Saturday, June 30, 2012

June Round-Up: What I Loved on OTHER People's Blogs

Car by Neil Kramer

Hey I'm actually getting this June Round-Up out on June 30th, the last day of the month, for the first time in, well, forever. Yay me! (Being that I currently have the executive functioning capabilities of a fruit bat, trust me, this is an extraordinary achievement.)

What is this "What I Loved on OTHER People's Blogs" feature, you may ask? Simply my regular monthly round-up of what has caught my eye (and brain, and heart) on the internet.

Plus a bunch of fabulous photos from this month by my friend and favorite intstagram photographer (AND fellow BlogHer 12 Voice of The Year keynote speaker!) Neil Kramer, who also blogs at Citizen of the Month.

Shiny by Neil Kramer

As this round-up rolls 'round, please note a few new faces here, as well as some old familiar (and much beloved) ones:

Tilted Tree by Neil Kramer

An open letter to all parents from a non-parent. from Emelia of Trying to be good

Just Call Me Stalker by  of mom faze

Traffic, Los Angeles by Neil Kramer

Lemons. Lemonade. from Kelly of Mocha Momma

Aspie Like Me: A Diagnosis Story from Jean (Stimey) of Stimeyland 

Doctor Waiting Room HELL by Neil Kramer

sweetland from Heather of The Extraordinary Ordinary

The Success of Love from Adrienne of No Points For Style

Dear So and So: A special post for carers week by Blue Sky of Looking for Blue Sky

Truck Thingamajig by Neil Kramer

the other “S” word from Amy of When Did I Get Like This?

The Language of Special Needs by Mary (the Barnmaven) of Clean Shavings

My Mother, My Daughter by Samantha Irby at The Rumpus

Abandoned Old Movie Theater, Hollywood by Neil Kramer

In the never after by Mir of Woulda Coulda Shoulda

It Only Ends Once by Cate of An Ordinary Life

Catcher by Marinka of Motherhood in NYC at Babble

Lemonade Stand, Los Angeles by Neil Kramer

Transitory Joy by Anna of An Inch of Gray 

Why I Still Blog AND The Goonspoon by Tanis of Attack of the Redneck Mommy
(because I want to end this list on an upbeat high note and loved both these posts)

And that's it for June folks. I hope you enjoy these posts as much as I did.

And also, if your month was like MY month?

Wall, Los Angeles by Neil Kramer

Friday, June 29, 2012

To Heaven and Hell in a day

Ethan & Jake in the Mist Zone

Today was the last day of Jacob's two week break between the end of school-school and the beginning of camp-school (what we call summer school around here so it can feel more like what Ethan does which is capital "C" Camp).

I had planned on having it be a very magical "Mom and me" time for him with special trips and activities, but then things with MY Mom went South and well, I have barely given my poor boy the time of day. Our "big trips" have been to go visit my Mom, first in the hospital and then in the Long Island rehab center.

Jacob doesn't mind of course, he loves to see his Grandma, and in fact, talks about her all the time right now, asks to see pictures of her from our trips. "Let me see Grandma sick" he requests, scrolling through my iPhone for all the recent images of her.

Today though, being the last of the last, I was planning something special. That is until a very loud thunderstorm woke him up irreparably at 5:05 this morning. With Jake out of school and Ethan's camp sporting a 9:30 start time, that meant that he and therefore *I* was up a whopping THREE hours before expected.

And me, seriously under-slept at this point means seriously cranky and no fun at all.

I was seriously cranky and no fun at all.

So instead of a day at a museum and playground, Jake had a day in front of the TV at his drawing table. He got to watch a whole Batman the Animated Series DVD and go though about a quarter ream of paper. He was perfectly happy.

I felt like a crappy parent, but what else is new these days.

We took an exciting trip across town to pick up some medication samples from a doctor for a drug that otherwise costs upwards of $175 a month on our crappy insurance plan, and then exciting trip back to the West Side in time to pick Ethan up from Camp.

It was HOT in New York City today, one of those real deadly summer scorchers we all dread. After pick-up there was a resounding call for lemon ices from the camp canteen so we indulged.

And right near the canteen and shaded sitting area was the "mist zone" - a misty sprinkler you can run through (or stand in) to cool down considerably. It was running full blast today.

