Daylight

One short week of school vacation - time off the clock - and the days have gotten noticeably longer at the fringes. When I took Jacob down to wait for his bus this morning, we were watching the early-walking dogs and their people stroll by in daylight, not darkness.

The yellow of the school bus rounding the corner popped against a truly blue sky. And my dour wintry spirits lifted, too, sniffing hopefully towards spring.

*

Tonight, walking home from picking up Ethan at Hebrew School, for the first time in forever it was not completely pitch black night at 6 pm.  Ethan and his friend, our next door neighbor whose mom I “foot-pool” with, were busy talking their 9 year-old-boy-talk of video games interspersed with mock battles that threatened to engulf the sidewalk-sharing passersby.

I just didn’t have the energy to scold, hoped no bodily harm was being done, walked three paces ahead with Jacob on my arm, ever chivalrous.

Jake and I had one of our typical conversations the whole way home, he repeating the same three or four questions over and over, never ceasing in his delight at the correct-to-his-mind answers I doggedly offer back. 

And while the topics often skew to the obvious, they also occasionally delight and surprise.

Jake was talking a lot about the earth and the sky tonight, impressed, as was I, by the moon playing peekaboo with us between the tall buildings. It was in between phases, not quite crescent yet shy of half full, and fuzzy about the edges, giving it a soft, somewhat unearthly glow, as if we'd slipped into a Maxfield Parrish painting. 

"Where is the planet, Mom, where is the earth?" Jake asked. And I assured him we were walking upon it, each and every time.

"When you were dead, before you were a baby, did you live in the sky, Mommy?"

OK, didn't expect THAT one.

A complex and somewhat... unusual cosmological concept going on here. A moment's reflection upon his current Japanimation obsession, though, solved the mystery of its origin. 

In the DragonBall-Z-Kai universe, people are always dying and being brought back to life, and hanging out on a platform in the sky while waiting for that to happen. 

Explaining the improbability of all that to my autistic son was quite beyond my ken tonight, so I just waived my hand in the air and proclaimed it to be a bunch of "made-up TV story nonsense" and not the stuff of real life.

He smiled indulgently, knowing how much more real his beloved Goku and Piccolo are than I will ever know, and, as we were on our block, no more streets to cross, ran the rest of the way home, West toward the fast-fading, last pink echo at the horizon.

I trudged behind, watching the evening's first stars emerge, casting their fuzzy glow about the sky; setting down, one in front of the other, my feet upon this planet, following my boy home.

Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

Magic

I don't believe in magical thinking, really I don't.

Well... not much at any rate.

But, sometimes?

I do believe in fairies, I do, I do, I do.

Blog fairies, as it were.

And the gods of Autism, who are sometimes merciful.

My last post, When Autistic kids get bored..., was about Jacob, and how I had resigned myself to patience about his morning waking habits; about how after nine long years he STILL waits for us to come to him.

And then?

The day after I posted it, I woke up to Ethan at my bedside, telling me he was going to be up for the day now. When I asked if Jacob was awake too, he said he didn't know.

I asked him to go check, and he shouted back from their bedroom (right around the corner from ours, it's a small apartment) "Yes, he's awake!"

"Well, tell him to get out of bed and come see us." I suggested, hopefully, for probably about the 100th time, knowing it was fruitless, that I would need to abandon my cozy warm bed and go retrieve him shortly.

But, wait... what was that I heard?

The sounds of a 100 pound nine year-old climbing down his bunk-bed ladder?

YES!

"I'm coming to YOU!" Jakey announced, very proudly, as he bounded into my room. I gave him a hug and kiss, directed him to take care of morning bathroom business, told him I'd meet him in the living room in 15 minutes.

And the next morning?

He got out of bed BY HIMSELF while Ethan was still sleeping, and came to me. Still a little hesitant with the newness of it all, still unsure it was the right thing to do.  "I'm coming to you, Mommy?" he asked, as he walked into the room..

"Yes!" I said. "Oh, my big boy, I'm so proud of you for getting out of bed by yourself and coming to me without waking Ethan!"

And then he climbed into our bed for a big happy cuddle, and then I took him out to the living room and we started our day.

And, yes, it has happened every morning of vacation, ever since: Jake comes to us, Ethan gets to sleep in. Win!

So you see, it seems there's some magic to writing words like these in my blog: "I have found that change does happen eventually, if glacially. Though much fortitude and patience is required."

Because then? It comes suddenly and immediately.

And the reason I believe it's more than just a fluke? This isn't the first time that this has happened.

Two summers ago, I wrote a post, Cruel to be Kind, about trying to teach Jake to successfully buckle himself into the car during summer vacation. I thought vacation time, with no pressing schedule, was the perfect time for a full court press.

In that post I said this: "And even though he doesn't get it today, still looks at me like a scolded puppy when I make him bumble through, I hope in the future he will look back on these times and know that it was as painful for me as for him."

And then, the next day? I got to write THIS post, No Sweat, about how he did it perfectly, all by himself, without prompting, the very next day!

See, Blogging magic! Write about how a process he's in the middle of learning is going to take forever? And Jake successfully masters the thing we've been working on for months or years... overnight.

It doesn't seem to work with Ethan, though. Because I have written that he will eat vegetables "someday, in the distant future" many a time. And he still treats all things green as if they were poison.

Damn!



Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

When Autistic kids get bored...

... there will be blood.

This morning I woke up at 8 AM to a quiet house. Too quiet.

Though a school vacation day, and the kids had been up late the night before, Jacob is usually incapable of sleeping past a rather early point. 7:30 at the outside.

