Scary Stuff

Did you know that October is National Depression Awareness Month?

Well, it was.

And somehow it seems a lot of people I know - both in "real life" and the Bloggosphere - have been struggling with it mightily lately. And writing about it. Which is a good thing (the writing, not the suffering).

Allie Brosh who blogs at Hyperbole and a Half had been silent since May.

Now I know why.

I don't know if anyone has ever before given voice (and image) quite as clearly as to what debilitating depression feels like (while remaining entertaining and funny, she is amazing). Read THIS:

Click to read: Adventures in Depression

Also?

Jenny, the Bloggess: I’m out of the hole.

My friend Stacy (the BlogHer Moms editor): Whither Wisdom

Eva: Taking Leave 

Last winter it was my dear Adrienne: The Sound of the Darkness

And Alice, writing very bravely and honestly about it all: Chasing rabbits

I, myself, come from a family with a long history of melancholy, a tendency towards depression.

My mother has been sad and depressed since my father died.

Many days when I go visit her I find her in asleep in her nightgown, asking "Why bother?" when I attempt to rouse her out of bed.

The fact that she is simultaneously, at core, a cheerful and outgoing as well as a depressed person (not as uncommon as you might think) means that once I shove her out into the world - in her case the group dining room - she perks up and becomes animated, thanks me for making her go to lunch /dinner, lights up and chats with her friends and the staff.

This is clearly a depression with an instigating event - the loss of her mate of 51 years and truly her best friend - but still it's hard to see her ever pulling out of it completely.

Lonely is lonely.

Shake my family tree and all kinds of shit falls out.

My Grandmother - my mother's mother - had a complete breakdown once, when she felt she'd made a very bad business decision; lay on the living room floor unable to function. My then twelve year-old mother had to take up the reins of mothering her younger siblings until Grandma snapped out of it, months later.

My Grandfather - my mother's father - spent the last ten years of his life (and the entirety of mine) in a state mental institution for... you guessed it - severe depression.

My Aunt Marilyn, my mother's baby sister, is nearly catatonic, refusing to eat all but liquid nourishment (too much effort to chew). She has had a smorgasbord of diagnoses thrown at her over the years, but is certainly Bipolar (I) with a walloping dose of paranoia thrown in to boot.

And me?

I was afraid you'd ask that.

I talk about being "up and down" here, but have rarely used the word "depressed." That's in some ways because I'm always still functioning, still rising to the occasion, and many days full clear of the fog.

But in truth I have spent time in my life keeping company with the black dog. Nowhere near the level of some folks I've known, and much more in my younger days; tending toward the weepies when I was in my 20s, but no stranger to depression, nonetheless.

Truth? I'm a writer, have a temperament that tends towards reflection and rumination more than action - in other words, a familiarity with melancholy and low level depression seem to go hand in hand with the job description. 

Lately, it's been creeping up on me, beginning with my surgery last winter, the first in my ridiculously healthy life. I don't talk about it much because I know so many others who have it so much worse, who are deep in the hole, dancing with the demons.

Mine has been the kind that usually doesn't paralyze, but still manages to suck most of the colors out of the day. When I'm dipping in? I call it my "looking at the world through shit-colored glasses" state of mind.

And I can, usually, eventually, rustle up a little perspective. And the internal voices that tell me I suck? I've gotten pretty good at yelling "fuck you, liars!" at them until they shut up. I'm lucky that way, I know. 

So what I think I'm mostly dealing with now is the cumulative stress of raising special needs kids, which is just terribly wearing upon the spirit; which is just a fact of my life.

And since that isn't something that's going to change anytime soon, I expect to be bobbing up and down for a while, too. Maybe even the rest of my life. (Isn't that a cheerful thought now.)

And, like my mother, I am simultaneously an upbeat, outgoing, sociable person at heart, so that drives me to push on and push through. Which, of course, is some days much easier than others.

The nature of the beast.

What is that they say? What does not kill me makes me stronger... or crave chocolate.

Send Chocolate.

Also? Vote for me. M'kay?

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SNSS: Dynamic Family Dynamics

Today's SNSS guest, Kate Coveny Hood blogs at The Big Piece of Cake. And I love going to read her there (even though I get hungry for pastry every time I do) because she is both a lovely writer and a positive force in the universe.

Kate writes about all about her adventures raising a family - 6 and a half year-old Oliver and his 5 year-old boy/girl twin siblings George and Eleanor. Oliver is the "special" child in the family, on the autism spectrum with a PDD-NOS diagnosis. In her blog Kate is smart and funny and reflective in a way that I just love.

While Kate writes about her son Oliver and his issues, her blog doesn't focus on special needs. Rather, it focuses on "family" and sometimes just on "Kate" the PERSON. (Imagine that!)

In fact, it wasn't until I asked Kate to write a guest post for this series that she sat down to actively think about what it means to the twins to have a brother who is different. And here are the results...

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Dynamic Family Dynamics - by Kate Coveney Hood

Often when asked about the level of chaos and drama in my house, I'll say that "I have a special needs child, an explosive child and a girl." That pretty much sums it up.

But let me backtrack a bit.

I have three children - Oliver, my six year old, and George and Eleanor, my five year old twins. And just in case you're wondering - no, that age difference was not planned. Nor was the two-for-one pregnancy. But no matter how dramatic and chaotic it may be, I never lose sight of how lucky I am to have these three entirely unique people in my life - to be able to watch them grow.

Like any other parent, I once looked into my children's newborn faces and dreamed about their futures. I imagined them as happy and healthy kids. So close in age, they would be friends. They would grow up together and then go on to attend college, find careers... have families.

I always knew that they were really just on loan to me. I would raise them, but they would eventually leave to find their own way in the world. And I looked forward to watching it all unfold.

We had some basic expectations for the roles they would play, of course. Oliver would be the big brother, and look out for his not-that-much younger siblings. Eleanor would be a daddy's girl because they all are in my husband's extended family. George would be the middle child - even though he is only a minute older than his sister - and as a loud and demanding infant, he seemed destined to be a handful.

And some of this ended up being true. Eleanor is a shameless daddy's girl and George has taken the term "handful" to a whole new level. But Oliver is not your average, everyday big brother. He is my special needs child.

