Throwing the baby out with the bathwater…

If you don’t know the meaning of that expression, a very brief explanation: sometime in the 1500s in Germany, an illustrator depicted a woman emptying a tub and a baby nearly falling out of it.  One possible (and popular) explanation states that, in those days when indoor plumbing wasn’t yet a thing either for removing sewage or for daily use, whole families would bathe in the same water.  The last person to get bathed, supposedly, was the youngest; when it was time to dispose of the water, it wouldn’t be difficult to not notice a baby in it.  This has long been the accepted explanation.

Later, in the 19th century, Thomas Carlyle used the expression in an essay on slavery.  His use of this proverb has been interpreted in two ways, one less kind to the user than the other.

Either way, the expression refers to remembering what is important when getting rid of what is useless or noxious.  Keep that context in mind as you read what follows.

I am a feminist.  Perhaps not enough of one to suit modern sensibilities and requirements, but a feminist nonetheless.

Now, dear readers, I will get to the point: FEMINISM (in CAPS, Bold and Italics!) is all well and good, but often the baby gets thrown out with the proverbial bathwater.

On Sunday, Donald Sylvester won an Oscar for his work editing sound for the film Ford v Ferrari.  During his acceptance speech, Mr. Sylvester thanked his wife, Penny Shaw Sylvester, as follows: “So I want to thank my wonderful wife of 34 years, who gave up her editing career for me to pursue my career. But she raised our kids, and she did a great job because neither one of them are politicians.”

Apparently, Mr. Sylvester made the whole auditorium fall silent with this statement.

He thanked his wife for her support.

People (women mostly, actually) decided to throw the baby out with the bathwater…  Without even looking at the expression on Ms. Shaw Sylvester’s face, they attacked Mr. Sylvester for…being grateful that he can do what he does because his wife encouraged him?  (You should see the smile on her face…she was positively proud and happy…you can tell just by looking at her.  She made ME smile!)

From Deseret News:

…Penny Shaw Sylvester did much more than raise the couple’s children. According to a report in the Atlanta Journal-Constitution, she also suggested her husband go into sound editing when he was considering a career change.

And she was unaware that her husband’s remarks were controversial until a Deseret News reporter reached out and shared some of the comments, which she called “ridiculous.”

“For anybody to criticize makes me extremely angry, because they know nothing about my life or my family and the choices we’ve had to make,” she said.

The couple, who live near Los Angeles, have two children, now ages 30 and 25, and Penny Shaw Sylvester decided to quit working full time when it became clear that one of the children had special needs and would require extra care.

“I was paying someone to take care of my special-needs child and I realized they couldn’t do it as well as I could. Nobody knows a child as well as the parents do,” she said.

In addition to caring for the couple’s children, she became active in the local school district, where she worked with special education, ran a summer-school program and is now involved with fundraising. “To say that I don’t work is absolutely ludicrous, but what I did do is leave the entertainment industry,” she said.

Peggy Shaw Sylvester’s work isn’t what (Lord help me…I choke on this as I type this) “feminists” think it should be.  Peggy Shaw Sylvester’s work, the work she CHOSE when she could have just as easily NOT chosen it, isn’t enough for feminists.  They are not satisfied with what she has chosen: they think she chose poorly, under duress and to her disadvantage.

That, in a nutshell, is the biggest problem the current iteration of feminism has.  That is the bug in its code.  That is the pebble in its shoe; the baby in its bathwater.

Unless a woman chooses what this new brand of “feminism” calls for, the woman’s choice is invalid.  “Choice” is limited by what “feminism” approves.  My understanding, as I argued with my mother about the validity of my desire to do this or that but not that or the other, was that it was about self-determination.  “No, I don’t want to be a computer programmer” (I could be making a lot of money now?) and “I want to stay home and actually enjoy my children’s childhood” (which, in hindsight, allowed me to be more present and proactive for J) were bad decisions for my mother, but they are good decisions for me.  They are MY decisions, and I had the right to make them…and that’s what feminism should be about.

Ms. Shaw Sylvester was not commanded by her husband to stay home and raise their children.  Ms. Shaw Sylvester didn’t JUST raise her children.  Ms. Shaw Sylvester was as much a participant in her husband’s honing of his craft as he was.  Ms. Shaw Sylvester doesn’t regret her choice nor does she think it was a step down from what she could have been.  Ms. Shaw Sylvester has done what SHE wanted/chose/decided/opted to do.