If I'm lucky, I hear him stirring and calling out to me softly, make it into the boys' room to hustle him out of his top bunk and into the living room before Ethan is disturbed.

Otherwise? If I have been sleeping too deeply? I am awakened to the dulcet tones of Ethan stomping into my bedroom wailing "Jakey woke me up TOO EARLYYYYYYYYY, he won't shut up!"

But this morning? Nothing.

Wondering: could it, might it be? I tiptoed into the boys tiny bedroom, very quietly, just in case Jake was actually, truly still asleep.

And was greeted by a very happy boy, extending his hand out to me with something carefully cupped in it. And a bloody grin. And whispering in a loud sotto voce:

"I lost my tooth, Mommy! The tooth fairy is coming. She will give me coins!"

But lo, in his outstretched hand was not just one tooth, but two. I was very confused.

a nice pair of deciduous first molars

Jake had been mentioning a loose tooth for a little while now, as had the dentist at his last, fairly recent visit. But this usually translates into a very wiggly tooth with a lot of complaining a few months down the road, followed by it falling out within a few days.

This was rather unprecedented.

When I'd last given what I thought was the tooth in question a good wiggle (never thinking it might be teeth - plural and bilateral!) it had seemed to be loosening a bit, but nowhere near ready to pop.

But enter a bored kid with an hour to kill quietly in his darkened bedroom and... instant self-dentistry.

Now after I got him into the bathroom, took a good look at where the teeth came from (one from each side, definitely baby teeth, the upper first molars) and got the streaky blood cleaned off his lips, chin and hands, I rushed him into the living room, plopped him in front of the TV, and made a beeline to Mr. Google.

Turns out he was right on time. I knew that after the first, central eight baby teeth come out around age 6-7, there was a bit of a latency period with no loss before the bigger, back baby teeth start to shed. And everywhere I looked that timetable said "9 to 11" for when the next tooth falls. And it is usually these first baby molars, before the canines. Whew!

And examining the teeth, the treasures he had offered up to me with such pride, I saw they they indeed were just the tops of the teeth, the roots clearly eroded by Jake's permanent teeth pushing their way out through the jaw.

Their time may have come too soon, but only by a bit, their last toeholds in Jacob's jaw being no match for his strong, insistent fingers.

Oh, and in case you were wondering why Jacob had to lay, bored, in his bed for about an hour waiting for me to come to him, instead of just getting up and either starting his day or coming to ME?

Autism. A certain intractability and rigidity to lessons learned early in his life.

When Jake was a toddler, and finally capable of getting out of his bed by himself? We told him to wait, and with a monitor on in the room, I always came to him the moment he called out to us, sometimes even before, as I was quite sensitive to the initial sounds of stirring. There was no reason for him to get out, when what he wanted (me!) would come to him.

And for years, I was so glad Jake waited for us. I never had to worry about my autistic boy wandering around the apartment by himself with us asleep. Not that there was much trouble to be gotten into in our place, and Jacob has never (THANK GOD) been an escape artist or bolter.

Even as Jake got a bit older, and I could choose to go back to bed once I'd gotten him set up with breakfast and TV/Computer/DS, steal an extra hour of sleep on the Sunday mornings when Jake arose at 6, it was comforting to know he was not attempting these things on his own.

But now, when Ethan would sleep until 10 AM if he could, when a monitor on in a 9 year-old boys room would be too intrusive, when it would make so much sense for Jake to quietly get himself out of bed and come into my room to get me?

He just won't do it.

He is too entrenched in his habits, his brain telling him: "this is the way it is" in spite of my having said to him EVERY Friday and Saturday night at bedtime, for A YEAR now: "Jakey, when you wake up tomorrow morning, don't lie in bed and call to me, climb down and come GET me, it's OK!"

Nope.

Or rather: not yet. Because I have found that change does happen eventually, if glacially. Though much fortitude and patience is required.

And someday (soon?) he will surprise me by appearing at my bedside of a Sunday morning at 7 AM, ready to start his day.

Hopefully without more teeth in hand.

UPDATE: Looked in his mouth the next morning (upon his proud  reminder announcement: "Mom, I lost my teeth!") to check how the gums were healing and saw the bright white point of a permanent tooth already poking through on one side - so they WERE ready to pop, indeed.


Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

My Tribe: Weirdo Bloggers I Love

Well, anticipating belonging to my children completely, lock-stock-and-barrel style, for this next week of school break, with very little time for my own pursuits (such as reading and writing and thinking) I was sneaking a bit of blog surfing early this morning, as I had trouble getting back to sleep after being awakened by a child with a scary dream.

He's now happily snoozing again, and I have possession of the computer. Score.

So when I landed on the lovely Australian Eden's blog and found this week's theme to be something I could easily connect to, I figured: why not just join in, write a quick, fun post and link up?

That way I might actually get something completed and OUT into the world, as opposed to creating another lovely, important, but perpetually half-written post clogging up my draft queue. OK, then...

This week Eden freaked out a bit about blogging, then reminded herself of how much she loved the other "weirdo bloggers" out there, like herself. (Her words, not mine, but I'll own it.)

And then she asked us: "Who's your favourites?" (Like I said, she's Australian. They go for those British spellings. They also drive on the wrong side of the road, and call garbage "rubbish", too.)

And, thankfully, when she did her post, Eden only picked and wrote about three. Because, really, my list is so long and it is my immediate instinct to try to include everybody and write the "100 wonderful bloggers" post, so nobody gets left out.

But EDEN herself has set the precedent: I have to pick just three. (Because I always follow directions, and do as I'm told, you know. Snort!)