Now, in the past, Jacob has had considerable difficulty with getting wet when not in his bathing suit and in a swimming situation (when he is then perfectly happy to spend the day submerged) but that has been changing lately (thank goodness!) and I was curious to see what would happen here.

And indeed, Jacob was seriously interested in cooling down and joining in the fun. What was most amazing was that he observed that many of the other boys had taken off their shirts and he asked if he could take his off, too.

And if you know anything about autism, you'll know how stellar this was, and that I was over the moon. My boy looking to what the other kids are doing and deciding he wants to do things the same way. And then having a great time doing so. (Autism Mom swoon.)

One happy boy

Much fun was had. Ethan was even in a generous spirit towards his brother and played in the mist with him a bit, horsed around under the shade tent.

Yes, that is Jake under that towel
And then? And then? I made the rookie mistake of counting my happiness chickens before they'd hatched. Because walking from camp back to Broadway to catch the bus home, somewhere in the middle of 111th Street, Jacob asked to watch TV when we got home and I did not say "Absolutely yes." I told he we weren't going to talk about TV right now.

Ethan had lost screen time for the rest of the day (don't ask, a third ignoring of my admonishment against doing something) and I didn't want to promise Jake TV right away until I could figure out how to wrangle keeping it away from Ethan at the same time.

And then some combination of the extreme heat and the earliness of the rising and the fickle gods of autism deciding their free pass had expired kicked in. Jake heard a "no" where I had said a "maybe" and he just lost his shit in a way he hasn't for a while.

Screaming crying wailing and shouting, much stomping and rolling around on the sidewalk. Snot pouring out of his nose and mouth and no kleenex or napkin in sight. (Autism Mom sob.)

Ethan stood about a half building away, pretending he didn't know us. He has reached the "age of much embarrassment" about his family, and having an autistic brother in full-on melt-down mode is, I would think, about as top of that list as you can get.

And it went on and on and I realized the idea of him calming down completely before we moved on was moot, so I walked a sniveling and occasionally still sobbing and shouting boy to the corner and we all caught a cab home.

And then it was of course dinnertime, but Jake didn't want me to leave him alone in his bedroom where the meltdown was continuing apace to go to the kitchen and make it (because of course by this time the idea of any TV at all tonight was completely out of the question, and he was all sad about THAT now).

Ethan was hungry and tired and wanting my attention too, and so I had two clingy, wiped-out kids and no screens to mesmerize them into relative calm while I got our meal together.

Eventually dinner was assembled, eaten; baths and showers were taken, pajamas donned. Jake was tucked into bed as early as possible (but not without one more teary mini-melt right as we were singing him to sleep).

And then, Ethan cuddled into me as I read to him from a book I'd been wanting him to try for a while - the first book of Diane Duane's "Young Wizards" series - and I got him hooked. He yelled "Noooooo!" when I put the book down, and picked it up to read himself to sleep a few short minutes later.

After trundling him off to his bed, I sat on the sofa in a deep mom-stupor.

What a day.

And I hear there's another one coming up tomorrow.

Thursday, June 28, 2012

Setting Things Free

It has been mostly heavy here in my little corner of the bloggopshere, so I thought today I would lighten the load with a little picture essay of Jacob doing one of the things he loves best: setting balloons free...

Okay, so it's a white balloon in a white clouded blue sky, but if you look real hard you can spot the distinct little round sphere of balloony white in the photos.

I'm sure this whole thing is also a metaphor for something in my life. But I'm too tired to think of exactly what.

Good night, friends.

More heaviness tomorrow, but today?

Helium balloon light.


Wednesday, June 27, 2012

My Heart, Her Heart

No one ever tells you how hard it's going to be, this caring for an elderly beloved, as you enter the endgame, the last few months, maybe years; this reversal of roles so deep I've really completely forgotten what it was like to have a mother who was my parent and not my child.

She breaks my heart every time I see her and yet it breaks her heart every time I say goodbye and leave. She clings to me like a toddler whose mother is off to work. "Varda, please, don't go!" And then she apologizes because she knows I have other, pressing responsibilities I must rush back to (my "real" children chief among them).

And that hurts even worse, when she quietly sobs out: "You are so good to me, I don't know what I would do without you." Because I know that even my best is not nearly enough. She needs a companion, someone by her side, with her night and day as she was for my father as he went through his rough patches and then those awful, final three months of active dying.