The twins were born when he was 18 months old. And around that time, it was becoming obvious that he was different from other toddlers. His speech wasn't developing with the lightning speed that I witnessed in other kids. He wasn't as social and trusting. He was more interested in throwing blocks in than he was in using them to build towers.

Years later, after special needs preschool and various therapies, Oliver is sweet, handsome boy with severe sensory processing disorders. He also has an Autism Spectrum label: PDD-NOS (pervasive developmental disorder - not otherwise specified).

The behaviors and challenges that qualify him for a Spectrum label are primarily noticeable in his communication and language skills, but he also has some more subtle problems with motor skills. We've been lucky to find a couple of alternative therapies that have been nothing short of magic as far as I'm concerned. And Oliver is always making progress - moving forward. But it's never fast enough for him to catch up to, let alone keep up with, his peers.

And it's not just other kids his age anymore. Oliver is now officially behind the skill levels of his siblings. Over time, George and Eleanor have become my barometer for what Oliver will hopefully learn how to do.

People are confused by our oldest son because he "looks normal." But they haven't witnessed Oliver's daily struggles with things that have come so naturally to his brother and sister. Like sustaining conversation, understanding the rules in games and making friends. They don't understand why it's George who plays light sabers with the older boys across the street while Oliver plays with Thomas trains in the dirt. It should be the other way around, right?

They also have no idea how incredibly painful this is to watch.

For all of my love for them as individuals - all of my gratitude for their health and happiness - it breaks my heart to see my oldest fade into the background while his younger brother and sister become such stars. To see the babies of the family take over so many of the older sibling roles that should have been Oliver's, by right.

And I know that sounds petty and unfair - to expect that the oldest would automatically be the front man for the band...the leader of the pack. But that's the typical family dynamic, right? And didn't I expect to have a "typical" family? Didn't we all?

So my husband and I have had to put aside some of our new parent dreams and expectations for our children - our family. It was hard. And sometimes I still feel a little sad. I worry.

I worry about the near future when the twins start asking questions about why they can do things that their big brother can't. So far, they haven't. They don't compare our family to others. It seems normal to them that George is the one who complains about Oliver messing up his...whatever it is he's doing (remember - George is my explosive child, and there's always a crisis). Or for Eleanor to act as spokesperson for her big brother when people ask him questions he's not yet developmentally capable of answering.

But as we become less insular and spend more time with the rest of the world at large, it's inevitable that my two younger children will wonder why we're different from other families.

To be perfectly honest, I've avoided thinking about this for a long time. On some level, I've been wishing that Oliver would just become "normal enough." That therapies and IEP reports aside, the kids in our neighborhood - and George and Eleanor - would see him as just another kid. Maybe a little goofy or quirky sometimes - but not so much that he couldn't fly under the radar.

Then maybe someday when Oliver would be capable of engaging in a complex discussion, we could all talk about his personal challenges. Together as a family - with Oliver participating in this conversation about him.

It shouldn't matter, I know. But I just really hate the idea of talking about Oliver to his siblings before I can talk to HIM about everything. I would feel like a betrayal. Like it was now me denying him his right to be the older brother.

I may have to do that someday - but I'm not ready. Not yet.

In a way - these ideas are entirely new for our family. We haven't had to think about them.

So I don't have personal stories to tell about how our children work around the special needs that make Oliver different from other six year olds. As of yet, the twins don't really recognize that Oliver is different. He's just Oliver. And I'm selfishly holding on to that as long as possible with no plan for the future.

Until now, I guess. Until I began writing this and reading about the experiences of other families with "special needs siblings."

I've written numerous posts about Oliver's special needs on my own blog, but this is the first time that I've actually addressed the issue of how those special needs affect his relationships with his siblings. And because I've always taken the Scarlett O'Hara approach of dealing with what I have to today, and leaving the rest for tomorrow - I'm now in uncharted waters.

I love the idea of Oliver being the big brother an taking care of his little brother and sister. But for now, and possibly for a long time (possibly forever) that's not going to be our reality. In a couple of years it may be the younger brother and sister standing between Oliver and bullies on the playground. It's still too soon to tell - but not so far off that I can't imagine that possible future.

Will they stand up for Oliver? I think Eleanor would. As a girl, she has an innate maternal side. She seeks to nurture in a way that her brothers just don't. But George? I don't know about George.

He is so full of enthusiasm for life, that he doesn't always notice other people as he races to grab the brass ring. He means well - but he's a scrapper. He may unwittingly trample Oliver in his efforts to follow the older boys with their war games and skateboard ramps. I just don't know.

But I do know that this is going to be painful at times... and I would be lying if I said I wasn't terrified by the uncertain future. That I didn't wonder how many more of my dreams that future will will steal from me.

But I find great comfort in the fact that some of my dreams are already coming true. My children are happy and healthy. They are friends. They are growing up together. They may or may not all go to college, but each one of them can find a purpose in life - something they can consider their career.

Probably the most important dream I have for them is family. The families I once imagined for them included marriage and children. And right now I have no reason to doubt that this is possible for them. For all of them.

My dream of them all having their own families might actually come true. And it might not. But it doesn't matter because whether they get married or not - have children or not - they will always have each other.

They will always be a family.

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I love how much Kate appreciates and values her son's differences, how she hold the bar high in her expectations for his, and all her childrens' future. Also I love (and am a tad envious of) how much her family functions as a coherent unit, caring about and for each other, enjoying each others company and celebrating their uniqueness. Love.

And now that you have read and fallen in love with Kate too, please follow her home to her blog The Big Piece of Cake. where her tag line reads: "Never settle for a small one, and demand a corner piece with a flower" which I think sums up her wonderful attitude towards life.

Want to get to know her kids better? Start with this loving and funny post about Oliver's lack of love for pants. Then go on to read more loveliness about George and Eleanor.  

Want more? Try this one about her kids' antics, or this one about... pretty much the same, and why they had to lock room doors when they were younger.  Also read this beautiful post about trying to integrate Oliver into an activity with typical kids.

And? If you really want funny? Read this post about her twins birth-day, which includes her water breaking suddenly - WITH sound effects - in a fancy hair salon.

