It's my blog's birthday and I'll cry if I want to.

Three years ago today...

My father was still alive, but busy dying...

My mother was still alive, but wearing herself out taking care of my father...

My twin boys were seven years old, and a handful and a half...

And on February 6th, 2010, I sat down and wrote this post:

The Squashed Bologna: a slice of life in the sandwich generation

And thus, this blog was born.

I was hoping I'd get to write a happy "Happy 3rd Blogaversary to me" post this year, but that is clearly not to be, my mother passed just these three weeks on.

I hadn't been able to do it last year either, as Susan Niebur left this world on February 6th, 2012.

I did, at least, get to write a reflective first blogaversary post in 2011 - A Full Year of Bologna. Read again, it seems like so much more than two years ago I wrote all that, three years ago I entered this, the blogging life.

For in these three years I have found an amazing, supportive community, of which I had not even a glimmer of a hint of its existence before I fell headlong into it. Within this, of course, many sub-groups make up my community... the special-needs-parent-bloggers, my fellow LTYM-ers, my former SV Mom's Blog group, my "3rd wave" blogging cohort who began around the same time I did - Alexandra, I'm talking YOU here, baby! - to name just a few.

And this "village" (as well as my incredible circle of "real life" friends & family) has buoyed and sustained me through so much that I have gone through in these three years since.

Right now I'm in the middle of the muddle of my grief, and having a hard time pulling anything from it. In the first few days the words tumbled out of me. I was writing my way through the sorrow, as rough and as raw as ground meat.

I even wrote that "This is the only way I know how to do it."

But then I stopped knowing that, caught up in the paperwork of it all and the thousand stinging nettles of the minutia of my daily life that continued on apace, in spite of the beast howling in my chest, mother-lost.

I am struggling to find my voice again.

Also?

I am bewildered.

Who am I now that I am no longer sandwiched? I have lost a full generation.

I suppose... I suppose I will need to change the name of my blog soon, "Sandwich Generation" no longer properly defining me. (Putting that on the back-burner, not ready to think about it yet.)

But for now here I am, an open-faced sandwich (though still rather squashed), entering my fourth year of doing this, living my life out loud in the inter-web-verse.

Writing my way through the grief, through the sorrow, through the pain and the healing.

Because it's the only way I know how to do it.

Making you laugh today

My husband - who is a big supporter of my writing - has been very busy, and just caught up on a couple of weeks of blog reading. "Good stuff, really good work you've been doing lately." he told me. Then added the caveat: "You might want to post something funny soon."

In other words, it's gotten a wee bit heavy around here lately. Can't argue with that. It's true. And while I do genuinely feel the need to lighten things up on the blog, I can also only work with what I've got, and I know I just don't have a funny post in me right now.

Fortunately for you, I have friends. Funny, funny friends. And it turns out that I, too, am funny when I'm yakking with them on social media (translation for my Luddite friends - murdering time on FaceBook and Twitter).

And one of these cyber-friends (just as real as so-called "real life" friends, don't you believe otherwise) has written a hysterically funny post on "Ways to make your next IEP awesome."

Yes, this is "awesome" with tongue firmly planted in cheek. Because IEP Meetings*? Well, the term "torturesome" comes up much more often than "awesome" -- unless you take these ideas to heart, because then you too could have the funniest IEP meeting ev-ah!

So, go! Read! My friend is Lexi Sweatpants and her blog is Mostly True Stuff.

The post: "Ways to make your next IEP awesome."

And if you look down to the bottom to see the crowd of bloggers who offered up suggestions for this post, who were part of the autism brain trust, as it were, you'll see my name listed. Two of them come from me. Whoo-hoo!

There's a third one I came up with that didn't make it on to the list, and I'll share it with you here, as a little bonus: "Wear an eye patch, and every time they look away switch it to the other eye."  You're welcome.

So go, visit Lexi and read all of the rest and get your laugh on. I promise I'll be funny again here, some time soon. (But probably not tomorrow when I'm telling you about bringing my nephew Simon and his girlfriend to see Mom today.)

*Note: If you don't know what an "IEP" is? (First off, consider yourself incredibly fortunate and know I envy you.) It stands for "Individual Education Plan" - and is basically the contract between the school district and the Special Ed student that spells out what is needed for the child to receive the "free and appropriate education" to which they are entitled as citizens of this nation.