But he's gone now and it's just me. And my heart and time are divided, parceled out to others, too. Not fair, but what it is.

We don't have much time left. She knows that, senses it even though no one has said anything to her directly. It's her memory. She keeps forgetting she has a progressive, terminal heart condition.

Whenever a new doctor listens to her heart and out pops some version of "Wow that's noisy!" (as critical aortic stenosis is wont to be) she explains: "Oh, yes that's my heart murmur, I've had it since I was a little girl."

But it's not, it's this new thing - or relatively new at any rate - on top of that old thing (her sizable mitral valve prolapse) but why tell her again what she's going to forget again in five minutes time? Sometimes the doctor discretely says nothing, but I can always see it on their face.

When I went to see her on Monday she searched my eyes for confirmation as she took my hand and said: "Varda, I'm not doing well, I don't think I have much time left."

I was stuck, pinned to the wall.

I didn't want to lie to her, nor hurt her with the truth, so I evaded, "However much time you have left, Mom, let's enjoy it, and each other." (Lame, lame, lame, but all I could come up with on short notice.)

And I kissed her white curls yet again and hugged her shoulders in that not quite satisfying way that is the only possible hug when someone is in a wheelchair.

I come bringing puzzle books, grandchildren, seltzer, chocolate and my loving presence.  I wish I could clone myself, so I could leave me behind like all the else. But that's just science fiction, a pleasant fantasy.

I come and then I go.

On Monday I left her in the dining room, playing bingo, one old lady in a wheelchair among a small sea of others. I would say "her peers" but she is peerless, my mother.

No one ever tells you.

Just Write

Monday, June 25, 2012

An Autist and an Artist

Jake: "A Bad Guy from Iron Man"
I have been posting images of my son Jake's artwork from time to time here on my blog since he started doing really extraordinary work this past fall.

As I am way too tired to write anything of import today (first day of camp for Ethan - Jake in his 2nd week of no school/no camp vacation - trip out to L.I. with Jake in tow to both see my Mom & meet with her rehab team - there's nothing to eat in the house, so food shopping too) I thought I would fill in the unseemly blank space here and share some of the recent crop.

With all this free time on his hands, he's been busy!

"Bad Guy"
All Jake would tell me about him is that he's a "Bad Guy" and I have no idea which TV show or Movie he's from.

Personally I LOVE all the personality that comes out in the little lines around his mouth. And the sparkle of mischief in those eyes.

It never ceases to amaze me how Jacob manages to capture so much expression and emotion and character in the faces he draws. This would be impressive for ANY not-yet-ten year old boy, but for someone on the autism spectrum?  Truly, mind bogglingly extraordinary.

I love how it goes against the grain of all the common "wisdom" about autistic folks - how they are more interested in objects than people, don't pick up emotions, etc. etc. Because Jacob? Fascinated with other people, and clearly VERY tuned into facial expressions and what they convey.

Like I always say "You meet one person with autism... and you've met ONE person with autism." And Jake is SOME person with autism.  My favorite (but I am clearly prejudiced.)

"Peter Parker"
Jacob says this is Peter Parker - see the bit of spider on his arm that is cut off in this photo - but I think he looks quite a bit more like John Lennon, no?

"Two Face"
"Batman Bad-Guys"
Jacob is so clearly enamored of larger than life characters and stories. He loves drawing both superheros and their nemesises - the "Bad Guys."

"Harry Potter"
We've been having a bit of a Harry Potter film festival in the house this past week, as that's what Jake's been asking for, and I don't mind a bit as I have loved the books and enjoyed the films. This is definitely Harry from Book Seven, roughed up a bit and covered in either mud or blood - Jake was not quite clear on which - or both.

We haven't been watching in chronological order, but rather jumping around as Jake requests one or another specific film with a logic his own that I am not questioning, but rather letting dictate our viewing habits.  He has been commenting on Harry's maturation over the course of the series, going from asking "Is Harry a boy or a man?" to stating "Harry is a boy AND a man!" as he understands the films encompass some years of his life as he grows from one to another.

I think Jake is also thinking in about himself and how he will grow from a boy to a man someday. He's been talking about his impending birthday a lot, when he will turn TEN!