Thank you so much, Kate for sharing your wonderful, very special - and DYNAMIC - family with us here today.


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Slogging Towards Grateful

If asked what words come first to mind about my state these days?

Grateful would not be at the top of the list. Probably not even on the first page.

I'm feeling mostly cranky and overwhelmed again; stress-eating everything in sight and barely sleeping. In a word: swamped. In the muck, stuck.

But also, the tedium of hashing and rehashing that all out again here, serving up a steaming plate of my refried misery for you? Done. Overdone.

I want to be moving on.

Aren't I always yammering on to Ethan about how happiness hangs upon the scales of gratitude not possession?

Time to practice what I preach.

So I will count my blessings instead of listing off my grievances today. (Even though they are many -- chief among them the story of how the hospital tried hard to kill off my mother, the full tale of which will be told when I can do so without being overcome by blind rage.)

Things I am Grateful for:

This week a number of my sons' friends have had step throat -- I am so glad we don't have that here (yet).

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Last week a dear friend's father died quite suddenly, out of the clear blue, while she was traveling with him in India. He was young, vibrant, vital still - 70 - and it was quite a shock to her.

I am so glad that I got to say goodbye to my father, that I got to see him live out the full spate of his years. Even though those last months were so dreadful, we had completed our leave-taking with each other. We had no unfinished business. I am deeply grateful for this.

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For the past two and a half weeks my mother has been in hospital and rehab unit beds, not her own. Unmoored and unhappy, isolated, alone and often confused when I could not be there (and I could not be there every minute, my children needed me, too.)

I am overwhelmingly grateful that she is finally back home, reconnecting with her life.

The whole staff of her assisted living community sought me out to tell me how glad they were to have her back, how much they had missed her. Her friends have brought her flowers, come to visit. 

The three musketeers will ride again!

I am so grateful that her home is a HOME - full of love and comfort.

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I spent most of the day at my mother's trying to sort out the support services for her continued recovery and reintegration and the tangle of medications added & adjusted during her hospital stay.

But tonight? Thanks to a friend for lending a babysitter, my husband and I got to go out on a much needed date, the first in a long time (family and work events don't count).

I am grateful for the simple joys of sharing a movie and some sushi with the man I love.

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Finally: in the past two years Ethan has chosen to be an obscure Pokemon for Halloween. This required MAJOR costume creation efforts from me with MUCH sewing involved. We're talking ears and tails here, people.

This year's costume, while equally elaborate has mostly involved acquisition and ASSEMBLY and not much in the way of sewing.

So I am very, very grateful for the lack of a TAIL in this year's Halloween costume. (And that elf ears can be BOUGHT ready-made on the internet.)

2009 - Lucario - TAIL

2010 - Electabuzz - TAIL

2011 - Link - NO TAIL!

Feeling righteously full of my Grateful now, it's off to bed... busy weekend coming up, so g'night all! (I still have a shield to paint before Monday.)

I'm linking this post up to Maxabella's I'm grateful for... FINALLY.


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Pictureful Wednesday: Boys and Swords

It's that time of year again, Halloween is almost here and costume drama is in the air. This year? Ethan MUST be Link, the legendary warrior from Legend of Zelda.

What the hell is that you ask? You must be old. Like me ;-) (He's a classic Nintendo game character.)

To get in the mood - and shop for weaponry and other medieval claptrap - we attended the Cloister's annual Medieval Festival. 

A castle? Awesome backdrop for swordplay with brothers and found friends. (And yes, in conversation with this family it came out that one of their boys in on the spectrum, too. We are everywhere.)

 

I have been assembling bits of this and that, here and there, for Ethan's Link costume since mid-September. And the almost-done costume got a preview run at NY ComiCon earlier this month, where Cosplay costumers are encouraged.

What the hell is Cosplay you ask?  You must be old. Like me. ;-) (It's fan based Costume Play - very big in Japanese Manga/Anime circles.)

Link arrives at ComiCon

Hanging out with Dad at his booth? Highlight of the show.

Jake? Wanted to spend the whole day talking with R2D2.

The WHOLE day.

Although the AMNH mini-planetarium show was pretty awesome, too.

And if there is a screen, Jake will watch.

No, there was not a single shot in which the boys were not making weird faces. At least I look human.

Ethan's costume was a big hit at the con, and yes, there were actually some folks who wanted to have their picture taken with "Link." And yes, some of them were GIRLS who pretended to swoon in his presence. Ethan had no idea what to do about that. Yet. (Whew!)

Ethan taking this "warrior" thing a tad seriously

When it was all over, walking back toward the center of the city from the western fringes of the Javits Center? We were a roving band of odd characters.  It was lots of fun watching the double takes from ordinary folks who had no idea ComiCon had been in town.

And below, you will find the referent Link character pic from the video game. Not bad so far, if I may say so myself. Yes, I have a shield to build this week.

Jake, on the other hand is content to be Iron Man again! (Yay!)

Except his last year's costume got completely trashed from playing in it all year, so I have to buy ANOTHER one. (Boo!)

And so it goes....

(And as to why I called this "Pictureful" instead of "Wordless" Wednesday? I'm guessing you've figured that out by now.)

As usual, I’m linking up to Wordless / Wordful Wednesdays... at Angry Julie Monday... at 5 Minutes for Mom... at live and love...out loud... at Dagmar*s momsense... at Parenting by Dummies.


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Being Enough Mother, Being Enough Daughter, Being Enough Me

I have felt for a while now that living my life is (more than) a little bit like being on the rack: pulled in opposing directions most all the time.

Sometimes I feel stretchy, like Gumby and that I can handle it; snap right back into shape once the tension lets up. Other days I feel more fragile, afraid parts of me are starting to break off, hoping that starfish-like I can regenerate new limbs as needed.

The forces in action are both ones that I have chosen and those that have been chosen for me.

I have an elderly, widowed mother, who grows more frail of body and mind with each passing month.

My children at nine are nearing an age when normally there would be a big push toward independence. But of course nothing in our lives is normal or typical, for I have one son on the autism spectrum and the other is high maintenance - very bright with a touch of ADD, which, just to spice things up I have realized I have, too.