I say this because I explain this, ad nauseam, to people who think raising J has been the equivalent of wasting my God-given talents.  “You could’ve done so much more…”

Could I have?  Would I have wanted to?  I don’t know.  All I know is that the older I get, the less I look back with any shred of regret.  I regret things like cutting my bangs too short in the 8th grade or not auditioning for school plays, but then I give it a second thought and I don’t regret those things either.

I don’t have daughters, but I have grand-daughters.  The one message I would give them is the same message my aunts conveyed to me: whatever you do, make it your choice to do it.  Even when life throws at us something that is completely out of our control, something unimagined, something we’re not prepared for, we can choose.

What Donald Sylvester did on Sunday wasn’t aggrandize himself at the expense of his wife; he actually said: “I couldn’t have done this without you, and look at the work you’ve done.”  Penny Shaw Sylvester was beaming.  She was proud of her husband and of her role in his life.  And he is proud of what he has become with her by his side.

Tearing down a woman’s choice, whether it is to focus on career or family or try both, is as unfair as denying her a choice.  Taking Mr. Sylvester to task for assumptions being made about his wife’s decisions is muzzling a woman who, I’m sure, has had more than plenty to say and do and contribute throughout her life.

If we are going to be feminists, let’s not assume the only way to further the cause of women is by stomping on the choices we make, whether we agree with them or not.  I am not less of a feminist because I’ve fought my battles in the way I have.  I am, in fact, kind of a badass, and even without her husband’s declaration of the fact on Sunday night at the Oscars, I know Peggy Shaw Sylvester is a badass, too.

After a long, drawn-out silence…

Here I am.

Well, here WE are.  Our family unit is intact, and -in fact- there are more grandkids than there were when I last poked my head out of the cozy cavern that is our family life.

J is doing well.  J is very far now from being a teenager.  He is a full-fledged adult having hit his mid-twenties (officially) a mere week ago.  Where has the time gone?  (Hint: it’s settled in my joints and bones and wrinkles and the roots of my now-decidedly-gray hair.)

I would like to tell you that we’ve found balance, but the thing about balance is that it involves hard work.  A small shift and whoops! There it goes!  So on days when we’re all working at it, we’re balanced.  We do, however, tilt occasionally.  This is acceptable.  This is fine. This is the way it’s supposed to be.

Anyone who says they feel centered and balanced 100% of the time is full of shit.  My dad, who was a wise and exasperating man, used to say that absolute happiness is boring; you need to know what unhappiness feels like to fully appreciate when you are happy.

In general, though, all is going well.  We found ourselves at J’s psych appointment being tremendously positive about things like Twelve Days (which were awesome because they were low-key and as stress-free as any holiday can be) and J’s penchant for treating us like annoying room-mates (which we are…what twenty-something human absolutely enjoys the company of his/her parental units?  I certainly didn’t…that’s why I got married and skedaddled as quickly as I could).

After two years of living in this house (which we all love madly) and getting settled into our routines and roles as we all age and find our niche in life as it is now, J is so very comfortable in his rooms and home that he has become a bit of a recluse.

Allow me now to expound what this means (much in the same way I did for J’s psych who looked mildly alarmed but was very open to my explanation):

J is happy.  J is content.  J is in no way sad, bored, depressed, anxious.  J LOVES his rooms. J moves around his rooms with the ease of one who is surveying his kingdom.  J is like a cat who has found that, yes, any container will hold its body in comfort.

When J wants something, he asks for it.  When J needs something, he asks for it.  When J is in the mood to spend time with anyone, he does.  When J is compelled to protest, he does so.  When J doesn’t want something, he declines it.  He is not hesitant and he is not rude; J is simply firm and direct.  He is also patient with our insistence on wanting to check on him because we are concerned he might be lonely.  The only thing missing is J patting us on the head and saying “you poor, silly people…if it makes you happy to check on me, OK, but you’re annoying…”  We have installed a Ring Indoor Camera in his TV room, and he is very happy to be called through there rather than having us walk in and interrupt whatever it is he does.

We have seen him lounging (quite literally) on his futon with his arms behind his head, his shoulders absolutely relaxed, his legs extended and a smirk of absolute “ah, this is the life!” on his face.  We have seen him roll his eyes when we call him only to smile broadly when he realizes we’re offering him something to eat.

It had been building up for a while, this desire to not go out.  We had noticed a certain degree of anxiety and ill-humor when we had to go to J’s usual haunts.  Little by little, we started asking him where he wanted to go, and he started making sure we knew he would rather be home.