Eden, of course is right up there, but she didn't come on my radar until I met her at BlogHer11 this summer, reading her wonderful Voice of the Year keynote post, and I want to go back further to my (increasingly graying) roots.

So here are three of my long-time "always, must" reads. The women who have gotten me through, on the days when I felt like I was a tribe of one, a singular weirdo, spinning alone in my crazy brain. Reading them made me glow, made me feel part of a shining troop: the order of delighted madwomen, using words to tether ourselves together...

Alexandra of Good Day, Regular People probably needs no introduction, but I'm giving her one anyway. She is one of the most beloved women in the blogosphere and it is easy to see why. Her writing is lovely and truthful, her spirit generous. And she is hysterically funny (but never mean spirited). Best of all, she was my roommate at BlogHer11 and it was the most magical match-up, ever. Also, she also gets the "best commenter" award. A comment from her on any post is a gift. I read it and my heart goes "ping" every. single. time.

Deborah of MaNNaHaTTaMaMMa is someone maybe you haven't read yet? Start now. She is smart, funny, deliciously irreverent, a "two boy" mom like me, and a GREAT writer. I actually got to meet Deborah in person fairly early on, as we were both members of a wonderful New York City Moms Group blog together. We just really clicked. Instant friendship. That she now lives thousands of miles away, in Abu Dhabi, no less? Pains me. But the sting is lessened by being able to read her daily, even if I only get to see her briefly on visits home.

Jean / Stimey of Stimeyland was one of the first Autism-Mom bloggers I connected with on the internet. She was a member of the D.C. sister site to the NYC Moms Group Blog I mentioned above. I loved the way she wrote about her family (3 boys!) and about autism, with love, humor and her super-smart brains. That Jean is also really quirky and has funny & strange obsessions she writes about, too (like her love of mice and all things rodent, for example) makes me love her all the more. She has a tremendous sense of humor about herself and her own imperfections; which makes her perfect in my eyes, of course.

So, to quote Eden again, "I'll stop at three... but there's a gazillion more." 

To read more about how I feel about this beautiful tribe of bloggers, read this guest post I wrote for the lovely Katie at Sluiter Nation. (See, I knew I'd find a way to sneak another wonderful weirdo blogger in here somehow.) 

(And Kris and Adrienne, I have linked to you so many times and referred to you as my bloggy mentors so often in the past, I thought I'd give others a moment in the spotlight today. You know how important you are to me.) 

There you have it, quick and easy, a new post is up - and before the kids have awakened.

Hey, maybe I can even sneak in a shower, too. Here's to hoping that regular showering is among the few "me" pursuits I still get to indulge in this week. (And if you're a local friend here in NYC, I know YOU are, too.)


Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

Just a Friday Scatterfield

Well, it's not Sunday, but I'm feeling all stream-of-consciousness-y anyway; it's not Monday, but I am happily, simply being me; it's not Tuesday, but I want to just. write.

So I'm going to go for it. You'll bear with me, right? OK, then, spinning the brain cells and seeing where they land...

What a week it has been. Not the week I planned to have, for sure.

Nobody plans on getting a letter sent home in their kid's school backpack telling them that a teacher's aide in the school has been arrested for abusing a child there last week. (No, NOT my son, thank goodness.)

Nobody plans on being sick as dog and dizzy as a dervish for three straight days running.

Nobody plans on spending most of their one non-ill day at a Social Security office, trying to straighten out their elderly mother's paperwork, only to find out that everything the people on the phone had told them they needed was wrong, and they have to go home and get a whole OTHER set of documents and come back to try again next week.  

But, as we used to tell the kids, sometimes, you just get what you get, so why get upset?

And hanging out in the Social Security office wasn't a total loss. We got to be entertained by a very cheesy video about filing for retirement, starring Patty Duke and George Takei. Don't believe me? Here's a bit of print support material:

Boldly going out to pasture, and looking just so damn happy about it.

And you know? Right now at this very moment (wait, hold your breath, it may not last long) I miraculously feel happier than I have felt in a long time. And for absolutely no justifiable reason.

Maybe it's the lift that comes from finally feeling physically a bit better, near human-like, even, after days of dregs-living, ass-dragging, simian-reductive misery. One of those viruses that get into your middle ear and knock your gyroscope all wobbly, so any motion sets off the dizzies and horizontal is the only way to go.

Maybe it was the lasting glow from attending Ethan's "Colonial Stories" class publishing party this morning. Ethan's essay on colonial entertainments was fun and lovely, and I learned what the Scrabble word "Quoits" means, again. The way too delicious homemade pumpkin bread may have helped, too.

Maybe it was the wind scouring the sky clear of clouds so the golden light of day's end washed over the city, turning cold stone buildings into fiery fairy castles.

They say a strong wind will blow the aura right off your body, so maybe I was scrubbed clean too, maybe it blew the negativity clear off me along with the shredded plastic bags that danced before us as Jake and I walked along Riverside Drive, holding onto our hats.

"The wind! The wind, Mommy!" he exclaimed, still, in his glorious innocence, excited and surprised by nature.

Me? I'm excited and surprised by this serendipitous happiness; hoping to waft on these upward breezes, as long as they blow.

Long may they blow.

I'm linking up to Maxabella's I'm grateful for... because, well, I am feeling grateful.

Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

First Love, Lost

"I feel so empty" Ethan wails, sobs racking his lithe body. "I will never, EVER be happy again."

"Oh, babe, I know. Loss hurts. But there will be others, really, you have to believe that." I try to soothe with my feeble, old, mom-wisdom.