While this is the pot that is nearly always simmering on my stove, what had brought it all to an over-boil lately is my mother's recent hospitalization that began with a day and night of fun and games in the emergency room.

There had been a bad fall. Bones were broken. Mistakes were made in the hospital that took her from bad to worse. Recovery is glacial. Although my mother is now out of the hospital and in a rehab unit, she needs me still, every day in every way.

As do my children.

One day, sitting by my mother's bedside in the hospital, waiting for her to awaken, confused, in yet another room, I started to write a blogpost that never got finished and has now, of course, lost its timeliness. I would like to share the beginning here though, as it embodies this state I find myself in...

5 Beds in 5 Days, and very little time in my own.

No, this is not THAT sort of post, the fun kind of post with this title I might have written had there been blogs and I been blogging in my 20's. Sorry, folks.

This is, instead, about my mother, still in the hospital, and me feeling hard pressed to be adequately useful to her and to my children these days. And my husband, poor man, I am all but completely useless to him right now; he is pretty much fending for himself until all this insanity dies down.

And then there is me.

Who?

Exactly.

So there it is in a nutshell. No matter what I do I cannot do all that needs doing - for my children, for my mother, for my husband and for myself.

I am just one person.

And so, at this crossroads I have a choice. I can tear myself up feeling inadequate, feeling like I am always less than I need to be, that I can't get anything right.

Or, I can recognize the impossibilities inherent to this situation and simply choose to forgive myself, decide that I do not have to be..

the perfect mother...

the perfect daughter...

the perfect wife (husband is doing spit take at the notion of this I'm sure).

There is no perfect me.

Except, of course, for me.

The me that I just am.

Enough.

Enough mother (my kids know that I love them)

Enough daughter (my mother looks at me with grateful, tear-shining eyes, every moment we are together)

Enough wife (well, I'm working on this one, my dear husband has gotten the short end of the me-stick for a while now)

Enough me.

Someday one of these pressures will ease up a bit.

Until then, I'm just going to have to make do with the rack.

(And how I wish I lived in a Monty-Pythonian universe and was being tortured instead with the soft cushions and the comfy chair.)

I am linking this post up to Be Enough Me Mondays over at the wonderful Just. Be. Enough.

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SOC Sunday: Just. Write.

So, this week I actually got to hang out with the lovely Fadra - who runs & hosts this whole Stream of Consciousness Sunday shindig - at the BlogHer Writers Conference here in NYC.

How could I not do a SOCS post after that? Inconceivable! (Yes, I watched Princess Bride again with my kids last week. So you should hear that last word in your head being rendered by Wallace Shawn. With a lisp.) So here it is:

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I spent all day Friday with my true tribe - writer/bloggers - at the first ever (hopefully becoming annual) BlogHer Writers conference. There was so much useful informatiuon and so many amazing conversations going on all day (and at the cocktail reception the evening before) that my brain feels about to explode.

And I am still digesting most of it. But if there is one message I took away from the conference? It was this:

JUST. FUCKING. WRITE.

And then? Re-write. And trash whatever is not wonderful (even if its 80%) and re-write again. Make it great.

And don't put ALL of it up on your blog. Because if you want to be published elsewhere, to SELL your words, it has to be new & fresh content. So you can't give it all away first.

Also? It helps to have an agent. As in, if you don't have one you are 99% of the time totally screwed. But also? If your writing is good? You will find an agent. When you are READY.

And being ready? means that you have followed the above directives and have an actual COMPLETED book in your hands when you contact them.

For fiction & memoir that is (memoir being narrative and sold / bought like fiction). For non-fiction you "just" need three sample chapters and a kick-ass book proposal.

ANd, to get the attention of an agent?  It helps to have credibility. A track record. Which means articles sold to magazines or stories / essays published in literary journals.

Hmmm, a lot more hard work and commitment than just spewing out a post and slapping it up on the old blog, huh?

Yup! (ANd yeah, other than these Sundays I don't usually just spew, I AM a change-the-word-ten-times-until-I've-got-the-one-I-like-best perfectionist writer. Guilty as charged.)

So I've got a lot to contemplate. Because the instant gratification of writing and posting, being my own publisher? Pretty intoxicating. Works for me so far.

But also? I have a book in me. a few books actually. And I'm thinking they want out....

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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...

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SNSS: Snapshot of Our Life

I am sorry to say, I don't have a SNSS guest for you here, today. There was a schedule mix-up. And then my crazy life...

My mother having been in the hospital for a week, and now in a rehab facility, ended up requiring hours and hours of my time each day, and has left me functioning on bare minimum efficiency (if even that) in the rest of my life.

And then there was the BlogHer Writers conference yesterday, which was wonderful and inspirational, but I didn't really have the time to attend. Even though I did.

All this leads to the matter at hand: I have neither a guest post nor time and brain cells left to write a new one myself. So what I thought I would do is to recycle a post of mine from this past spring that I believe not that many folks got to see... A snapshot of a day in my life with the boys together.

It's not pretty. The post's original title was "Fight Club." Read on:

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I hear the volume increasing, and my stomach tenses. Still, I ignore, stay turned to the task at hand, dinner in the making: skins thinly peeled from slices of ripe-bursting peach, rice steamed to softness.

And then the pitch rises again. And the thuds. And the keening. And the wail. The wail that cannot be ignored: Mooooooooooommmmaaay!

In their bedroom is a tangled mess of snot and confusion. Jacob with glasses awry. Ethan with hands on temples, shrieking “He head butted me, he head butted me!”

Jacob, alternately growling like a caged lion and laughing theatrically, a perfect rendition of a cartoon villain's world-destruction-anticipating cackle. Ethan now lurching at his brother with clenched fists and a growl of his own, “I’m going to kill him!”

And me? I’m in the middle again; sorting, soothing, trying to make sense of the senseless. I don’t even bother asking what or who started it, for these things just start.

Ethan is maddened by this idea, full of indignation and bluster, dead sure of his own absolute blamelessness in the matter. “He’s the worst, the meanest brother in the world! He took my Pikachu, he laughed at me when I tried to take him back!”

I could explain, for the hundred thousand and second time, that there is not the same purposefulness behind Jacob's actions as there would have been had Ethan been the perpetrator, that the motivator is not cruelty.