It the sets educational goals for the student - both short term and long term. It specifies the classroom setting - inclusion or specialized classrooms; number of students and/or student-teacher ratios. It outlines the teaching methodologies, accommodations and additional therapies necessary to educate your child. And? It is legally binding.

If a miracle has occurred and you live in a school district that is truly seeking to do right by its needier students, this can be a wonderful thing; written as a true collaboration between the family and knowledgeable educators, creatively coming up with a great blueprint for your kid's education.

And if you have a Special Ed kid, and have sat through an annual IEP meeting, I will pause now for the laughter and/or tears to subside.

Because in 99.9% of the cases I know of, that is not the case, and it becomes instead a battleground wherein the family tries to get what their child needs written into it while the school district tries to eliminate as many services as possible and write the thing so vaguely that you have nothing to hold their feet to the fire with, when they fail to properly educate your child.

A bad IEP meeting resembles nothing so much as negotiations between the White House and the Kremlin at the height of the Cold War. It can get ugly and mean and above all ridiculous. You walk out of a bad IEP meeting ready to go to war because people who do not know your child are planning his education, not with his best interests in mind, but hell bent on their singular goal of saving the school district some money. At the expense of your child, who is just so much collateral damage.

And then you fantasize about doing some of the things listed in Lexi's post, instead of grinding your teeth while trying to smile and appear reasonable. 

OK, I'll shut up now, because I have clearly stopped being the least bit funny, and am at risk of turning into a giant buzz-kill. Mea culpa. Go read Lexi and laugh. G'night.

My Tribe

I am particularly squashed right now.

My mother can no longer walk, so she can't go home to the lovely assisted living community she has been a part of for over two years now. They cannot handle the level of care she now needs.

I am in the midst of transitioning her into a nursing home now (and it is breaking my heart).

So I need to dissolve all but about two suitcases of her entire life. All while my children have a MONTH left until school starts up again, with only a week of non-mom supervision scheduled.

I have so much I want to say here, but no time to write, even though the words are bubbling up inside me, yearning to break free.

I am sure some night soon I will be up way too late, writing anyway, as the bottled up words just cannot stand.

But until then?

I do not want my blog to suffer, lonely and forlorn waiting for my attention. So I have made the decision to bring some of my guest posts back home, especially posts you may have not read, that seem relevant to current circumstances.

As I have just come back from this year's BlogHer conference, I thought I would start with this post, about finding my tribe of bloggers.

And in case any of you are in doubt, this weekend confirmed ever more than before for me: Blog friends ARE real friends, indeed.

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Tribes
 
I am of an age. Older than many other mothers of nine-year-old boys.

I have belonged to many tribes in my 51 years of life on this planet.

In the beginning, obviously, there were the tribes I was born into, happenstance of ancestry and geography: Jews, native New Yorkers.

Then other, subtler tribes, born of the choices my parents made: the tribe of only (sometimes lonely) children, the tribe of Bohemian artists, which I must say was much larger when we lived in Manhattan, shrank to the miniscule when my family moved to the flatlands of Long Island.

Then there are tribes of circumstance and identity that coalesce among school-age children. Mine were of the bookish variety, including the Educated Apes & Pigs – the name the “regular” kids coined for those of us in the Enriched & Accelerated Program, or EAP classes in my elementary school.

We didn’t care what they called us. A group of too-smart-for-their-own-good kids together? Is a very good thing. For two years we with our own, exclusively, and could relax for once. It was glorious.

Then through the tumbled, tumultuous years of adolescence and teenagery, like so many others, I stepped into and out of tribes, trying on and shedding groups and identities; seeking the true and the comfortable, shedding old and too tight skins.

Choir nerd / theater nerd / tech squad / artist / vegetarian / hippie / feminist / punk

Then more of the same in college. But fine tuning it, getting closer to the core, to ones that stuck around for a while:

For a long time I was a radical lesbian-feminist, a member very insular and exclusive group. There was a tremendous sense of identity there, a fierce belonging, a complete subculture and I was one of the tribe, lavender-dipped down to my skin.

And then?

I changed.

It was hard to leave such a tight, interconnected tribe, to step out into the world as just me.

But the inside was evolving and no longer matched the outside. Another skin to shed.