"No, not like this one, it will never be the same, it was PERFECT. My first!" Ethan is the picture of abject misery, poster child for a broken heart. So deeply teenagerish, how could he only be nine?

"I know honey, you are sad and disappointed. this hurts, this sucks." I am doing this by the book: first the empathy and mirroring, then the (as yet futile) attempt to incite perspective. 

"I hate her, I hate her, she was so wrong to do this, she needs to pay!"

I want to join him in his wrath, want to rain down fire upon the person responsible for my son's pain and loss, his inconsolable sadness. But I know it is my job to steer him clear of these dark waters, to be the cooler head at the table.

"Nothing lasts forever, honey."

"But this was my first, it was PERFECT."

"Yes, babe, it seems that way now, but you WILL be able to love another, I'm sure."

"Nooooooo! No basketball will ever be the same, that one was THE ONE!"

Yes.

We're talking about my son's first, dearly beloved full size basketball, a Wilson; the one he got this past spring, almost a year ago now, carried around with him nearly every day of his life, ever since.

His one true love.

What, did you really think we were talking about a girl?

Please. He's only nine.

And yet, the feelings, the words? A lost first love, for sure.

Startling in their intensity, but then my son is, ever, intense.

And now, you may be wondering how did his life-love, his perfect first ball disappear?  

What happened was this:

In the schoolyard that morning, waiting for the teachers to emerge and ferry their charges to classrooms, A Rule was broken. While balls may be played with in the yard at pick-up time, morning line-up time needs to be more orderly, less chaotic, so balls must be stowed or held, quiescent in still hands. Otherwise, temporary confiscation is the penalty.

But 9 year-olds are 9 year-olds and the sight of an unoccupied ball drives them to frenzy. They often get played with. Even if Ethan is trying to be obedient, a friend of his will come up, knock the ball out of his hands, and start to toss it about. Cries of protest will go unheeded. Fun will ensue.

But, it must be said, regular reminder letters sent from the Assistant Principal to the contrary. enforcement of such rule is lax, haphazard and spotty. And in all the years of ball-carrying, Ethan had never suffered a confiscation until now.

And thus he wasn't quite sure of the way of it: who actually held the ball, and how and when could he ask for it back.

When I arrived that evening to pick Ethan up from afterschool (with Jacob in tow this day, of course, just to complicate matters), I found a wide eyed Ethan with trembling lip, telling me that no one could find his ball, nor had any idea where it was.

Sure I could quickly resolve this, we began to investigate. We chased a lot of wild geese, up and down the stairs of the school, Ethan growing ever and ever more despondent with each dead end.

Finally, we spoke to the principal, who was still in the main office, and she suggested it was best to throw in the towel for the night, resume investigations during school hours the next day, when the confiscating aide (the "She" of Ethan's vowed vengeance) would be present.

But then, on our way out the door, someone confided in us that it's not the first time a ball has gone missing and that we shouldn't get our hopes up, it was likely gone.

And thus started the full on breaking of Ethan's heart.

And it did not help, in any way shape or form, that Jacob was with us that night, as Ethan howled out his pain on the sidewalk. Because Jake was being Jake: excited and engaged by Ethan's sadness and upsetness, alternating between empathy and laughing delight. Both reactions exceedingly annoying to his brother.

Not only was Jacob enjoying Ethan's big emotions, he was also narrating them. Loudly.

Nothing a nine year-old boy wants to hear when he is trying to keep it together, in his autistic brother's piercing voice: "Ethan is CRYING, Mom! (big giggle) Ethan is SAD!"

And Jake's attempts at "help" even worse: "Take a DEEP breath Ethan! Calm down, Ethan! It's OK Ethan!" Yikes!

Eventually, there was calmness. Bargains were made. In spite of the late hour and still as yet unfed children, we trudged to the nearby Models to see if we could purchase a replacement ball only to find nary a Wilson in a sea of Spaldings and Nikes.

Then we found out that, well, yeah, Ethan's true love WAS a super special, only rarely available model, and it had been a special purchase at the time we'd gotten it.

A different ball was finally deemed acceptable and purchased. Back home Ethan's equilibrium returned, with only occasional declarations of "I still feel empty" interspersed with evening business as usual.

And it all blew over in a few days. (Especially as the original ball was eventually located at the school.)

But I have to say the reaction, the extreme over-reaction? Did give me pause. Not one to let things roll off his back, he feels deeply, this boy of mine.

And I know this is just a slim preview of what is coming, the first actual girl to break his heart. The earth will quake, a lake of tears will be shed, I have not the slightest doubt. And I will be sorely pressed to control my urge to clock her one.

And then, this, really gave me pause:

When I had tried to console him with the idea that it could be worse, that his ball could have rolled into the street and been squashed dead, absolutely gone forever? He countered that THAT would actually have been better, a clean break.

And added that a big part of his pain was in the knowing that: "My ball is out there, but someone else is playing with it. It still exists, my perfect ball, but NOT for me. Someone else gets its perfect bounce, gets to shoot hoops with it. I just HATE thinking of MY ball in someone else's hands."

Hmmm... just change "it" to "her" and... well, it gets kinds creepy.

Time for a little talk about what makes healthy relationships.

I want to make sure he really understands that the "better dead than in someone else's hands" concept is NOT okay when applied to human beings. Capiche? 

So, on that romantic note: Happy Valentine's Day folks!

(Yes, this is my Valentine's post. I know it's a day late. I have a bad cold & feel like crap. At least it's about love. Unlike last year, when I wrote Not a Valentine's Day Post)


Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

SOC Sunday: Boys Being Boys

It's a cold, windy Sunday, here in New York. Time to curl up with a warm computer, open up my brain, and spew forth.