But why?

Ethan knows his brother has autism. He's never going to be happy about it.

Once again, the physical damage is minimal. The psychic, massive.

Ethan’s anger is a wildfire, burns blue-hot, consumes all in its path. He spits words at Jake through gritted teeth “Do. Not. Laugh. At. Me. Ever. Again!” Which Jacob, of course, cocooned in his autistic obliviousness to much that is normal human discourse, finds hysterical.

Jake love, love, loves his brother brimming full like this, is getting his lasered attention, for once. And just to ratchet up the annoyance factor? Begins to repeat his usual mispronunciation of his brother’s name in his most grating sing-song voice: “Oh, Eeee-fan” giggle “Eeeeee-fan” giggle.

If glares could kill, Ethan would be the only man standing.

Thoughts of dinner temporarily abandoned, separate them I must. Jake to remain in their room, Ethan to come with me into my bedroom; to float in the middle of my big bed, try to find his calm, regain his rudder.

Sponge Bob on the TV providing perfect distraction, I return to the scene of the crime, find Jacob rubbing the spot on his shin that will surely sprout a game-token sized plum splotch by bath time.

Mystery bruises his usual specialty, at least this time I know the culprit: bed-frame.

"Are you Okay, Jake?" I ask.

"Efan was MAD!" he says with glee.

"Yes." I agree, breathe deep, dive into an explanation made as simple as can be, but still fitting the bill. "When you took his toy he got mad. And when you laughed about it he got madder. It's mean to laugh at people when they are mad or sad, Jake. Do you want to be mean?"

And then he's got his contrite face on. The one he pulls up when he knows he's done something wrong, but can't understand for beans precisely what. "No" he answers, fairly sure that this is the right answer, the one that will grant him hugs and cuddles, absolve him of all transgressions.

And it does.

"Come here, honey," I say as he climbs into my lap, my eight year-old, eighty pound toddler.  I put some music on the radio and we sway together for a minute, but stomachs are grumbling and dinner sits, bereft, barely halfway complete.

Ethan's laughter trickles through my bedroom doorway, mood lifted by the magic of television, as I make my way back to the kitchen, to settle once again into the rhythms of cooking.

Then, to pick up the scattered fragments, to shake the jangly shards of our family back into a familiar shape.

Dinnertime.

Let's eat.

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That's all folks. A real guest next week, I promise!

Also? Last week's WONDERFUL SNSS guest post, The Bucket and the Mandrake, inexplicably didn't get any comments. Please remedy that by clicking over, reading and commenting. Thanks! 



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Twenty Two Things

I am 51 years old.

I have done a lot in my life.

But there are things I haven't done.

(Some, thankfully, some, regretfully.)

Here are 22 of them...

(Why 22? No idea. Ask Ree, The Pioneer Woman, who Mama Kat nicked this idea from.)

I have never: 

1.  Sung Karaoke. 

2.  Ridden a camel.

3.  Broken a bone (pinkie toes don’t count).

4.  Been to Australia.

5.  Seen Mount Rushmore.

6.  Gone to Disney (working a conference at the Swan doesn’t count).

7.  Flown to the moon and swung among the stars.

8.  Taken the coast to coast train across Canada.

9.  Taken a photograph of a celebrity.

10.  Faked an orgasm.

11.  Fired a gun.

12.  Eaten Fugu.

13.  Been able to walk in heels without falling on my face.

14.  Seen a purple cow.

15.  Straightened my hair.

16.  Gotten a bikini wax (ouch).

17.  Been on time to any significant event in my life.

18.  Had a “regular” job with benefits.

19.  Dug a ditch.

20.  Seen the green flash of a sunrise on the open sea.

21.  Been as deeply sleep-deprived as I am right now.

22.  Regretted having children, in spite of the above.

I'm linking up with Mama Kat who prompted us to write a post listing 22 things we’ve never done.


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Fuchsia

(Photo from Pinterest via Write on Edge prompt, click for source)

I went to college in New England. Specifically: Western Massachusetts. Amherst. A quintessential New Englandy, uber-collegey college town.

New England exists for Autumn.

The Summers are hotter and more stiflingly humid than you would think, the Springs often mud bogged and shockingly brief. Winters too cold and long, of course; weeks of gray February skies that bind the soul in melancholy.

And then there is Autumn, New England’s glory and redemption.

Maple covered hills wait all year for it. Sun warmed days and crisping breath-visible nights, the air crackling clear enough to cause humbling by the plenitude of stars upon stepping out into the night, on your way home from that final beer at the campus tavern.

There is always one day. One day that astonishes, when the chlorophyll has given up the ghost and called a mass retreat.

One morning, my first college fall, I woke up and looked out the window and thought “No, I am still asleep and dreaming that I have awakened, because this is not planet Earth, as trees just do not come in that color.”

They were hot pink. Fuchsia.

All of them.

As far as I could see.

All as deep and bold and saturated a pink as the wedding dress I had bought to marry Dan in, that my friends told me I simply couldn’t wear and made me exchange for the cornflower blue. (But this is yet years into my future; unimaginable to my college self.)

I went right up to the window, cocked my head left, looked to the mountains, beyond the bowl of fuchsia surrounding. I could see reds, oranges, golden yellows and ashen browns; spots of green, deep and piney, too. Autumn.

Illusion broken. Earthbound, I remained.

But breathless, nonetheless; in awe of nature’s unnatural day-glow splendor, and magnificent, yet ephemeral, beauty.

This post was inspired by a prompt at Write on Edge. This week's RemembeRED assignment was to write a post about Autumn, and in 300 words or less (yikes).

I'm also linking with "Just Write" because this really flowed. And they're both on Tuesdays, and I can't pick just one... And so I'm a two-timer.


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SOC Sunday: ComiCon Come and Gone

Wow. It's been literally months since I've done a Stream of Consciousness Sunday post. Remedying that now, as I want to throw something up onto my blog-space and have neither the time nor brain cells for anything closely shaped. Commencing brain dump...

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New York ComiCon has come and gone.

A highlight of the boys' year; eagerly anticipated, enthusiastically participated in.