Moving back to New York in my mid-twenties in the mid-eighties, the world was wide. I spun through single gal – married woman – divorcee – married again.

For a while I was in the tribe of the infertile. That one was hard. Rock and a hard place hard.

And then, most transformatively of all, I joyfully, and with many tears, joined the Mom tribe, frequently anointed in pee and poo and leaky breastmilk.

My life, before, ever expanding, contracted for a time into that fiercely insular world of infant parenting: a few blocks bounded by the parks, the nearby stores that sell diapers, teething toys and baby tylenol, the pediatrician’s office, the kid friendly cafes.

I left my square mile infrequently. But within were many other members of my weary tribes: older new mothers and mothers of twins.

In the past few years I have, unfortunately been inducted into tribes not of my own choosing.

Although I have embraced it whole-heartedly and learned of its gifts, joining the tribe of Autism Mothers was quite a shock. Unwelcome at first, to say the least.

And then there’s the Dead Dads Club whose membership card comes, eventually, to all who enter the tribal cave of the elder-care-givers. Once again this was thrust upon me. But it is a weight I bear with love, my 89-year-young mother still my charge.

Which brings me to this, the tribe I find myself among today: the tribe of bloggers, we of the writing kind.

I did not know I had not yet found my people. I sat in the middle of so many belongings, I felt so connected. How could I have suspected there was more?

But then one day I transformed my words into little packets of ones and zeroes and pinned them on a virtual page I called my own.

I had no idea what I was doing.

I just needed to shout into the wilderness, to hear my own voice amidst the cacophony of special needs children and dying parents.

I wrote and wrote.

And then I began to read.

And then I joined a blogging community. Or two. A group blog. A conference.

And one day I realized: my ghostly, virtual friends were as real and important as my flesh and blood friends.

And that I was Blogger.

That this was my true tribe.

And that it took me fifty years, but I had found my people, oversharers all, and come home.

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 To read my post as it appeared initially in October 2011, go here to my friend Katie's blog Sluiter Nation.

First Thoughts on BlogHer '12

Me reading "Holding Hands" as a VOTY at BlogHer12*

It is now two days since I've come back from the overwhelming, awesome, non-stop whirlwind that was the BlogHer12 conference (and yes, I know it was in NYC, my home town and I didn't officially "go away" as I slept in my own bed every night, yet still I was away from my regular life) and I have yet to have a moment to organize my thoughts on the matter, craft a carefully thought out response.

But this year, damn it, I am determined to not go down my usual rabbit hole of over-rumination, of having to have everything thoroughly digested before I wax forth on the subject. In other words, I'm going to get a post up about BlogHer before the week is out!

Even though I haven't uploaded all my photos yet! Even though I don't know exactly what I want to say about it yet! Even though my brain hasn't settled down one iota yet! Squirrel! Shiny! Where was I? Oh, yeah...

So herein find... not a deep thinking piece of any sort, but rather, what pops out as I whirl through thoughts of the last few days, kind of like the wispy pink threads that are spit out of the core of a cotton candy machine, once it heats up and spins up to speed.

So I now offer up here a few spun sugar thought tendrils that I have caught on the white paper cone I am desperately trying to properly twirl through the bowl of my mind; picking up the feathery wisps and gathering together into something of mass.

(And have I mentioned I am abysmally bad at the actual cotton candy making in real life, having signed Ethan's 4th grade class up for this particular booth at his school's spring fair this year? I thought it would be easy - ha! It requires a certain sort of coordinated dexterity and speed that are currently beyond me. I kept making a mess of things. A sweet, sticky mess. I wish someone had taken a picture of me as I finished my turn at the booth covered in cotton candy bits; looking like I'd gone punk with pink and lavender strands strewn throughout my hair.)

But back to BlogHer (see, my mind, it wanders) here's some nibbles, full meal to come later...

It start and ends with the people, because that's why I'm really there: seeing my Twitter stream and Facebook feeds come to life, getting to engage in face to face conversations with people I already felt intimate with online was, once again, both extraordinary and joyful.

Thursday's Health Minder Day was especially important to me because I was doing the special needs parenting track, and these, THESE were my people. The ones I NEEDED to see, to embrace, to laugh with.