And with that thought I leave you. More tomorrow on... something. (Whatever my brain can muster.)

Saturday, June 23, 2012

Good News (AKA things that don't suck)

A lovely day for a party in Connecticut
It's been up and down all week, all month, all year, and well, let's just say for some time now we've been riding life's rollercoaster, or if you prefer your metaphors nautical: cast adrift on life's choppy seas, pitching and yawing along.

Today, this very moment, I am feeling well weary of the negative, of feeling I am one popped stitch away from coming apart completely at the seams. So I will, here in my own little bloggy fiefdom, do as the old song says and ac-cen-tu-ate the po-si-tive.

So, hereforth and forthwith are five things from the past week that DIDN'T suck, that might even qualify as good news...

1. Getting Mom out of the hospital and into a nice suburban rehabilitation center was totally the right move. We brought her out to Long Island on Thursday. She ate a hearty amount of lunch, was in good spirits, worked on one of her word puzzle books for the first time in a month.

And when the cute male admissions nurse left the room after saying he needed to come back and do a full body check on her? Her response to me: "He's cute. He can do a body check on me anytime." You go, Mom!

And the reason why we picked this particular rehab center? I have been very (what's the diplomatic word here?)... disenchanted with the rehab options in NYC. And then, it turns out that my Aunt Eva, my mother's sister-in-law is currently also a short-term rehab resident at this facility, which is a mere mile from her home. Which means my Uncle Walter, my Mother's brother, visits daily.

And now that my Mom is ensconced two doors down from my Aunt, my Uncle gets to hang out with BOTH his wife and sister at the same time. Also my doctor cousin Jessie (Walt & Eva's daughter) has declared this facility "definitely nicer than most of these type places." Win-win.

2. Jake had his annual physical on Friday and an appointment with the doctor we see for bio-medical issues on Monday. We're taking his two week hiatus between the end of the school year and the beginning of camp-school (what we call his six week school summer program to make it sound more like what Ethan is doing) to get in all our doctor visits.

Both doctors thought he was doing quite well, were pleased with his relative calm and very impressed by his art work (I showed them samples).

And then when he had to have blood drawn he was pretty good about it. A little anxious beforehand and during, but no screaming. And then he was a little fascinated by the process and talking about it a lot afterward  - "What color was my blood, Mommy?" and "What did the doctor do to my blood, Mommy?"

3. On Friday, during his daily recess basketball game, Ethan made a 3-point shot to win for his team. And the week before, at his afterschool basketball program awards dinner he had been given a special medal for "Best Defensive Player of the Year."

As basketball is his great passion these days, both of these things made him inordinately happy.

4. Jacob is clearly missing school. Three days into his vacation he decided to have Blue Bear and all his other stuffed animals get on the bus and go to school. Once they arrived, he recited the daily schedule to them and then he led them in a bit of "guided reading." They ate lunch and played ball and then went back home to their mommies and daddies. But he told me they would be going back to school the next day! (And they did.)

Part of preparing Blue Bear to "get ready for school" was to get her dressed in some doll clothes I had bought for her last year, when Jake had insisted she get dressed when he did. So the second day of this game, after getting BB on the bus (Jake's pillow), the monkey bus driver drove on to the next pick-up point.

But once there, Jake declared of the penguin and cheetah who were waiting for the bus: "They can't go to school, they're NAKED!" Yes! Social rule understood: No naked school days!

5. We were finally invited to an annual birthday pool party I have been hearing about for years, the social event of the 4th grade boys world at Ethan's school. And today was the absolute perfect day for a drive to Connecticut and a pool barbecue bounce castle trampoline party. (And it was easy to bring Jake along to this, as the hosting family has a SN kid of their own as well, and is particularly lovely and understanding.)

We returned slightly sun kissed, tired and happy. Perfect.


I am not going to mention my worries about Mom's blood pressure being consistently low.

I am not going to talk about how despite it being cute, my mother's level of disinhibition is troubling, indicative of more cognitive changes afoot.

I am not going to share my disheartening realization late last night that last year's bathing suit was not going to fit, necessitating a last minute, early morning run to the full-priced neighborhood swim and lingerie shop where I got to beg them to help me find a suit that hid the fact that I do not have a bathing-suit-worthy body.