@@@@@@@

 

Walking down the street yesterday with the full family plus a friend of Ethan's. we fell into a fairly usual configuration: Dan and I side by side talking, Jake holding my hand on the other side, (occasionally kissing my arm), and Ethan and his friend Pete whirling like dervishes up and down the sidewalk.

They were pouncing and springing, sprinting up the steps of brownstones and leaping down, jumping onto each others backs like clumsy ninja, wrestling and brandishing invisible swords - although today, as we had just emerged from the 3D re-release of Star Wars: The Phantom Menace, it was light sabers.

I'd like to say it was the combined influence of the movie and the chocolate milk boost from the lunch we had just eaten, but actually, no, this was par for the course. This is how Ethan "walks" down the street with his friends. 

And then I usually become "that mom" the one yelling at her kid from half a block away "Look out! Pay attention to the other people! Don't bump into that baby/old lady/man in a wheelchair!" And apologizing profusely to my fellow sidewalk users.

Yesterday we wisely removed ourselves from Broadway's Saturday swelled crowds immmediately and were headed west to Riverside so the boys could "get their ya-yas out" on the park side of the street, cavorting unimpeded by intersections all the way home.

When we were not quite there, while standing at the street corner to cross West End avenue, I heard my husband yell out, seemingly to the air "They're boys, this is what they do."

When I questioned him what THAT was about, he told me that we had been passed by a nicely dressed woman walking with her one perfectly behaved little girl, who'd had a look of abject horror on her face. He really doesn't like to be judged by strangers.

Me? I'm out with the kids a lot more. I've kind of gotten used to it.

Nevertheless, I started running a fantasy in my head of things I might have added to what my husband yelled out, just to taunt the lady - like: "And one of them will be dating your perfect daughter some day!"  or, even darker: "And just think, your daughter will be losing her virginity to one of them someday in the less-diastant-than-you-like-to-think future."

Yes, there are days I'm so glad to have just boys.

Ethan & friend at Riverside Park cannonballs

@@@@@@@

 
New to SOCS?  It’s five minutes of your time and a brain dump.  Want to try it?  Here are the rules…

• Set a timer and write for 5 minutes only.
• Write an intro to the post if you want but don’t edit the post. No proofreading or spell-checking. This is writing in the raw.

You can do it, too!  Click on the picture link and let's hear your 5 minutes of brilliance...

Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

The Burnout Factor at Hopeful Parents

Well, today is the 10th of the month, sort of. (What? Like you've never post-dated a post before. You haven't? OK, my bad.)

In any event, I'm tired. I'm going to bed (finally). But you should head on over to the Hopeful Parents site and read my 19th post there: Burnout Factor

And while I could blather on and on here... Why? Really?

Turning off the spigot.

Nighty-night. See you tomorrow.



Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

10 years ago today...

10 years ago on this day, I was... 15 weeks pregnant with my babies. While other women might be just beginning to show at this point, I, carrying two, was quite past the "Is she pregnant or has she just been drinking a lot of beer?" look, and well into the strangers-rubbing-your-belly-without-asking phase of my pregnancy.

I was recently back from my last ever Sundance film festival, where I had encountered the delightful cumulative effects of "morning" and altitude sickness and thus nearly hurled on James Caan. But I had also had my pregnant belly rubbed for luck by charming actress Julie Benz (Darla of Buffy/Angel & Rita of Dexter) and yes, she asked first.

10 years ago today, I hadn't had my amnio yet, so I was sitting on tenterhooks, not knowing the gender of the two babies I was busy gestating. Boys? Girls? One of each? Waiting, waiting, waiting to find out.

I did know my life going to change, irrevocably and forever very shortly, and was working hard to study up and prepare for it. (Ha!)

One thing I would have been right in the thick of was planning a "minor" apartment renovation, mostly centered on the kitchen & bathroom, trying to make our small space livable with babies. That "3 week" renovation turned into a 3 month job, and nearly left me bringing my babies home from the hospital without a working kitchen.

10 years ago today, I was trying to work a little bit, but not too much, heeding the words of my very cautious, high-risk OB: "This may be your ONE shot at parenthood, don't blow it! Stop working at 25 weeks. Rest for a minimum of 2 hours each day on your left side. Rest. Rest. Rest. And drink plenty of fluids."

I never went to see my OB without having to wait at least an hour, maybe 2, occasionally even 3. She was always apologetic, but I was sanguine. My age, twin pregnancy and fertility status (these were IVF babies) we're what put me into her hands, while so many of her other patients had much more fragile, stressful, troubled pregnancies than I.

She would always say "Sorry, but there was an emergency." And I would always answer "That's OK, I'm just glad that *I* wasn't your emergency." And I always, genuinely, was.

Because me? I was one of the lucky ones: Never put on bed rest. Only developed a host of uncomfortable side effects of pregnancy, none of the dangerous complications. Delivered a pair of healthy seven pound boys at 39 weeks.

10 years ago, I was probably working on the plans for my father's 85th birthday party. My parents were still robustly enjoying an active retirement in Florida back then.

Five years earlier, I had gone down to Sarasota for my Dad's blow-out 80th birthday bash. But March 25th was into my no-fly zone, so my folks were coming up to my home, New York City, for this one and I wanted it to be wonderful. Memorable.

And it was. I rented the Hungarian House social hall for a Sunday brunch. Surprise guests flew in. There was a jazz band. Lots of hugs and laughter. And lox and bagels galore. Perfect.

10 years ago today, I was almost halfway through my pregnancy, poised on the precipice of the biggest game-changing event of my life. Everyone always tells you: "It will never be the same after you have kids."