This year, other than Thursday, I went to less panels than any other year, and certainly less than I'd initially planned. Why?

Yeah. 

I WAS READING FRIDAY AFTERNOON.

And that kind of took up a looooooooot of brainspace until it was over. And then I was a bit of a limp noodle for the rest of the conference, afterward.

I had snagged a fortuitous invite (thanks Holly) to a fabulous offsite event organized by Beth and hosted by Liz, where I ran into a host of friends I'd wanted to meet up with and got my picture taken with Kristin Davis:

I'm sure Kristin Davis so wishes she had curly hair like the rest of us!

I also learned all about Zarbee’s all natural honey based cough products. And? It was the perfect thing to keep me busy and distract me from what was coming up next...

Me, reading.**

I did it!

I took the stage and read my post "Holding Hands" as a "Voice of the Year" keynote speaker. I was number fourteen of fifteen readers, and as I listened to the others read before me, sharing their words with the most supportive and accepting audience possible, I actually grew calmer instead of more nervous, as I'd feared.

Standing at the podium I did indeed feel all those who had been there before, standing beside me in spirit. And not just this year's speakers but all five years of Voices, none more so than Susan Niebur, the amazing "Why Mommy" who passed away this past winter after a fierce battle with metastatic inflammatory breast cancer.

Hearing HER read on this selfsame stage two years ago at BlogHer 10 was the absolute highlight of that year, and to me this will always be Susan's stage.

It gave me strength as I read my post about my very elderly mother, who is currently in a much more frail, vulnerable and sad place than when I had written my essay the previous spring. I had been afraid I was going to break down and cry. But i got through it by staying in the moment, feeling the audience, so full of friends and well wishers, right there with me.

And then Shari, the last Voice of this Year, read a completely hysterical essay that had me, and everyone in the room, nearly peeing ourselves with laughter.

My lovely friend Shari, reading

And then there were parties, hotel bar conversations, then Saturday, right, Saturday I... I don't even remember what I did on Saturday (limp noodle, remember). Oh, I did time in the Serenity Suite being and helping others be serene. So serene in fact that I fell asleep a bit, sitting upright too. (And Heather and Ellie, being with you there, one of the heartlights of my weekend.)

Truly time for bed now, I'm getting sloppy, happy-lovey here, and I'm stone cold sober. In fact I had all of ONE drink at BlogHer, some ghastly (but effective) concoction at the Aiming Low party. 

So... Everyone was beautiful, I loved you all (even those of you who stepped on my feet whilst dancing to the overloud shitty music) and if I didn't drop your name in this post tonight, that's just because I'm saving you up for my NEXT BlogHer '12 post-mortem post, wherein I will tell all.

Ok, not quite all.

Because what happens at BlogHer stays at BlogHer... well, except for the 4,000 posts being written about it. Oops! Bad place to misbehave (so glad I didn't).


*photo: Jean Stimey Winegardner
**photo: Holly Rosen Fink 

Lost Stories of BlogHer11: Rooming with Royalty and a TV Star

Me with my BlogHer11 Roomies: Alexandra & Shari

Well, it's the DAY BEFORE BlogHer12 begins, and I have just realized that I have an unpublished post from last summer's BlogHer11 still sitting in my "zombie files" - where posts that I began and never finished, but to which I'm too attached to just leave for dead, sit and wait for resurrection...

OK, don't laugh, here it is: my final BlogHer11 wrap-up post. And only 364 days after the actual event.

Once again, I’m late to the party; very, very late. Everyone put up their “seriously folks, this is my very last post about BlogHer11” post in late August, about the time I put up my FIRST one. But here's my little secret: if you're late enough you can be early.

So really, this isn't a ridiculously late BH11 post, it's another pre-BH12 post. Voila!

Part of it is that I’m just not a quick digester, I like to ruminate (sorry about the visceral image that metaphor may conjure up). And then there’s, you know, my crazy life. Oh, and did I mention I have ADD. Bad. Yeah, that might be part of it too.

Because I STARTED writing this post on the plane home from BlogHer11 in early August. Last August.

And now I'm finishing it the night before BlogHer 12 kicks off here in my own New York City. One whole year later. (Note to self: work on this ADD thing, OK? Sheesh!)

So....