Don’t imagine, please, that J sits in a dark basement sulking.  Quite the contrary.  J’s TV room is light and airy, and his view of the street and the green area is quite lovely.  He sees the deer when they come out (sometimes a dozen of them at a time!), the cars as they go by, the people who go for walks.  A multitude of birds fly by and the neighborhood cats promenade in front of our house much to the chagrin of our dog.  J can see when his pizza is being delivered from his favorite pizza place once a week; he bounces down the stairs happily and greets the delivery person…they all know him by now.  So do the grocery delivery people: they know his likes and dislikes, and they even remember his birthday.

When he wants to go out, he asks to go and, once he has done what he wants to do, he is ready to come home.  There is no fear, there is very little anxiety.  Perhaps it is that the world is loud and that people are…self-absorbed?  People looking at their phones, in a hurry, talking loudly into little rectangular boxes they carry around.  He used to be more comfortable around strangers than he is now.  Now he’s more comfortable with people he knows, and people who are familiar with his quirks.

J doesn’t mind going to his medical appointments.  He does beautifully.  He doesn’t mind going shopping as long as he’s not going to have to spend the whole day out and about.  He likes going out for a purpose.  J is like my great-grandfather, my great-aunts, my father and me…going out is nowhere near as much fun as being at home and doing the things he loves to do.

There are days when he’s “in a mood”, and there are days when he’s relaxed.  The same can be said of anyone.  In spite of what can be interpreted at self-imposed isolation, J’s vocabulary and skills are…growing!

The young man who needed help for absolutely everything now needs less and less help for things I wasn’t sure he’d ever master doing.  Anyone who walks past the bathroom as he’s laying out all the things he needs at bathtime will think “ah, there’s a dude!”  If they walk past again when he’s getting ready for his shave they’ll go “ah!  There’s a dude who is in full command of shaving gel!”  The first day he did that it was a disaster: we sometimes take for granted applying things to our face as we look in the mirror, but we don’t know how that looks to a person with Autism.  He got the hang of it two shaves later…now he’s totally in command of the process.  He’s even starting (with supervision and help) to shave.

J is even starting to commune with the dog.  Discreetly.  Hesitantly.  Gingerly.  But he’s starting to commune with the dog.

For his 25th birthday, and taking into consideration that he’s been happier hanging out in his lair than out of it, we kept things appropriately celebratory and yet low-key: he wanted Chinese food and a cake.  He got both…in his loungewear.  Balloons.  Streamers.  Sufficient brouhaha to declare that 25 was the number…and then he sat back on his futon with his favorite blanket, his iPad, and his arms behind his head and a smile on his face.

That’s where we’re at…it’s not a bad place to be.

A stitch in time…

J is not a fan of going to the dentist.  (I don’t know anyone who is, actually, a fan of going to the dentist.)  In spite of this, he spends a good deal of time asking to GO to the dentist.  He asks me to CALL the dentist.  He tells me the dentist needs to look at his teeth.  He brushes his teeth quite assiduously and never leaves the house without having done this…even if he brushed his teeth not an hour earlier.

After much insistence on his part, I called the dentist and set up an appointment for a cleaning.  I informed J that I had, in fact, called the dentist and set up an appointment.  I wrote this prominently on the calendar.

I didn’t remind J on a daily basis of his impending visit to the dentist because this is counterproductive.  He will go from remembering to obsessing in one fell swoop and DENTIST will become a word we all hate in short order.

On Tuesday morning I told him “today we’re going to the dentist.”  You’d think I had never mentioned the concept of a visit to the dentist before.  J gave me a look that basically implied “how COULD you???!!!”

Very quickly, though, and with the promise of a taco lunch after, he got with the program.  He brushed his teeth, dressed up nicely and off we went with Dada to the not-insignificant trek to the dental practice.  All the way there in the car, as we walked across the parking and through the multiple connecting lobbies of the hospital’s different clinics and departments, J was happy and relaxed.

And then he saw the dentist’s chair.

We have all, at some point, experienced a moment in which a child or pet locks their legs and is virtually impossible to move.  No matter what we do, the child or pet is immovable.  A few weeks ago, Dada experienced such a moment with our otherwise overly-enthusiastic and rambunctious Golden Retriever.  She bounced happily out of the car and across the parking lot (on the leash, of course) and then stopped dead at the entrance of the pet store where they do her grooming.  It was the first time she went there, of course, so she was not sure what was what.  By the time Dada went to pick her up she was acting like she’d been to a resort and he was a bummer for taking her home.

J, who seems to have grown taller in the past few months, planted himself like the legendary Colossus of Rhodes (one leg here and another there) and refused (with every atom -and its components- of his being) to budge.

Correction: the only movement he did was in reverse.  Luckily for Dada, he’d had the foresight to wear shoes with rubber treads because J was pushing him back into the hallway with every step back.