Some mean that in a kindly way, citing the love and joy that come with creating a family. Others are more cautionary, thinking of years of lost sleep, the further losses of freedom, self, center, intimacy that can happen.

And like every blissfully ignorant pregnant woman I, would nod my head and say, "Yes, I know, I know."  Thinking my observations of my friends families and my mental projections of myself into motherhood had me well prepared.

But you know? (And if you are a parent you DO know, are smiling at my innocent folly.) I hadn't a fucking clue.

10 years ago today, I knew next to nothing about autism or ADD or special needs parenting or neurobiology. When I looked at our families trees, I had no idea these apples would be falling from them.

But that's OK, because if I had known, I don't think I would have had the courage to have children. Blissful ignorance is necessary, if a pregnant lady is to stop worrying and get any sleep at all.

10 years ago today, I probably fell asleep kicked back in the hideous blue rocker-recliner that I had sworn was ONLY in our house until the boys no longer needed to be rocked to sleep, but still squats in the living room to this day.

I dreamed of oceans often during my pregnancy, of waves and seashores and creatures of the deep, swimming and undulating beneath the sparkly blue surface.

10 years ago today, I placed my hands on either side of my rounding belly and thought great things about the tiny twin beings, slowly becoming human inside of me.

Tonight I kiss the sweet, damp, vanilla-shampoo scented heads of my nine year-old sons as I tuck them into their beds, and they drift off to sleep, dreaming their own dreams, and growing into lives of their own shaping.

I'm linking up with Mama Kat who prompted us to start a post with the phrase “Ten years ago on this day, I was…”

I'm also linking up to Maxabella's I'm grateful for... because I am so grateful for my wonderful boys.

Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

A Full Moon for Susan

photo by @Mammaloves aka Amie Adams

Sunday evening, walking out the front doors of the Museum of Natural History as it closed down for the night and they shooed us out of the halls of planetary and earth sciences, as we tore ourselves away from the looming bones of ancient giant lizards, a big, beautiful, near-full moon held court in the deepening blue sky, a gleaming white marble suspended over Central Park.

I stood at the top of the stairs, arrested by its majesty, and refused to walk down the steps until both my sons had stopped and paid homage to its luminous presence.

And I thought of my amazing astrophysicist blog-friend, Susan, of how she has always encouraged us to share the night skies’ magic with our children. And I thought again of HER courage, grace and luminosity as she was currently facing the very endgame of her long battle with metastatic inflammatory breast cancer.

Susan Niebur AKA @WhyMommy

Then last night, with my children eagerly tucking into their supper, I stole a moment at the computer to try to write a post for my 2 year Blogaversary, but instead my eye was caught by something at the top of my sidebar blog-roll: a new post from Toddler Planet titled, simply “Goodbye.”

A lead weight crashed into my heart. “Nooooooooo!” I howled in my mind as I fearfully clicked over and saw that Susan was indeed gone.  I burst into tears, had to calm frightened children and explain.

In that post, her husband, Curt shared the devastating news with the same grace, love, honesty and generosity with which Susan had lived her life; faced her impending death.

The saying "to know her is to love her" is oft used. But I can think of no one that applies to more aptly than to Susan Niebur.

Susan's battle with Inflammatory Breast Cancer, a little known form of the disease that presents without a lump and is often mistaken for mastitis, went on, with ups and downs, for 5 years.  It was very public as she blogged, wrote, and spoke about it; worked with foundations and organizations to  spread awareness and encourage research.

She created Mothers with Cancer to support other mothers with cancer, and also, very practically, she helped to get compression sleeves to women in need, who, like herself, had arm swelling problems since the removal of their vital lymph nodes.

Susan pushed and rallied herself, set aside self pity and made Every. Moment. Count. in a way I had no idea was possible outside fairy-tales. She was no saint, she was a feisty, full of life, flesh and blood woman. And while others would have been consumed by rage about dying young, her attitude was "I don't have time for anger."

She endured the excruciating pain of her disease and its treatments with something that was not stoicism, but rather a fully emotionally present acceptance. She willed herself to push past the pain and exhaustion because every moment that could be salvaged and spent with her children was a moment to be cherished.

She loved her children fiercely, and tenderly. She had, in Curt, a partner who loved and supported her with amazing strength and resilience and patience and fortitude. She had an incredible support system of family and in-laws and friends upon friends who rallied around her. Team WhyMommy stepped in and stepped up.

When it became clear that the battle was lost and nearly over, that it was just the end game to be played out, she faced that too with astounding grace and compassion. COMPASSION as she lay dying, I sincerely doubt I would or could be capable of that. And yet it was just who Susan was.

She was, quite honestly, one of the bravest and most admirable women I have ever had the fortune to know.

And on top of everything else? Susan was an astrophysicist. She was a connector in a field where there is often isolation, awkwardness, the very nerdy field of Astronomy. But even more than that she was a champion of women in the planetary sciences, an encourager of girls to go into science, a wonderful role model.

Most people don't know this about me, but I almost became an astronomer. I loved the courses I took in college, and my teachers there were very encouraging, told me I had "the gift" of understanding astrophysical models. I had loved the stars and astronomy as a child, dragging my mother through the halls of the Hayden Planetarium numerous times. sitting rapt and breathless, quivering with excitement during the planetarium star shows while my Mom took an expensive nap.  But I ended up making other choices. One of the factors driving me from it was the isolation factor.

So Susan was living my discarded dream, joyfully, and I loved and admired her for this, too.

I will think of Susan every time I look into the night sky,

And I am mad, mad, mad that the demon cancer took her. Took her away from her husband and young sons. Too soon, my god, too soon.