Especially since my husband is a comics professional; in the biz, as it were. So he's got a booth in Artists Alley (though writer he may be), and Ethan swells with pride as he confides to people he meets: "My Dad has a table here, we're working at the con."

And indeed we are. Although this year we didn't spend much time at the booth. Busy, busy. And every year it's different though seemingly the same. The boys a year older, changes subtle and great.

I think: In a few years time (one quick blink) I will be setting Ethan and his friends free here, cell phones and allowance cash in pockets, with rendezvous times and contingency plans in place. Teenagers. 

I think: This is getting harder for Jake, he is enjoying it less. changes need to be made in the plans for next year. Autism.

I think: I am pulled in so many directions today, I am present in none. I should be with my mother in the hospital. I should be helping Danny in the booth more. I should be figuring out the autism friendly way to do this with Jake. I should be enjoying Ethan's shy basking in the adulation he's receiving over his costume (he was a PERFECT Link form Zelda).

Last year, in spite of being involved in the organization of it, my husband could not attend the Con, his 93 year-old mother having passed, right on cue, just before it began.

This year my mother is in the hospital, feeling abandoned, wondering why I'm not coming to her today, her memory unable to hold more than a thimbleful of information. I am grateful that most moments she remembers where she is. and why.

It's always something.

Who knows what next year's Con will hold. And I shouldn't be worrying about it yet. It's a whole damn year away.

But my brain, it goes that way. It goes.

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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...

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SNSS: The Bucket and the Mandrake

Today, SNSS is going hyper-local. My guest today, Michaela Searfoorce, is someone I actually met first in real life and not the bloggosphere. (What? It happens!) She lives in my neighborhood and our sons were in the same special needs "challenger division" basketball league. 

Furthermore Michaela is a major force in the New York City Upper West Side Special Needs Parenting community. I had found out about the basketball league at one of the regular monthly informational meetings that Michaela organizes.

Her blog The Foorce (a fun play on her name) is mostly focused on providing support and resources for our local New York City special needs community, but is also a place where Michaela shares some of her personal story from time to time.

She is the mother of three children: 11 year-old James and his two young sisters. James has a rare chromosome defect which has resulted in numerous medical issues, global developmental and physical delays, and labels such as PDD-NOS, Sensory Integration Dysfunction and ADD.

Chances are, if you have a special needs child(ren), they have at least something in common with James. I can tell you firsthand he is a delightful boy with a huge heart and I was always happy when he and Jake were paired up together in basketball practice.

Read on, now, for a glimpse into Michaela's wonderful family, a pair of life-slices that add up to a beautiful thought:

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The Bucket and the Mandrake: Two Small Stories, One Big Lesson - by Michaela Searfoorce

"Mom, help!"

James looked tearfully after the preschooler who was sauntering away with his bucket. Though he is 11 years old now, James is unable to stick up for himself in many circumstances, even with children half his size and age.

After asking politely (meekly, in my opinion) for his bucket back, the boy who grabbed it said "no" and walked over to the other sand area, leaving James to dig around pathetically in the sand with his shovel. I could tell he was upset, both frustrated and embarrassed by his fear of confronting the other child.

"Give James his bucket back right now!"

No, that wasn't me. It was my 2 yr old daughter, jumping down from a nearby jungle gym and charging after the offender. She reached him and ripped the bucket from his hand, yelling "Leave my brother alone. That's his bucket!"

The boy stood there, mouth hanging open. So did I. My daughter marched the bucket back to James and proudly announced, "Here James. Here is your bucket! It's okay!" James wiped his eyes and said gratefully, "Thanks, Margaret."

~~~

"Mom, help! No - don't do it!"

Flash forward to the Harry Potter exhibit in Times Square. I had decided to brave the trip alone while Ryan was at work, and as a consequence was having trouble keeping as close an eye on both James and my 2 year old as I would've liked.

The exhibit was a cool collection of trinkets, costumes and props from the Harry Potter series. James has read all of the books, seen all of the movies, and was even Harry Potter for Halloween last year - I fully expected him to be in love with the place. And he was, aside from some initial anxiety when the sorting hat was placed on peoples heads and loudly started sorting them into Hogwarts houses.

About halfway through the exhibit, Margaret and I were standing by the mandrakes while she eagerly pulled each model plant out of the soil to hear it screech.

For those of you who are not Potter fan(atic)s, mandrakes are small, ugly potted creatures that live in the soil - when you pull them out they emit a cry that renders a person immobilized. Full grown mandrake cries will kill you (don't worry, I'm not ruining a big part of any book!), and in the books students would wear special head gear in order to protect themselves.

So when James saw Margaret across the room, gleefully pulling mandrakes from the soil to listen to their cries, he flew into a total panic. He ran to the far side of the exhibit (self preservation) while screaming, "No! No Margaret! Stop touching them! Mom! Help Margaret! Don't do it, Margaret!"

Everyone froze at the sound of the screams. Tourists young and old looked around the room for "Mom," probably wondering whether this was part of the show or if this large pre-teen was actually terrified of a fake potted plant.

I rushed over and explained to James that they weren't real and that it was okay to pull the mandrakes out, but he wouldn't hear of it. He remained hysterical until we moved Margaret out of danger.

Five minutes later they were both throwing quaffles at quidditch posts. (I don't have time to explain everything about Harry Potter here!)

~~~

I know that some day Margaret will bear the brunt of the "hero responsibility." At 2 years old she already looks out for James in a way that makes me proud.

But, it is my most sincere hope that when she's older she will still be able to remember these times when James bravely tried to come to her rescue as well.

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Reading this lovely post, I found myself once again wishing I had somehow been magically able to provide Jake with a little sister to look up to and after him.
 
And then I read some of Michaela's "Patience and Foortitude" posts on her blog about the challenges of life with a big special needs kid, a toddler and a baby... and I rethought that one.

Having had a little glimpse into Michaela's family here, you should definitely follow her home to her blog, The Foorce, to read more. If you are New York City local, read it all, there's some great resources there. If you're from elsewhere and want to skip the local stuff,, the posts in the "General" category are where you'll find the personal, family ones. 