J decided this was the appropriate moment to let out a series of his high-pitched squeals.  This sound is only ever more alarming to the other patients in an Emergency Room.  A dental clinic comes a close second.  I am sure that in all the other treatment rooms, people wearing little paper bibs attached with little ball-bearing chains quaked in their boots at the sound of our son’s stubbornness.

I informed Dada that he wasn’t really helping.  I also told J resistance was futile.  Dada went to a corner to take a moment to collect himself; I took J to a window to converse with him.

Five minutes it took.  Five minutes of both physical and mental resistance to the process. Five minutes of me calmly reminding him that we were there at his request.  Five minutes of deep breaths and looking into his eyes with what I hoped was a reassuring gaze.

This was, I believe, the teeth cleaning that established a record for land speed.  The hygienist, in my humble opinion, deserves a medal.  She also deserves a cash prize.  She managed to do the cleaning while J sat not in a comfortable exam chair, but rather on the chair that is provided for the extra person accompanying the patient, or the chair on which you’d put your coat while your teeth are being cleaned.

J sweated profusely, but -once he got past his “we shall not be moved” stage- cooperated as fully as one cooperates with anyone that has sharp objects and whirring machines in the vicinity of one’s gums and teeth.

The first thing he asked for when we were done was TACOS.  We told him we’d go get tacos because what goes with tacos is beer and we needed a beer.

We have to do this again in August.  This is more of a “getting to know you” thing with J and the hygienist.  This next appointment will be out of pocket because the insurance only covers visits every six months, but we’re willing to invest in developing a more consistent routine for J’s dental health.

We made it home by 1 PM.  J was not all too happy that we went to have lunch at a sit-down taco place.  I think he was ready, after the trauma of resisting and acquiescing, to bring his tacos home and eat in his pajamas, but we thought it best -since he’s been wanting to stay home more and more on the weekends- to lure him to a sit-down meal at a restaurant.

In the end, it all worked out.  We’ve been doing a good job of cleaning his teeth, and he’s getting better at accepting things that he’s not comfortable with…I say it’s a good start.

Now that I am fully recovered from my surgery and am able to take up regular exercise (instead of just sitting around wondering if a laundry basket is too heavy for the weight restrictions the surgeon imposed on me), we can go back to our “running” and calisthenics.  We both need it…  Winter felt rather long, and it’s time to fully shake off the cobwebs we’ve accumulated over the cold-weather months and my convalescence.

 

Two weeks into convalescence it’s clear I’m not Wonder Woman…

I feel quite well.  I do.  I have no pain.  The Dermabond has fallen off and my incisions are healing quite nicely.  I am able to move without discomfort or limitations…but I don’t.

This could very well be the sort of feeling that makes me overdo everything, but the wisdom (what little I have of it) garnered over years of living and doing stupid things prevents me from going Wonder Woman on this recovery process.  I am well aware, by the way, that -whatever illusions I might have harbored while in my youth and up to my ears in “clean the house, raise the kids, go to school, go to work”- I am not, nor have I ever been Wonder Woman.

I am woman.  Hear me roar.  Or, rather, I’m not yet roaring but not whimpering either.  You might say I’m growling…

It’s a low growl.  It’s the sort of low growl that says “hey, I’m here…” not the sort of growl that indicates I have any intention of getting louder.

I read a lot.  I google things.  I tinker with recipes.  I let J set the pace, and then I ask him to revise it.  He gives in.  I plan long-term projects.  I plan the garden.  I read some more.  I haven’t mastered the art of the intentional nap, but I have dozed while sitting in bed a few times.  I pet the dog and let her nuzzle me gently.  I wait for Dada to get home from work to do things I know he’d be worried if I did in his absence.

I’m healing.  I’m being patient.  This, aside from the fact that I’m getting better, is a massive step forward.  J is being patient.  J is being independent where before he would have expected me to help him…just because.

Doing this while taking into account that J has his ups and downs (don’t we all?) has been interesting.  He needs help bathing (again…that tricky middle-ear that might cause him to lose his balance); he still gets frustrated and impatient.  I am still, in spite of my reduced ability to be 100% functional, his primary caregiver.  There is a lot of negotiation taking place, but we’re both being patient with each other, and with ourselves.  For a person with Autism and a woman who’s just had her uterus removed, that’s no mean feat.

It’s all going to be OK.

