subhuman defect.

There is also the problem of word usage and how awkward it can be.  I’m talking about grammar, I guess.  See, while autism has an adjective equivalent (autistic), Down syndrome does not.  So when someone says, “He’s Downs,” or “the Downs kid,” it grates on the ear (at least mine) because “Downs” is not an adjective.  Plus, I guess I have somewhat of a problem with using the name of the guy who believed and promoted the notion that people with Down syndrome were actually an entirely different species – a sort of subhuman species that had manifested from some sort of reverse evolution – to identify my kid.  Yes, I still use the term “Down syndrome” to describe my son even though I’m not a huge fan of Dr. John Langdon Down’s ideas, but only because it’s the term that most people are familiar with.  If you say, “Trisomy-21,” most people have no idea what you’re talking about.

Anyhow, so there is no adjective version of Ds or T-21 that I’m aware of that would make “_______ person” sound right, from a linguistic standpoint.  Ds isn’t the only disability like this; what about cerebral palsy?  Would you say, “she’s cerebral palsy,” or “the cerebral palsy man”?  Or pretty much any “syndrome.”  How about Williams syndrome or Fragile X syndrome or Prader-Willi syndrome?  None of those have adjective equivalents, so it’s just awkward to use them as adjectives.

So, let’s just say “disabled” then.  I can get on board with that, except that it’s just such a negative word.  I mean, if you disable a smoke alarm or a machine or a bomb, you render it inoperable.  Are disabled people inoperable?  Do they no longer “work”?  No.  And if you think about it, all of the most common “dis” words in the English language are negative: dismember, disenfranchise, disrespect.  In fact, the dictionary defines the prefix dis as follows:

Screen Shot 2016-03-03 at 8.58.12 PMI wish we had a word that wasn’t itself so negative.  “Differently-abled” doesn’t work, either, because in its insistence on focusing on ability, it’s ableist.  So where does that leave us?  I don’t know.  I guess we’re stuck with “disabled” and all of its inaccurate and negative connotations.

Perhaps I’m splitting hairs over language and terminology, but I think all of these subtleties are worth contemplating.  A big part of the problem is that, yes, it’s very often – probably almost always – people who are not disabled who are deciding the language that gets used.  A lot of them, like me, are parents of children with one or another diagnosis – parents who do not themselves have those diagnoses.  A lot of us are thrust into this world of disability, and we’re trying very hard to be advocates for our children, and, yeah, we fuck up along the way.  Speaking for myself, having Finn was my first ever experience with disability.  When he was born, I didn’t know Down syndrome or disability from my ass.  God, some of the things I thought and said and felt in the beginning truly make me cringe now.  But there was never a single moment when I did not love my son fiercely, and all along I’ve tried to advocate for him and for the larger disability community.   I heard and read things over the years that resonated with me and made perfect sense to me – like People First Language.

Advocacy changes; the language that we accepted a few years ago is now offensive, so now we advocate for new language.  That language will one day also be offensive, because it will be misappropriated and turned into slurs, or it will take on new ableist connotations.  Hot button issues of today will be replaced with hot-button issues of tomorrow – perhaps issues that we can’t even conceive of today.

So, what I’m getting at is that it’s just not so cut and dried.  Being an advocate and a true ally is an ongoing, lifelong process of listening, reflection, introspection, contemplation, and growth.




Hello there.  I’ve missed you all, too.  Life is busier and I am more frazzled than ever.  Here’s a rundown on the newsworthy and the not newsworthy:

Homeschooling has become pretty much a full-time job.  In fact, Michael even said to me recently, “Wow, it’s like you have a full-time job.”  (Because, you know, I was living a cushy life of leisure before I started homeschooling.)  It’s not that our school days last all that long; in fact, we still almost always finish up by lunch time.  It’s that I spend so much time thinking about it and worrying about it and reading about it and trying to figure it out.

I’ve become a lot more relaxed about curriculum and lessons – I wouldn’t say that we’re unschooling exactly, but probably a hybrid of unschooling and relaxed schooling –  and the girls are becoming more independent and self-directed in their learning, although Lilah still needs quite a bit of help and input, and the program we’re using to address her dyslexia involves formal daily lessons and exercises.  For the most part, the girls and I talk about goals, we have a loose schedule hanging on the refrigerator which they consult, and they pretty much run with it, and I feel like my role is more and more of a guide or consultant.  And sometimes a moderator, because let’s be honest: put a handful of kids together day after day and they’re bound to get on each other’s nerves, antagonize each other, and vie for attention. But that’s just siblings, homeschooling or not.  Also, Annabelle continues to challenge my patience and stamina, as she has since toddlerhood.  She’s the clown, the goof ball, and the least cooperative in all things.  She and I butt heads a lot, which saddens me.  Sometimes I see my relationship with her fulfilling my worst fears about having a daughter – but that’s fodder for a whole other post.

I’m still trying to find a groove with Finn.  I don’t feel that unschooling can really work for him, because he is absolutely not self-directed.  He would be content to play on his iPad all day, every day, maybe for the rest of his life.  He’s curious about the world around him to a degree, but he has no innate interest in or motivation to learn to read or count or write or any of that boring stuff, nor does he have any concept of the value of those things, so educating him is a whole different ball game than educating his typically developing siblings.  I have to be very deliberate in teaching him, and I have to find ways to do it that are interesting and palatable to him, and right now I really have my work cut out for me because I think the last few months of school really tweaked him and turned him off to the whole idea of sitting down and learning.  So we’re taking it slow, and sometimes I feel a little panicked because I feel like we have so much lost ground to make up, and so much new ground to cover.  So I have to stop periodically and take a deep breath and remind myself that all we have is time, and there is nobody and nothing we need to catch up to.I’ve taken up knitting.  This isn’t news if you follow me on Instagram or Facebook.  Anyway, I’ve wanted to learn to knit for years and years (and I still want and plan to learn to crochet), and I finally bought some yarn and knitting needles and an instructional book for beginners (which didn’t help much; I find that I learn much better by watching, so YouTube videos have been awesome), and began with a scarf for myself in my favorite color:IMG_1226knits

Since then I’ve knitted a couple more scarves and hats, but I want to move on to some more complicated projects.  I love it, I really do.  It’s very Zen for me.  After the kids are in bed, I climb into bed and knit while I listen to a book on Audible.  A girlfriend (who is a longtime knitter) and I have started getting together at each other’s houses on Friday nights and knitting together over drinks.

Michael was gone for most of last week, in Portland taking the Oregon bar exam.  That’s right folks – this whole moving to Oregon thing may really happen.  It’s exciting and scary as shit.  But first things first: bar results will come out in a few weeks.

I am having a hysterectomy in less than a month.  I’m sure, being the over-sharer that I am, that I’ll write more about it as it gets closer, but for now, I’m having a lot of mixed emotions about it.  It’s all part of improving my quality of life (I pee myself constantly.  I’ve had seven babies, yo.  It takes a toll on a body), and that part I’m looking forward to, but gosh darn it, I’m pretty attached to my womb.  We’ve been through a lot together.

There are other topics flittering around in my head that I want to put words to here sometime soon, but for now, this is the nitty-gritty.

Until next time …

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