First of all, I was THERE, at BlogHer11. (And at first I typo-ed that as “BlogHer111” and amused myself by thinking while fixing it, “no that’s not for another 100 years yet.” Now wouldn’t it be something if it were still going on then? Although what that would look like? What media will exist in 2111? I have no idea. So exponential is the rate of technological evolution and advancement at this point, it renders this inquiry mind-bogglingly unimaginable.)

Yes, I actually flew across the country and was immersed up to my elbows in all things Bloggy, at the biggest women’s blogging convention EVER. But, oddly enough, without either the physical or mental capacity to write anything. Oh, I made sure my SN Sibling Saturdays guest post went up (by putting in significant 2 AM time at the hotel’s rent-a-computers center). But other than that? Nada.

And then I came home to the then nine year-old twins, 24/7. And the Autism. And the ADD. And two weeks worth of everyone’s laundry. And I could go on, but I'll spare you.

So I went to BlogHer11, and yes it was terrific, in oh so many ways. I had many tales I could tell, especially about being STYLED by some wonderful ladies. Did I overindulge a bit, were those three days a little over-stuffed? Yes, you might say. But also deeply satisfying.  

And, as always it seems, some of the best parts were unplanned, the result of serendipity or gifts of circumstance; seemingly forced upon me by necessity, but bearing wonderful fruit.

Most importantly, if I could have afforded it, if I hadn’t been doing it on the way-cheap, on a budget of nearly nothing - early bird conference rate, frequent flyer miles airfare, all but one meal free, ridiculously cheap ride to/from airport, etc. etc.? I probably would have stayed in a room alone (a room to myself being a rare-to-never luxury in my life these days). And that would have been a tragedy of epic proportions.

Because, I? Ended up rooming with Royalty and a red-headed TV Star. Oh, yes.

I had booked my room way early FOR ONCE, instead of scrambling at the last minute (usual M.O.) and so I had a much desirable room at the actual conference hotel. I then, eventually (you didn't think I did EVERYTHING on time did you?) set about conjuring up a roommate.

And I got two: the Empress Alexandra of the blog Good Day Regular People, and the lovely Shari, she of the blog: Earth Mother Just Means I'm Dusty. Two very funny women.

Now, pretty much everyone seems to know that Alexandra is also known as "The Empress" due to the royal names of her children and her regal, generous personalty. Alexandra is a blogger much beloved on the internet, and was being wined and dined by many in San Diego, as she was a Voice of the Year speaker.

But did you also know that Shari, the amazing "Dusty" (aka her blog name) is also a reality TV star? Yes, beautiful and funny - what a combo - she recently had her kitchen done over for a reality TV show - and here's her v-log post about it. 

So a merrier band has ne’er been seen in all the world. Truly. We got along famously, like a house on fire. It was like the best parts of being college roommates (heart–to-heart discussions in PJs, honest & hilarious clothing & make-up consultations) without all the other crap (being 18 again and confused & insecure - shudder, shudder).

I had known Shari already in real life, both of us being local members of the sadly defunct Silicon Valley Moms Group Blog. We had bonded over being older moms together, and our love of all things New York City.

Alexandra I had known only online, and I was prepared for a connection, as we had been leaving insightful supportive comments on each others' posts, and tweeting away together for at least a year. But I had no idea how much it would be love at first sight. It was like we had been friends forever.

And she brought me & Shari each this wonderful pendant, just because we let her room with us:

On the back: Super Mom, Super Busy, Super Tired

They were the best roommates EVER. And did not hate me when my husband rang my cell phone at 3 AM local time, waking EVERYONE up, to ask where our son's lunch box might be. (Guess who usually does mornings with the boys?)
 
Last year, Alexandra was a VOTY reader and this year, Shari and I BOTH are. I think maybe some of Alexandra's sparkly magic, filled the room and cast its glow upon on us while we all slept.

I so look forward to seeing them both again this year, hugging them and riding off into the sunset together... or maybe just cruising the Expo hall in search of Dove bars and a good laugh.

Talismans and Distractions

A pendant from my friend, hanging from Mom's beads

It takes a lot to get though a day in the hospital with a loved one.

And thus, even though I am, for the most part, a rational being, not terribly prone to magical thinking, I am employing a lot of talismans. And distractions.

Talismans for comfort, and to indulge that small part of me who still clings to magic. Because... why not? What could it hurt?