I am not going to fret over Ethan's being positive he is going to win a basketball scholarship to Harvard, and therefore doesn't have to put too much effort into his actual schoolwork.

I am not going to bring up my thousand fears and anxieties about Jacob and his future.

Ac-cen-tu-ate the po-si-tive.

Back to kvetching and bemoaning tomorrow.

Wednesday, June 20, 2012

The briefest of updates

Mom continues to be up and down, and in spite of making actual progress with her walking, is now swooning and willfully collapsing while loudly declaring she is going to throw up / have a heart attack / die on the spot.

She fluctuates between being afraid she is dying to wanting to die to being cheerful and rather chipper. Rumor has it she even flirted with a handsome young doctor the other day. (I would assume her teeth were in that morning.) 

Short mom anecdote: taking a 2 minute wheelchair break in the middle of walker-lurching down the hall today, Mom looked up at the two lovely, young, earnest therapists who are accompanying her and asks "Why do I feel so fucking awful?"

"Sylvia" one of them cautioned, "Remember what we said about the cursing?"

Mom: "That it might upset some of the other residents?" They nod, pleased.  Mom takes a perfect thoughtful pause. Then adds: "Fuck 'em."

Tomorrow they transfer her to the sub-acute rehab facility where hopefully an equally earnest and helpful staff will continue to harangue and cajole her into reasonable shape to go home within another few weeks.

Because I don't known how much more of this shit I can take.

Also in honor of Wordless Wednesday (even though I am clearly being wordy) a picture of flowers:

These are from the grounds of place where Ethan goes to summer (day) camp in the city. Taken because I spent some time yesterday running around like a headless chicken and picking up and dropping off overdue paperwork with schools and camps and doctor's offices all over the Upper West Side.

I really have no excuse for the need for this. In sprite of having been a successful and highly organized producer for many years, I apparently now possess the executive functioning skills of your average fruit bat.

Whether this is actual ADD or just my aging peri-menopausal brain remains to be seen.

To quote my eloquent mother: Fuck it!

Tuesday, June 19, 2012

Sometimes I get lucky

Me with Ethan, July 29.2002

My lovely friend Nichole asked me to be a part of a story she was telling over at this week, in which fourteen moms who “beat infertility” share their tales of success along with the baby pictures to prove it.

In spite of wanting children for many years, I started on the path to motherhood very late, being nearly forty when I married my husband (twelve years ago yesterday!). And so we moved quickly into the whole fertility game after only three months of trying the "fun way."

We were very lucky; our first IVF "took."  We have had so many challenges in our lives since, I don't think back to that time all that often, but those two years between our wedding day and the day our boys were born were hard.  I know others have had fertility issues that went on much, much longer. But also I knew that we were racing the clock, and that things could easily have gone the other way for us (in which case we would probably be the parents of a little Chinese girl instead of a pair of boys).

I have nearly completely forgotten all the public tears I quietly shed, when surrounded by heavily pregnant women in my family friendly neighborhood on yet another day the pee stick showed a single forlorn pink line. I sobbed into my pillow more nights than I ever had over any boy or girl from my youthful days of frequent and dramatic heartbreaks.

It is really true though, how the mind smooths over the rough times as you go forward. And my family keeps me way too busy to dwell on the past much.

But when I do think about it, I am astonished at how lucky we are, and perpetually grateful to the wonders of modern reproductive medical science for our boys.

And I am happy and proud to be telling my success story over at SheKnows. And I am in such great company, as so many of the other moms there are my friends from far and wide (Listen to Your Mother, Special Needs parents, twin moms, BlogHer buddies, etc. etc.) and lovely writers, all.

I hope you get a chance to click over and read all the amazing stories there.

And finally, thanks again, Nichole, for including me in this wonderful cohort. And... good luck to you!

Monday, June 18, 2012

Twelve is a very good number

Twelve years ago today it was a Sunday.

Fathers Day Sunday, in fact.

June 18th, 2000

And something really important happened to me.

Happy Anniversary, honey.

In twelve years we've had our ups and downs, as life has certainly tossed some... interesting challenges our way.