We had only met in person once, in the summer of 2010 at the BlogHer conference here in NYC.  At the time I was a blogging newbie, 6 months in and still green behind the ears. Somehow I had a huge group of bloggy connections in the DC moms, and they had come up in en mass, in large part to support Susan who was a BlogHer Voice of the Year keynote speaker that year, as well as my friend Stimey who was on the amazing "Blogging Autism" panel.

Susan in hotel room at BlogHer1o (photo via TeachMama)

I was going out to an event with a member of the DC cadre and we'd had to pop up to her room for something. Susan was there, resting on the bed, slowly getting ready for the evening. She sparkled. We hugged; very carefully, very gently. And there was more overflowing love in that hug than in any 10 full-on bear hugs I have had before or since.

Susan BlogHer10 VOTY Keynote address (photo via TeachMama)

I am eternally grateful we had that moment. I ran into her again and again over the course of the next few days, heard her amazing VOTY address.

Last night I spent the hours after I'd put the boys to bed hunkered down by my computer, refreshing my twitter feed, tuned to the search word: WhyMommy. I read and read and read all the words that were flowing out into the cyberverse from the people whose lives she had touched: from the dear friends in her "real" life in DC, to her close blog friends she would meet up with at conferences, to the thousands who knew her only through reading her blog, but never before commented or exchanged words.

We are a community of mourners. But also a community whose lives are full of more light because she walked among us and spread her light, inspired us in everything she did. 

Please harken to the words of her husband, Curt in his farewell post:

"Please consider furthering Susan’s legacy through a contribution to the Inflammatory Breast Cancer Research Foundation.  Or please choose to make a difference somewhere, anywhere, to anyone."

Also, hug your children tightly, play with them, listen to them with more patience tonight. And know that in doing so you are honoring Susan's legacy, too.

The internet is now FULL of tributes to this amazing woman. Go, read them all, know more about her and how she touched each and every one of us to the core no matter how essentially or tangentially she was actually in our lives.

Tonight, the moon is full at 4:53 PM East Coast time, and I am sad that it shines down upon a world without Susan in it.

I am not ready to say goodbye to her. None of us are. And yet here it is. Time.

I will always remember the love that radiated from her as we hugged hello, and the light that shined from her eyes, always. The honesty and emotion that suffused her words, how she gave of herself fully, every day of her way-too-short life.

Susan thought long and hard as she knew her days were coming to an end, and distilled her philosophy down to these words:

“All that survives after our death are publications and people. So look carefully after the words you write, the thoughts and publications you create, and how you love others. For these are the only things that will remain.”

She is now up there in the firmament, among her beloved stars. And remembered with love here on earth, by a multitude, forever.

Goodbye, Susan, goodbye.

Star trails above Australia (via time-lapse photography), in purple for Susan

Photo credits: Spiral Galaxy by Calar Alto Observatory via NASA, Star Trails by Lincoln Harrison via Pinterest


Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

And we have a winner!

OK, my first ever giveaway (from the Glad / New York Compost Blog Tour I participated in), thanks to handy dandy Mr. Randomnumbergenerator, has a winner. And it is... Amanda. She, the lovely writer of the beautiful blog Last Mom on Earth.

Now, Amanda, all I need is your snailmail address and a lovely green "odour-free" compost pail with good stuff inside (including Glad Compostable Bags to line it with) will be winging its way to you!

And, as I believe you actually live in a house with a YARD, you won't be needing THIS guy from NYCompost:

Thanks, Adam!

to come pick up your compost and bring it to a garden where it can be put to use.

Whew!

Also?

Let me tell you all a secret.

Come closer.

Shhhhhh.

Today is my 2 year blogaversary. I'm trying to write a post about that & get it up  here while it's still Monday the 6th. 

Wish me luck!

UPDATE: I did not write that 2nd Blogaversary post. I came home from shuttling my kids here and there, set them up for supper, sat down at the computer to write it, and found out that my beloved blog-world friend Susan Niebur, @WhyMommy of the blog Toddler Planet had just passed away, finally losing her battle with metastatic inflammatory breast cancer. My heart is wrenched open. She was an amazing woman. A planetary scientist, a loving wife and mother to two small boys. An inspiration, and full of joy, right up to the very end.


Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

SOC Sunday: Missing a Giant

Yup, it's Sunday. Time to take a short tour of my brain. You're welcome.

@@@@@@@

 

If you're in the United States of America and not in a coma, you probably realize today was Superbowl Sunday. I live in New York. Our team was in the damn thing (yeah, they won - whoot!) and yet most of the day I kept forgetting. Because this is New York City and full of artsy-fartsy people and folk who hail from distant lands and all sorts of others that couldn't care less about the whole football thing. (Also sports bars and Times Square full of rabid crazed fans. We co-exist.)

I spent much of the afternoon and evening with my dear Australian friend and her kids. Her son is quite enamored of the British sport that THEY call football & we call soccer. Ethan had wanted to watch the game, not because he cares all that much about the sport but because "all the kids are going to be talking about it at school tomorrow." 

But you know? In that case, he shouldn't have been so obnoxious today and especially not made fun of his brother and the way he cries. Because that? Got him banned from screens for the rest of the day by about noon. (By bedtime that loss-of-screens-privilege had been extended through Tuesday. Yeah, it was one of THOSE Sundays.)

But moments after I declared "That was really unacceptable behavior! You just lost screens for the rest of the day, sir" I wanted to kick myself. Because I had forgotten about the damn Superbowl. I wanted to watch. Not the whole thing, but bits here and there, and certainly the halftime show and the 4th quarter.