And distractions because I would like to retrain to my last shreds of sanity. And those dreadful few days in the ICU, sitting in the preternaturally noisy hush, watching a machine breathe for my mom? Were whatever is the polar opposite of awesome. Hence the books, magazines, snacks, telephone, and screens large and small.

The talismans? Jewelry, most of it given to me by dear friends, that I can see, touch; feel giving me strength as I sit. And wait.

First a bracelet of faceted stones from my friend Rachel who lost her wonderful parents way too soon. As their only child capable of caring for them (her brother is autistic), she knows more than any other close friend, what it means to be a caretaking daughter.

Then a wonderful necklace made up from a "Super Mom" pendant my dear Empress Alexandra gave me last year when she was my roommate at BlogHer, strung on beads that were once my mom's. Purple beads, our favorite color.

Finally another bracelet: sparkly plum-colored glass beads, with a flattened silvery bean in the middle, a perfect worry stone conveniently encircling on my wrist. This is one of sixteen nearly identical bracelets.

I gave one to each of my fellow Listen to Your Mother NYC cast members just before we began our show. It reminds me of my non-caregiver self, she who moves through the larger world and will do so again, one day soon.

May they work their magic and keep my mother (and me) safe.

Holding Mom's hand again

As for the much needed distractions: I played a lot of games on my iPhone. A million thanks to my Scramble and Words-With-Friends friends.

I brought with me about the only two books I could tolerate in this situation: Let's Pretend This Never Happened by Jenny Lawson (The Bloggess) and Rosanne Cash's Composed; both memoirs, by the way, as that's how I roll these days. And also? I have meaningful connections to each of these authors, and somehow that made me want their words with me, let me feel like I was sitting with a friend, not a stranger, as I was reading them (or in the case of Rosanne, re-reading).

And hearing their words in THEIR voices inside my head as I read, instead of my own, also makes me feel less alone.

Jenny's book is with me because it is hysterically funny and also raw and real at the same time. And I think reading a book by someone more neurotic and over-the-top than me makes me feel calm and together in comparison. I know Jenny, have hung out with her at blog conferences (she's in that funny category of fond acquaintances who feel like close friends to me because I am privy to their innermost thoughts via reading their blogs) and have given and received numerous hugs from her.

She is a generous and compassionate woman, just the right person to sit with me by my mother's bedside. (She also gave my blog its first big boost by linking to my From Autist to Artist" post in one of her Sunday wrap-ups two years ago, and for that I am forever grateful.)

As to my connection with Rosanne, it is more tangential and tenuous, but I still feel it. Besides the fact that my sort-of-step brother (it's complicated) has toured with her band at times, and that I am friendly with a couple of friends of hers, we also met face to face once. Her book was actually released ON my 50th birthday and I chose to go to a reading/performance/signing that night. 

As someone who has gone through the illnesses and the loss of so many of her loved ones, and written about it so soulfully and eloquently, I have found much comfort in reading her book yet again this week.

And Jenny and Rosanne are both Twitter friends. Which is the perfect lead in to my final distraction, which is also so much more than a distraction, is actually a tremendous support and source of strength. And that is social media.

Through Twitter and Facebook (and this blog) I have never felt alone on this journey with my mom, not even for a moment, not even in those darkest hours when her strength was at a nadir, and I thought I might lose her.

Finally, if you're here for an actual update on Mom's actual condition: As of today, Thursday, she is much improved. My brother (her step-son) Bruce came in yesterday to lend support, and he took the evening shift, so I could pick up my kids, have a family dinner. 

Yesterday afternoon, Mom moved from ICU to a step-down unit, and, if all continues to go according to plan, will be in a regular "medicine bed" tomorrow and then on to rehab, working on walking again. Because she still has that broken hip, remember?

So there will be a lot more hospital days in her and my future. But with the right talismans and distractions  - and my wonderful community of friends and family, both physical and virtual - I will make it through.

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.)


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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


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I'm a (Guest) Star

If yesterday I sent you all over the web to read other people's words? Well, today I'm sending you elsewhere to read some of MINE.

That's right, the lovely Alison of Mama Wants This! has invited me to be this week's Guest Star interviewee.  She asked, I answered.