We've ridden the waves together through:

A wonderful honeymoon (if you overlook the car accident)


Successful IVF

Full-term twin pregnancy

A "minor" apartment renovation

Having twins

Twin (barely sleeping) newborns

Twin babies

Twin toddlers

Twin pre-schoolers

Twin... (you get the idea)



Kitchen disasters

Birthday dinners



Ongoing experiments in pediatric psychopharmacology


Losing parents (2 in 1 year)

Nieces and Nephews weddings

Countless family Bar and Bat Mitvahs

Too many family funerals



Minor surgeries

Family vacations

Nine kid birthday parties (number 10 coming up soon)

Both of us turning 50 (you first!)

Way too infrequent date nights

Many thousand hugs and kisses.

And so here are two more, a big bloggy hug and kiss to the man who always makes me laugh, my husband Danny.

Happy Anniversary, darling.

And while I can't promise an un-bumpy ride ahead, I can say the bumps are more fun when you land in a friend and parner's lap amidst all the jostling.

So while twelve is a good number?

Let's see how high we can count.

Sunday, June 17, 2012

Of Fathers and Mothers

Mom and Dad in 2006

It's now my third Fathers Day since I lost Dad. But that has barely registered on my internal seismic meter, so immersed am I in taking care of my nearly 90 year-old, now quite frail mother who fell three weeks ago and broke her hip.

As this so often ushers in the beginning of the end for the elderly, like my Mom, I have been swirling in much worry and sadness. I have also been awash in memories of the end of my father's life as the precipitating event of his final demise took place at the same hospital, in some of the same wards, that my mother has resided at in these past three weeks.

Backwards and forwards and timeless hospital time all converging in my mind as I sit and sit.

So while I am not so much feeling the sharp piercing pangs of missing my father this year, the dull ache of his absence suffuses all.

Yesterday my mother seems to have turned a major corner in her recovery. (I say "seems to" because  once or twice I have left her in apparently much better shape and returned the next day to find her slipped way back down again.)

Mom was lucid and rational, present inside her eyes in a way she hasn't been since the fall. My Facebook status posted on the way home:

She was still sad when we talked about my father. "I miss him." she said quietly, tears slowly dripping down her cheeks, after I had shown her some pictures of their life together. She looked up, her eyes seeking mine, "He was my best friend."

I put my arm around her, gently squeeze, kiss the top of her gray head.

"I know mom. He loved you, too. I miss him, too."

It's not much, but it's what I've got.

Thursday, June 14, 2012

The Beauty of My Mother

Mom getting with the program in rehab exercise class
Mom was doing a bit better today. But I don't want to jinx it and tell you all about it quite yet. Besides, it could all slide back pear shaped tomorrow.

OK, here's a little bit - my Facebook status update from today (since I already shared this it can't increase the jinx effect, right?):

But since that's not quite enough for a post, I though I'd supplement it with a little picture show of my mother through the years.

She's looking so dreadful right now; old and worn out and the absolute worst she has ever seemed. (Losing 11 pounds in as many days, and being in near constant discomfort does nothing good for either the body or soul.) So I can't post any pictures of her face in recent days, it's not how she'd want to be seen.

So here are some lovely images of her from the past, both recent and distant. A reminder of the beauty she has always been:

Mom as a five year old flower girl at an Aunt's wedding, 1927

Mom in her early 20s, in the 1940s.  Hubba, hubba!

Mom and me, 1960 (A copy of this sits by her hospital bedside.)

Me, Mom, & Grandma Dunia (her mom), 1974
Mom & Dad on vacation in Jamaica, 1984

Visiting grandbabies in Florida, March 2003

Mom & Dad, March 2006

Mom's birthday, September, 2009

Thanksgiving 2010

Chanukah, 2010

Taking Mom out for a hot cocoa, Fall 2011
Rachel visiting with Mom, February, 2012
Me and Mom on Mother's Day, 2012, just before the fall

Looking at these as a progression, I can so clearly see a definite dip in her spirit, her liveliness between the last two photos. Even though they were only take a few months apart, she looks years older in the last one.

I had noted her decline on Mother's Day, slipping even from when I had seen her just the week before. I had lined up all sorts of doctor visits for that last week in May, in fact. But then she fell. And it has been downhill ever since.

Looking for a direction change soon. (Kuna hura. Or k'neina horah, or however you want to spell it, it's Yiddish for... warding off the evil eye. Not that I'm superstitious or anything. But it just can't hurt, ya know?)