And of course I had to be a "good, consistent parent" so couldn't backpedal on the ban. Damn! 

My husband is so not into sports (despite his childhood love of baseball and all things Yankee) was happily off to a work-related dinner tonight. And i am certainly not a big sports fan either. But the Superbowl is special.

And I used to watch it all the time. 

With my Dad. 

Everything I know about sports is because of him. He was an artist and intellectual, but also a true sports fanatic, and of all the sports he loved, it was football he loved the most, and his New York teams: The Jets and The Giants.

He raised me to know the difference between a halfback and a fullback, to quickly eyeball the yards left to a first down at the end of a play, to hold my breath waiting to see if both feet landed inbounds, inside that all-important white line when a catch was made at the field's edge.

Like tonight. He would have loved to see that masterful catch.

I missed the game tonight. And then, hearing triumphant shouts and screams erupting from my neighbors' apartments all around, turning on the TV just as the confetti cannons were going off and everyone was streaming onto the field, I watched a bit of the postgame, saw the highlights replayed, the gatorade upended, the players stroking and kissing that football shaped trophy with all the reverence of my tribe during services, touching tallis fringe to the passing torah, and then to lips.

I heard the gracious, wooden speeches with one ear, but my heart was tuned in to another voice.

"Daddy" I said, quietly, to the empty room. 

"Daddy, we won." And the cat in my lap, oblivious, kept purring as the tears slid down my face. 

I miss him now in a not-every-day way, the commonness of his absence settled in, these nearly two years passed since his passing.  And that last winter, he had slipped so far from the earth by the time he finally departed, I couldn't even rouse him for a game, not even the Superbowl.

I remember so clearly the great Jets of my childhood, the name "Joe Namath" spoken by my Dad with reverence, watching that legendary game, the '69 Superbowl, with him on our old black and white TV.

I wish you had been here with me tonight, Dad. And not the frail, faded old man of your final years (though I love, loved him none the less), but the passionate-about-art, full-of-life middle aged Dad of my childhood. Or the feisty 80 year-old in Sarasota, who was playing tennis and swimming and photographing and dancing with friends and enjoying the hell out of his retirement.

We would have raised a glass of Shiraz together and toasted our Giants. And I probably would have let Ethan watch with us, ban be damned, because your joy at a game well played could not be missed. He should have seen that, shared that.

I wish Ethan and Jake could have known you then, Dad, the full you. At six foot, a giant for your generation. A giant of a man in my heart, always. 

Dad in Florida, 1999

Dad & Me, 1969

@@@@@@@

OK, sorry this wasn't quite a "real" SOC post. It started as one, but when I saw where it was going, I had to turn off the clock, let it spin out to its conclusion. 

And also? Whoop! Whoop! Whoop! We WON! OK, I'll stop gloating now. Sorry Boston, Vermont, & New Hampshire friends.
 
New to SOCS?  It’s five minutes of your time and a brain dump.  Want to try it?  Here are the rules…

• Set a timer and write for 5 minutes only.
• Write an intro to the post if you want but don’t edit the post. No proofreading or spell-checking. This is writing in the raw.

You can do it, too!  Click on the picture link and let's hear your 5 minutes of brilliance...

Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

K is for Kryptonite

K is for Kryptonite.

That stuff that saps Superman’s strength.

Becoming a special needs parent is what launched my superhero career, autism supermom to the rescue.

But there is never the super without the downside. The kryptonite.

And what exactly is MY kryptonite, you ask? The source of my vulnerability?

Good question. I’m not entirely sure. It appears to be my own brain, sabotage from within.

I am tired, weak; feeling so far from any semblance of regular humanness, let alone a super-powered self.

Ever since I turned 50 and my gall bladder went rogue on me, I have been feeling the spiral story of my life headed in the wrong direction, away from the warming glow of our home star and into the gloaming. Hurtling toward night.

And because I have these wonderful children, I don’t give in to it. I still pull on my big girl pants each and every morning and get the essential jobs of mothering done. But it gets harder with each passing day. 

Everything takes longer than it should. Requires more and more of a me that feels increasingly less and less.

I know that somewhere inside me, buried deep, my powers still exist. The shiny diamonds of my joy and strength.

But dispelling the kryptonite, recognizing those green gem-like crystals of doom and sifting them out from all the other, essential minerals in my bedrock…

Well, that’s the task now isn’t it?

That’s the task ahead.

This post has been inspired by and linked up to Jenny Matlock's Alphabe-Thursday writing meme. And yes, I know it's Saturday today, not Thursday. See above mention of how everything takes too long these days. K is also for "kicking my ass" which is what life is doing right now.



Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.

Kinda Wordless Wednesday: Nice Niece

My lovely niece Rachel came to town for a business meeting this week and I got to see her twice - once at home with the kids, and once at my Mother's. How delightful!

Rachel came at bedtime, and Ethan was in a silly mood. Luckily, Rachel is playful and fun as well as intelligent and beautiful!

The next day Rachel and I had a nice coffee together, then we went to see my Mom (her Grandma) and joined her for lunch.

Rachel had a new iPhone and we took some pictures with her camera as well.

Mom was fascinated by the phone/camera concept. Also that these tiny things are computers that can call up the internet. It seems like magic to her.

Rachel had never seen instagram (shocking!) so on the cab back to the west side, I gave her a demonstration, taking and manipulating this photo of her:

I believe a new instagram addict has been born!

Come back soon, lovely niece!


Looking for comments? To read or leave a comment, click on THIS post's title, or HERE, to bring you to the post's page view. Comments should appear below.