So if you want to hear me out on such burning issues as what I love most about being a mom, my favorite time of day, and the color of my underwear (no, she didn't ask that last one, but I'll tell you anyway, as a bonus - purple of course. You're welcome.) head over to Alison's joint today. Clink on the Guest Star logo above, or this link here: 

Guest Star: Varda of The Squashed Bologna

And then, once you're over there, have a look around and see what Alison has been up to.  Read some other Guest Star posts (I'm in great company). Find out more about Alison's life, over on the other side of the world.

Oh, did I forget to mention that part? One of the loveliest aspects of this whole blogging community thing - I can have a friend like Alison in Malaysia and we can share our lives like we meet for coffee at the local bagelry after school drop off.

So come join me for morning coffee and mom-chat with Alison. Although remember, with the 13 hour time difference, for her, it's a nightcap.

And, Alison? I'm so glad you asked me, I really enjoyed answering your thoughtful questions. Thanks for making me feel like a star.


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...and that's why I'm a Twit

(as in some fool who likes to tweet on Twitter, not an upper-crust British nitwit a la Monty Python.)

Hello, my name is Varda and I am a Twitter addict.

OK, I've been cutting down some lately, as I have recognized that it can get in the way of, well, that (highly over-rated) "real life" stuff. When your son complains that you "Love your computer more than you love us!" you know it's time to scale back a wee bit.

A year and a half ago I didn't know even know what Twitter was. Well, I mean I'd heard of it, but hadn't given it much thought other than as that "wacky thing" some folks do.

Now I can't imagine how I wasted my time before Twitter. It's so efficient, so effective at sucking all the "spare time" out of my day.

But also, truth to tell, useful.

Sometimes I just want to shout into the cave and hear a voice back that is other than my own, echoing. Sometimes I have important things to say to the universe (well, to the approximately 1800 souls in it who follow me, that is), while other times I just want to share my momentary thoughts with at least the illusion that someone is listening.

Like today.

I was sitting in the car waiting for the clock to strike 11 so I could leave (following the arcane rules of the NYC Alternate Side Shuffle... if you live here -- and especially if you own and street-park a car - you understand; and if you don't, be glad you don't have to) my brain just bouncing around in the void.

So I sent out this tweet:

And got this back:

And that's it. Just what I needed. To know I'm not alone.

And then when I got home (car legal, good 'til Monday at 9:30), just checking in, I read this:

and decided to click on over to read her post. It was about aggravation vs. thankfulness and contained this poster:

A timely reminder if ever there was one, as I have been uber-cranky lately. Forgetting to feel grateful. Forgetting all that I am always hammering home to Ethan the complainer, reminding him how lucky he is.

I can hear my own voice yakking away at him, telling him: "The key to happiness is not how MUCH you have but how GRATEFUL you are for whatever you do have" in response to his whining for this or that toy he has seen advertised on TV and MUST HAVE or he will be miserable forever.

I remember when he was little, maybe four, and was being all fussy about his clothes, wanting to wear a very specific something that was dirty in the hamper, declaring every other possible item terrible, I just lost it with him. I was yelling about how spoiled he is, about how in so much of the world kids have only one or two sets of clothing that they own and THAT IS IT. And if they want them clean they have to wash them by hand, every day, maybe even in a river miles from home.

And he got a quivering lip and I thought "OK, maybe I'm laying it on a little thick" but he then said to me with so much compassion: "Oh, Mommy, that is just SO sad. Can I send them some of my clothes?"

And we hugged for a bit, and talked about what we could do to help those less fortunate than ourselves.

And that sweet memory of my son, and remembering to be grateful for all that I have in my life? Thanks to Twitter and the random moment I popped on to read.

That's one of the things I love about it, how it increases the serendipity quotient in my life.

Other things I love: That it is teaching me brevity, how to be more concise, I, who am so in love with words, who easily earns my reputation as "Queen of the run on sentence (with parenthetic clauses)". But Twitter? 140 characters, baby, or you're toast.

Also, I am by nature an eavesdropper, and Twitter was MADE for that, I can listen in on other people's conversations all day to my heart's content, no one the wiser.

I would like to call myself the Queen of Twitter, but really I'm not. I go through phases, I'm in and out. Sometimes I just read and lurk a lot. Mostly that's fun (see above paragraph) but other days I'm feeling down, vulnerable. And then I feel all left out, wonder why no one is @ing me. (Duh, dorkus, you have to jump into the conversation and @ others to be included, REMEMBER?)