Start here with this one, about a particularly exhausting evening: Patience and Foortitude, Part 3: Just Foortitude This Time, With Special Guest Appearance By Windex  (and yes, I've finally found someone who makes my often long post titles seem pithy).

Also, try this post about a milestone - riding a Ferris Wheel - that may seem small to some, but we special needs parents know better.  Or this one, a letter of appreciation on James's 11th birthday. 

Finally, if you want further proof of what a supermom Michaela is, read this pair of posts about James's heartbreaking massive "poop incident" at his school (due to his medical issues) and how his mom talked to his inclusion class about it (and answered other questions about James' differences) so that he would be safe retuning to the school, afterward.

Thank you so much, Michaela, for sharing your wonderful son James, and the rest of your lovely, special family with us today.


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3 AM

My watch says 3 AM.

But ER time is timeless time.

The lights always on full bore. The always ignored monitor alarms calling out their ceaseless beep beep beeyoups, making sleep near impossible in this place where it is so desperately needed by all.

The cots have thinned out by now, their former residents lost to beds upstairs or returned to the street beyond.

Thankfully tonight's more than full share of screamers and moaners, the deeply pained and the ecstatically crazed have been among the dispatched.

The one that really got to me: the man in the curtained berth next door, the B bed to my mother's A, groaning loudly, crying, begging for help with his pain, only to be summarily shushed by the nurses.

"Can you please keep it down?" one of them chided, like he was a wheedling child whining for a cookie.

I found myself fervently wishing his impacted gall stones could be magically transported into their bodies, see if a little empathy might suddenly develop.

I sit in my butt-numbing gray plastic chair snugged up to my mother's feet and watch her toss fitfully, sleep clasped but a few moments before being relinquished again to discomfort.

I have passed out twice, once sprawled, once slumped, keeping my less than perfect vigil as we wait for our number to come up.

Some of the staff here are familiar, faces I know from the last years of my father's life when he was a frequent flyer. We nod to each other as I walk my mother to the bathroom, one step oh so carefully placed in front of the next.

Others are new: fresh scrubbed interns, wearier residents; nurses in colorful scrubs with faces cheery or stern, your luck of the draw which you get. 

I miss my children. I miss my bed and the husband waiting in it, a single spoon, un-nestled.

I miss the Mommy who tucked me in at night and banished monsters for me. She has been replaced by this sweet, increasingly frail old woman - still beautiful with her nearly unlined face, her halo of soft white curls.

Her mind and memory are growing softer by the day, soft as her hands which used to cup my face to kiss my cheek, just the way I now kiss hers, tucking her in when we finally get settled into a room at 4:15 in the morning, nearly dawn.

"Goodnight, sleep tight, don't let the bedbugs bite..." I intone in the same singsong she once chimed to me, a thousand years ago in my pink bedroom.

"Where am I?" she asks once again, her voice quavering with exhaustion and slightly slurred from the painkillers that will allow her to finally sink into slumber.

"In the hospital, Mom. You fell, broke your rib."

She nods; reminded, remembers.

"I'm going home to get the boys ready for school, have a shower, an hour of sleep, and then I'll be back."

"What would I do without you?" she asks, patting my hand, grasping it, not quite yet willing to let go.

My mind jumps to all the lonely souls I'd witnessed in the ER tonight, suffering without an ally to stand by, bear comfort.

"I'm here" I say, "I'm here."

And then, eyes closed, breath languorous, her hand unfurls, releasing mine.

And I'm gone.

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Looking Down the Road at Hopeful Parents

I'm not here today, I'm over at:

where I'm talking about what I see when I look into my autistic son Jacob's future.

So come read me over at Hopeful Parents today as I contemplate Looking Down the Road

And it starts as a personal meditation and ends with a call to arms.

Because, people?

There are probably a dozen places scattered around the country right now that would be appropriate for Jake to live in as an adult, if he needs the kind of support I think he's going to need to lead a rich and rewarding, semi-independent life.

And there's going to be hundreds of THOUSANDS of autistic adults like him, that need those spots too.

Think about it.

And then do something about it, please. Take action!

Because it's about 10 years from plan to completion in these things; and we're about 10 years too late, already.

Also? I know today is the 11th and my usual posting day is the 10th. But I spent yesterday, the 10th, in the ER with my mother, once again. She had fallen and, it turns out, fractured a rib. 

And, as is usual in a busy city ER, we spent hours waiting for this test, then that one, the decision to admit, and finally a room... which she got into at 4 AM.

Yes, the fun never stops. Now I'mma gonna get an hour of shut-eye, then head back to the hospital.


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SNSS: Walking the Line

I don't know how to properly introduce today's SNSS guest blogger, to convey her awesomeness. She is Amy Hillis of the blog Transplanted Thoughts.  

Amy is an amazing mother and a wonderful, moving writer. She has also been through more tragedy than any other person I know, and somehow still finds life entertaining and amusing. 

What do I mean by tragedy? Amy has had seven children. Five of them are still living. The other two have been lost to the same rare genetic disorder that affects two out of her three still living younger children (the eldest two, from her first marriage, are now grown). 

When Amy began her blog, her youngest son David was sickly, but still alive, and those of us who read her followed along with his final days, filtered through Amy's anguished posts. He spent the last 5 months of his short life in the hospital, his mother by his side.

Theirs is obviously an intense environment, and yet Amy works hard to bring much balance and order, normalcy, joy and a sense of purpose into their lives. 

Read Amy's moving words, here, now, as she writes about the sometimes rocky relationship between Jacob, her unaffected son and his just-a-bit-younger brother, Jonathan, who is often ill:

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Walking the Line - by Amy Hillis

October 10th is a big day in our house.

It's the anniversary of my middle son's liver transplant. This year marks 6 years since he was given a second chance at life. Jonathan was born with a rare genetic liver disorder called citrullinemia. The only 'cure' - a liver transplant.

The road for Jonathan has been bumpy - speech delays, IEP's, hospitalizations and illnesses that 'normal' healthy kids would never have to deal with.

His older brother doesn't see the struggles that Jonathan has endured. Jacob only sees how much attention Jonathan receives.

Speech therapy, physical therapy, occupational therapy, home-care nurses, doctor's visits and time off of school.