It’s going to take time, but OK is out there in a not-too-distant spot ahead of us…

To the man who lives next door…

I heard you raise your voice at my husband.  I also heard my husband’s kind and polite non-confrontational way of responding.  His take, generous creature that he always has been until pushed too far, is that you’re very emotional…  My take is you’re an asshole.  I’ve always suspected this, but you proved it twice over the day I came home from the hospital and you chose (because these are choices people make) to raise your voice at a kind man who, without having to, was sharing with you a private family matter.  You were, actually, pissed off because we didn’t inform you and your wife that I was having gynecological surgery.

Let that sink in…

I am not as kind, patient and generous as my beloved better half.  He IS my better half.  He is, by far, the best one of us.  I am not as forgiving or as patient as my beloved husband is.  Like Mr. Darcy, I fear, “my good opinion once lost is lost forever.”

Sounds harsh, doesn’t it?  I know, I know.  You were “worried” or “concerned” or “alarmed” or thought you were entitled to know about something that, quite honestly, is none of your business.  In the middle of your impassioned speeches (TWO of them…you couldn’t stick to just one pass, could you?) I wanted to get out of bed, which I wasn’t really able to do with the alacrity the situation required.  OK, it wasn’t just the alacrity required, but the one I’m accustomed to…I wanted to jump up, and all I could do was roll and squirm like a turtle on its back.

This morning, when I finally decided I could go check the mailbox without being exhausted by the excursion, you had the unmitigated gall to yell at me from your driveway.  I decided (because I am older and I guess wiser) to just do the cursory wave and say nothing.  No smile.  No nod.  Just cursory wave and propel my tired forward into the house.

Had I been in the mood for an actual confrontation, it would not have been good for either one of us.

I would have told you how selfish it was of you to berate a man who has been sitting on the news that his wife has to have surgery for seventeen days, and who sat in a waiting room for over eight hours the day before.

I would have told you that whatever is going on with my body is none of your business; that my husband and I discussed how we were going to handle this information and we agreed that, to keep our son calm and our nerves in check, we would be discreet and private about my surgery.

I would have told you that, regardless of what you think our relationship is, we are neighbors.  We’ve known you for less than two years, and we are not part of each other’s inner circles.  There is no intimacy in our relationship; the closeness you share with other neighbors you’ve known longer, and who are privy to your life’s ups and downs over the years, is never going to happen with us.

We are older than you are.  We are not the social bugs that you and your friends are.  We are not prone to revelations of intimate matters because that’s not the way we live our lives.  We are the parents of an adult with a disability; our minds, our priorities, our concerns are elsewhere.

Did you even stop to think that we’d been preparing for a life-altering, routine-disrupting procedure by taking into consideration the needs of our son?  I spent the sixteen days prior to my surgery cleaning, organizing, stocking up, making sure that our documents were in order just in case things didn’t go to plan?

My husband told you, you imbecile, that not even our oldest son and his wife were informed until AFTER the surgery.  My sister didn’t find out until AFTER the surgery.  People who have inhabited my body, and who were there when my body came into this world were not informed.  These people were upset they weren’t told, but they understood why we took that tack, and they respected our decision.

You, on the other hand, decided that your hurt feelings, your sense of entitlement were more important.

You raised your voice at a man whose mother died of ovarian cancer; a man who would be single-handedly caring for his disabled son (a young man you’ve only interacted with maybe twice?) and his convalescing wife; a man who was wondering if the eviction of the uterus, cervix and fallopian tubes would be the end of what was a very, very long trial for his family.  The same fears he had when his mother was ill, dying, were revisited as he waited for my surgery (four-plus hours) and my biopsies (a weeklong wait) were completed.

You made finding out about my surgery the day I came home about you.  You made it about your sense of outrage for not being informed about a private health matter.  You made it about raising your voice at a man who is older and kinder than you, a man who wouldn’t dream of doing the same thing to you.  If you asked for help or gave us news about your family, we would help you without berating or assuming we’re entitled to any information you’ve withheld.

We would try to be supportive.  We would try to be encouraging.  We would be there for you when and if you needed us.

Showing people you care doesn’t require being offended when you’re not included in a private matter.

You put no thought into your interactions with my husband.  You didn’t stop to think about him, about me, about our son, about us.  You thought about yourself; you opted to put your sense of outrage and exclusion ahead of my husband’s relief at seeing me at home, at knowing he was gracefully handling the challenge of taking care of our son while I, the primary caregiver…the constant…the anchor, was on the sidelines recovering.

Letting people in on personal matters is a matter of trust.  We know you and your wife take things entirely too much to heart, and we know you have plenty of issues you have to deal with on a daily basis.  We respect that deeply.  We took that into consideration when we made the decision to keep a private matter private.  We know you both, for your own personal reasons, think you have to be 100% present for everyone, and we’ve seen people take advantage of your kindness and willingness to help.  We’ve seen you leave your wife overloaded with worries, work and the added impositions of friends while you leave to play golf every weekend.  When you’re around, there’s no saying no to you; you want to be so generous that you never stop to think of the people on whom you’re imposing your generosity.