The real Queen of Twitter right now (in my humble opinion) is, quite fittingly, my friend Alexandra aka The Empress who tweets as @GDRPempress and writes the blog Good Day, Regular People. She was on of my two wonderful BlogHer11 roommates, and it would be hard to find a lovelier, more gracious woman on all the planet, let alone the interwebs.

Any delightful or vital conversation going on - there she is! She re-tweets like crazy, offers tweets of support and encouragement constantly. Her stream looks like this, all day long: 

Also Alexandra is first on the spot with important messages and alerts. (And yes, it was she who clued me in to Anna See's tragic loss of her son last week.)

So if you're looking to pick up ONE new follow on Twitter - make it Alexandra. (After ME, of course. Do follow me, please! @Squashedmom, of course.)

So yes, when it's not leading me to fritter away my time, I can truly say that Twitter has embiggened my life (is TOO a word, coined on the Simpsons).

So that, ladies and gentlemen, is why I'm (proud to be) a Twit.

(And you can Tweet me, and we can talk all about it, or anything else you want to, in 140 character bursts.)


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Imagining the unimaginable

On Friday I received a chilling set of Twitter messages from my friend Alexandra:

I went, I read, I left a message. Words, just words, but they were all I had. No one could do what we all wanted to: turn back time's hands and undo the undoing of this boy.

I cried and cried for a boy I didn't actually know, the son of a woman I had never met. But whose words I knew. A woman like me: a blogger, a mother.

The mother is Anna See, of the blog An Inch of Gray.

Her son is/was Jack.

12.

Now, forever.

He was playing in his friend's yard. A back yard just a few houses away. Just a typical boy, at play. The creek had breached its banks. He tumbled in, was swept away.

And just like that, a light is snuffed out, a life is gone.

Unimaginable.

But not to me, the mother of an autistic son.

Tragedy is not distant, but in fact stalks me. It's the shadow that walks by my side always, the fear that because of his autism, because he understands the risks of the world so much less than a typical child of his nine years, my son Jacob will be lost.

Swept away.

That chasing a pigeon or ball bounced wrong he will run into the street...

That drawn to water, as so many autistic children are, he will step into a river too rapid, fall into a pool too deep...

That with his friendly, too trusting nature he would walk off with a seemingly kind stranger without a backward glance...

That, strong, willful boy that he is, he will loosen himself from my hand when we are in the ocean and be carried out to sea...

That, large boy that he is, he will walk up to an armed police officer, saying and doing something innocent but seemingly provocative when he is no longer a still cute 9 year-old but a six-foot-plus seeming adult teenager...

That, curious boy that he is, he will take one step too close to a raging, flood-swelled creek, and be swept away.

I know, I quake, that one short twist of fate could put me right into Anna's awful shoes.

So I weep for her, and for all the mothers who have lost their young.

And I hug my sons a little tighter, watch over them a little more hawk-like. Knowing it can never be enough. That the unforeseen moment of disaster can not, by its own nature, be seen, known, avoided.

But still, the instinct is there. The magical thinking: "I can keep my children safe."

But I live with these statistics: Autistic kids are often bolters, runners, escape artists. Approximately half of all autistic children wander, at least once. And the number one cause of death among autistic children that wander? Is drowning.

We like to think this cannot be us, our family. But it can be. In the blink of an eye, a moment's distraction; a step taken into exactly the wrong place at the wrong time.

Anna is an incredible woman, capable of tagging her memorial post for her son "thank you for loving us" as well as "heartbroken."

So go there, now, leave her family your love.

Write your own post for Anna, and link up here, where Kate of The Big Piece of Cake is gathering them all. (And read them.)

Our hearts pull toward Anna's. We offer words of solace knowing they can never fill the empty son-shaped space on this earth.

But they are what we have to offer her.

Our words of love.

Our prayers, from those who pray.

Our sisterhood, no less real because it is digital, ethereal.

As her son is no less real, now that he lives on in memory, in spirit, and on Anna's blog, smiling his incandescent smile.

Beautiful boy.

Forever 12.

(Anna, you and your family are in my heart, tonight and forever.)


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