We kept our private life private because that’s what makes us happy, what gives us comfort.  You felt offended by our desire to be comforted, supported and consoled by each other.  For some reason, discussing a gynecological procedure didn’t seem like the thing to do.  That we shared I’d been in hospital after the fact should have elicited a different response, but what we got was a raised voice, outraged at our desire to keep ourselves to ourselves until we felt comfortable sharing any news.

So, no…I didn’t do more than the cursory wave because otherwise I would’ve marched up to you and treated you in the way that you treated my husband.  It would have upset you (I dread thinking of what that might have elicited from you) and it would have upset your wife.  Our neighborly relationship would have been damaged even more than you already damaged it by behaving like a total ass.

We’re not better than you, neighbor, but we are more considerate and thoughtful.  A line, however, was crossed, and a new one has been drawn.  Any remote possibility that we would have established closer bonds based on the sharing of private information has been erased.  You raised your voice at one of the people I will not accept being treated in such a way.  If you raised your voice at a man who can reason and respond kindly to any conversation, what would you do if confronted with J’s clumsy way of handling social interactions?

I regret to say, neighbor, I cannot trust that you will respect our feelings, decisions, space or us.  Cursory waves it is…

 

If you want this choice position, have a cheery disposition…

“Cheery” has been in short supply around these parts in the past few months.  We haven’t exactly been miserable, but “cheery” has been more of an effort than it really should be.  It wasn’t so much because things are bad, but rather because some aspects of what should be ordinary and commonplace had been slightly (ok, more than slightly) “out of whack.”

Behold, ladies and gentlemen, one of the unspoken miseries of aging: the failing-in-some-way-other-than-the-one-it’s-supposed-to uterus.  The saying goes that “old soldiers never die, they just fade away”.  In the case of my uterus, that old soldier wasn’t dying…it was rallying to a reveille that wasn’t being played for it at all.  Just when I thought it was finally following the plan laid out for it by nature, the darned thing would go all Jack Torrance on me…

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Yes, I’ve reached the conclusion (as have the doctors) that my uterus (that most defining of all female body parts) had the obstreperous nature and characteristics of an annoying, relentless, mean man.  While other women were being visited by Aunt Flo, I was being assailed by Uncle Jack and his bloody ax.  Months of misery had turned into years, and those years were draining everyone’s patience and my well-being.

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Long story short: the damn thing (yes…damn…no darned for it…DAMN) is out and good riddance.  I’ve been home for a whole week now, and have several more weeks of recovery (slow and patient…not my forte, but there you have it) ahead of me.

As you might imagine, caring for J and doing all that was required of me in that particular area of endeavor had become increasingly difficult.  Needless to say, the erratic pattern of Jack Torrance’s outbursts was making it difficult to keep my cool and maintain a certain degree of equanimity.

J was suffering by association.  His anxiety, when it peaked, was crashing into a wall of hormonal and emotional stress that didn’t bode well for either one of us.  He cannot always properly process what’s bothering him, and I sure wasn’t in the mood to do so…so we were at loggerheads (rather loud loggerheads, at that) at random moments.

Earlier this month I visited my doctor and the options were laid on the table: either we cleaned the thing out and waited out the onset of natural menopause or we went in there and, Entebbe-like, released me from my misery.

I will grant you that, perhaps, I was a little eager to evict Jack Torrance and that colored the lens through which I looked at the situation.  I said “get him out” and out he came.  It was the right decision.  A certain medical condition -known as adenomyosis- had overtaken and angered my uterus to the point of downright unbearable cantankerousness.  Even a cleansing and stern talking-to wouldn’t have solved the issue to satisfaction.

The decision to have the surgery was made seventeen days ahead of the scheduled date.  Between then and the actual day, we told no one about it.  That is: we sat on the news and shared with two neighbors (one who is a Surgical Assistant at the hospital and the other who is a nurse).  The odds that we would run into them there were pretty high…as it turned out, the Surgical Assistant was working and her sister, in fact, was working for my surgery.  The kids weren’t told.  We wanted to keep things on the down-low, and to maintain a certain degree of calm for J while we prepared the house and ourselves for the procedure and the convalescence.

The morning of, J woke up to find the bags packed and -after a brief moment of confusion- he got in line with our schedule.  This hospital was new to him, and he was going to spend the day with Dada rather than with me.  Of course, this had weighed heavily on my mind; always I am the one who waits with him, and now he and Dada would be the ones waiting.  We were a little worried, but I prepared things as best I could.

J and Dada came in to see me at pre-op, and then they sat in the waiting area.  I made sure to tell all the nurses, doctors, etc. to please address J as they explained everything that was going on.  They did a beautiful job.  J was calm and happy in spite of the obvious stress that would be built into such a situation.  By the time I was out of surgery (it took over four hours), he and Dada were tired but relieved.  I told them to go home and rest, eat and come back in the morning to take me home.

I spent the night in a small room with my own bathroom.  I experienced no pain.  I was sore (I’d only had five holes poked into my abdomen and other such tinkering), but I wasn’t clamoring for meds. I managed to sleep a bit.  I ate a meal of potatoes, meat, and vegetables, I read, I walked around (gingerly, carefully)…I worked on meeting all the criteria for release, and -come morning- I was deemed fit to come home.

We’ve been low-key since.  I can do a bit here and there, but I do rest a lot.  I sleep better with every passing night.  My appetite is slowly coming back to me.  J is happy and relaxed, and he has accepted that Dada is working from home and will be until he returns to his office on Monday.   I’m letting thing slide because I want to make sure I recover properly.  By the time I go back to the doctor near the end of April, I want to hear “good job…you’re healing as you should” rather than “you crazy woman…you don’t need to do everything and you’ve botched this…tut-tut, tsk-tsk.”

Each day J and I sit and do something:  fold shopping bags for reusing as trash bags, fold socks, work on vocabulary, do a craft.  He is being proactive about helping Dada with things he usually waits for us to do.  Even the dog is cooperating (she is gentle and sweet rather than her usual bowl-you-over-with-love self) with this period of convalescence.

My cheery disposition is returning.  I am tired from time to time but comforted by the empty space where Jack Torrance used to be.  That the biopsies came back announcing that, other than being obstreperous and aggressive, Jack Torrance was harmless (just a big ol’ bully, really) is even better news.

Always talk to your doctors.  Always ask questions.  Always think of what is best for you and yours…

I’m glad I did.  My health was affecting J and, while this is an inevitable factor in the symbiosis of parenting a disabled individual, it doesn’t need to be prolonged more than necessary IF there is a solution for it.  In putting the kid’s well-being first, I also put mine and Dada’s at the top of the list.

 

 

Losing the cool I’ve never had…

In our little universe, Bad Days are increasingly less frequent than Good Days are.  That doesn’t mean Bad Days don’t happen; it just means that when they happen they throw us off completely because our habit of them has diminished over time.

This morning we started a Bad Day.  Anxiety and Autism, as we’ve mentioned before, can be a pretty difficult combo, and that’s what we were experiencing today.  For some reason, J was extremely anxious and started his day two hours ahead of schedule and repeating the same things over and over and over again in a very obsessive tone.

The hill heading down is a lot shorter now so things escalated and we were both pretty much emotionally and physically spent before 8 a.m.

By 9 a.m. J was into the cathartic sobbing that washes it all away, and my neck was as stiff as Sam the Eagle’s.

Last week was good.  J’s 24th birthday was pleasant in a sweet, quiet way.  He got his cake exactly as he requested, and he had balloons, streamers, a banner.  Prior to that, the holidays had been better than they’d been in quite a while.  We seemed to be on a roll.  Today we either hit a wall or we ran out of “roll”, and are left with the little cardboard spindle.  Hopefully, we will now start with a new “roll” and it’ll be double-ply and super-thick.

J has been doing well.  He has been a little less into exercise (something I started working on today…please, pass the Penetrex) and a little more into being alone.  He has been a little less into going out, and a little more into being specific about where he wants to go, what for, and when he wants to come home.  J has also started not being so difficult about his dog.  He can walk near her most days, even walking into a room without worrying about her presence, and not bat an eyelash.  The dog, for her part, has learned that J is the cue to everything…when to sit, when to not resist being sent outside, etc.  They co-exist peacefully though not yet side-by-side, and I think both are pretty much happy and satisfied with their lot in life…

Everyone is getting older.  J is getting older.  We are getting older.  It makes for interesting dynamics.  As we slow down due to age, J has to exercise greater patience with us.  He accepts the limits of his bedtime when we factor in that our schedule calls for an early start (we are up at 5, and Dada is out the door before seven a.m.) and that we often feel exhausted before nine P.M.  J, who has the habits and wishes of a dude his age, has to think to himself “I know I didn’t get out of bed until nine, nine-thirty, but these old geezers can’t stay up until midnight…even if they TRY!”  So he navigates our schedule and his with very little resentment…  There IS some, but it’s not unmanageable.

What we do have, whether people outside our home realize it or not, is a lot of activity within these four walls.  I travel up and down the stairs incessantly during the day, and there are chores to do, administrative work to keep up with, and the matter of J and the dog being creatures who require and want attention.

The doorbell rings and I answer after taking deep breaths.  The phone rings and I answer after taking deep breaths.  I take a lot of deep breaths.  More and more often I miss the gate that separated our house from the road when I was growing up.  We knew someone was there because they would honk the horn, jangle the chain, or call out.  It gave us time to collect ourselves and prepare for the onslaught that was “company.”

I don’t have that luxury.  The doorbell is right next to the door which is only 50 feet away from the sidewalk, and it takes me 30 seconds to get to the door from the farthest spot in this house.  Also, people can immediately tell I’m home…basically because I’m always at home.  This seems to translate, in our modern day and age, to “I’m always available.”

I am not.

Some days I am up to my ears in Autism. Other days I’m up to my ears in administrative tasks I need to complete.  Other days I have chores or projects I’m working on in stages.  Some days, I admit, all I want is to be left alone.  There are times when I’m quite content to just sit with the dog and read while J doesn’t need or ask for me.

Another problem I have is that people assume I am always near my cell phone or my computer.  I am not.  There are days when I hardly touch the computer at all, and most of the time the cell phone is shut off on the bedside table.  On these days, if you text me, I will not know it.

Apparently, this poses a problem.

I am not modern enough for some people, not accessible enough for others, and make things look easy by -because this is how I was raised- not complaining in all the adjective-filled glory I’d like to display.  The fact that I have an adult son who still needs his ass wiped after he poops is not something I like to discuss in polite conversation, but that -more and more- I feel compelled to share when someone doesn’t “get” why we’re tired, busy, or simply want to be left alone.

I can be sociable…in dribs and drabs.  And I will allow access to some of the more personal aspects of our family life so that people will understand why their expectations need to be lower…and lower still.  I don’t violate J’s privacy when someone is insistently not understanding my roundabout explanations about how we live.  I just nod and say “yeah, I know…you’re right.”

I listen to well-intentioned criticism with as much patience as I can muster.  I nod at statements regarding how we deserve time alone as a couple (which is being interrupted by the advice-dispensing guest), we’re still young (no, we’re not…the “youthful fifty-something with a disabled adult child is more of a myth than Sasquatch), people know what we go through (I have a 6 a.m. task you can come do for me whenever you feel inclined, and then tell me you “get” how this is necessary -on a digestive distress day- more than twice a day).

I see the little pouts (those are necessary to the proper conveyance of the message that empathy is present), furrowed brows (concern), tilted head (active listening that is formulating a peppy message of encouragement and understanding).  I understand people want to help, but I don’t think they understand the kind of help we actually need…

  1. We don’t need to be made to feel “normal”.  We’re not “normal”.  If what you present to us as “normal” is what “normal” really is, we don’t want it, thank you.
  2. We don’t need to hear the words “I feel you”, “I understand”, “oh, I know.”  Unless you are a middle-aged person dealing with a developmentally disabled adult and you are looking at your dwindling remaining years as an opportunity to “get everything ready for when we’re gone”, you neither feel, understand or know…
  3. Your irascible toddler or teenager, difficult though she/he may be, is neuro-typical.  They are in a slightly better position to eventually revise and improve their coping mechanisms as they mature.  What we have is what we get.  If Molly likes to slam the door and yell she hates you because you didn’t take her to her friend’s house for a sleepover, Molly will -hopefully- eventually realize that it’s stupid to react that way to something pretty much trivial.  J will never understand -because that’s how he’s wired, thank you- that just because his Slinky is tangled doesn’t mean that the space-time continuum won’t function as it should until I fix the Slinky…

What “cool” I have for dealing with crises of all sorts and intensities is learned.  I’ve learned to have patience and not say EXACTLY what I’m thinking when I’m thinking it.  I see in my future an old lady that everyone thinks has galloping dementia and says the first thing that comes to mind…let her talk, they’ll say…she’s not well.  The thing is I will be well, but I’ll just be old, cranky, sick and tired of being told how “normal” and “awesome” everything is because we make it look so but it’s really rather messy and can be unpleasant.  My filter will be gone.  I won’t have lost it…I will have, however, dispensed with it quite voluntarily and shamelessly…

Until then, well, here I am…I will nod, smile, not show my teeth, and say uh-huh a lot with what little cool I have.