And to rub it in a little bit more - cupcakes and celebrations on a day that's not his birthday or Christmas.

When the boys were smaller and Jonathan had to be hospitalized, Jacob would spend his time at Grandma's house. At first he loved going to Grandma's, but as he got older he began to see it as a punishment, as an unfair consequence of his little brother being sick again.

It was during this time that Jacob started to express a lot of anger towards his little brother. He would take toys away from him, hit him and yell in his face when he was unhappy about something Jonathan had done.

It was such a trying time on so many levels. Helping Jacob to not feel lost in the shuffle became just as important as getting Jonathan well again.

Simple things, like extra cuddle time, one-on one reading time or big boy 'perks' like being able to stay up later or having first choice on movie night. These things became part of our daily routine in an attempt to curb some of the anger and hostility that Jacob felt towards Jonathan.

As the boys have gotten older, balancing the needs of each has been like walking a tightrope. Each one crying "Unfair!" when they think the other is getting the lion's share of the attention.

Fortunately the further out Jonathan gets with his transplant, the less and less time we spend in the hospital, at doctor's appointments and with therapists. Outside of the everyday quarrels that 2 boys born not quite 2 years apart encounter, most of the perceived slights happen on days like October 10th.

A day I choose to celebrate even though at not quite 7, Jonathan doesn't comprehend why it's such a special day for him and for us. We celebrate because I want both boys to honor the life that was given and the life that was lost.

It opens up discussions on the season ahead. On being thankful for what we have and living our lives to the best of our abilities.

Jacob has worked through most of his anger towards his little brother. He is shouldering the responsibility of being the 'big' brother, the one who should take care of the younger boys, with great pride.

I see an empathetic young man emerging from the shell of the little boy who once cried "Unfair!" at being the one who stood in the shadow of his little brother.

I want to thank Varda for asking me to share a piece of our story for SNSS. Sometimes the ones left at home to carry on the every day have a harder job than the ones working through the illnesses and therapies.

Giving a voice to both can do amazing things.

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I am often amazed by Amy, how she carries on with life amidst the loss. She feels and acknowledges her sadness but isn't engulfed and destroyed by it, somehow manages to be there, fully present for her still living children who need their mother as much as ever.

What is most inspiring about her is her realness, and her willingness to share that with her readers. We see that she is some days sad and mad but also loving, humorous and even grateful.

Now that you have read Amy here, you are surely going to want to follow her home to her blog Transplanted Thoughts and read more of her family's story and her beautiful writing.

If you want to know about what happened to her first son with citrullinemia, who lived only 5 days as the doctors puzzled out what was wrong with him, read this post here: Introductions.

For an incredibly touching and sad moment when Amy's son talks with her about missing his baby brother David, and wants to make sure he is being looked after in heaven, read this one: Moon Talk (warning have hanky ready).

And then, because her tag line IS "Life's still funny" try this funny post about her sons' Sailor-speak (something I think all of us with boys will relate to).

Amy would also like it if you would come stalk her on Twitter, where she tweets as @transplantedx3 and on her Facebook Fan page, 

Thank you so much Amy, for bringing your beautiful words to SNSS today.


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Dream City

There is the San Francisco I inhabited in my early twenties and the San Francisco that inhabits my dreams; a simulacrum I have built in my head.

Dreamscape ‘Frisco resembles a paper shadowbox: rows of filigree cut Victorian houses marching down to the Pacific, pitch black against a red-orange sky; perpetually sunset.

A house I never lived in sits on a twisted version of my old Mission corner, Capp and 19th; frying beans and chopped cilantro from the local taqueria perfuming the air, as ever.

My dream house is gray on the outside, sketchy and unformed. But inside? A kaleidoscope puzzle box.

Sometimes there are many rooms, telescoping; sometimes few, claustrophobic.

A tinkly crystal chandelier hangs in an empty sunlit chamber whose high, 15-foot ceiling completes the space, squaring it.

A door opens once to a cerulean blue bathroom, oceanic in size and temperament. Closed, it opens next to a tiny closet, redolent of cedar and old newspapers.

There is an attic, sometimes; low, bare ribbed, and full of secrets.

And sometimes a 4th, 5th, even 6th floor, holding surprises: a pool table; a pool; a family of wise white cats, clearly descended from the one who lived with me once, those many years ago in the real San Francisco.

Golden eyed and mysterious, I had dreamed of her for a month before she found me at a gallery opening in Potrero Hill, yowlingly demanded I take her home.

My memories of California have now taken on fuzzy edges, those wavy lines you cross back and forth between what happened for sure, and what has become mythic in your many years of re-telling your story to yourself.

While my dream San Francisco remains crisp, flash frozen and locked in; revisited in a way the actual has not been for some spate of time.

And who is to say which is the more real?

The one I walk in memory, or in dream?

In both my feet are mere thoughts now, biochemical contrails wrought of firing neurons.  

When the fog descends on a twisty hill, and I chase a white cat through ghostly streets named for planets, does it matter if it is dream or memory?

Really, does it matter?

This post was written in response to a prompt from Write on Edge to paint the picture of a place (real or imaginary) in our mind, and then use words to paint it for our readers. So I chose a place that was both.


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I'm in Katie's Army now

I am thrilled to have been recruited by the wonderful Katie of the blog Sluiter Nation.

And all I had to do was write a blog post for her.

This one: Tribes

Now, if you know me and the gifts that ADD has bestowed in my life, you'll know this "little thing" had me tied up in knots all weekend.

I do guest posts. I love to guest. But I always get anxious when writing for others and not just myself.

And since anxiety makes me uncomfortable? I avoid and procrastinate. And then you add in my perfectionism, my being unable to just write and release?

That means I turn in my guest posts at the weee end of when they've been asked for, sliding in right under the wire. Sorry folks.

I always swear next time will be different.

But I wouldn't hold my breath if I were you.

I even wrote a post about it called "I Fear I Make a Terrible Guest."

So why do I keep subjecting myself to the stress?

Because I love communities, being connected to something larger than myself. Because the glue that holds the bloggosphere together is a combination of guest posting, commenting and linking (plus a healthy dose of Twitter and Facebook and other social media tools).

Being a part of something.

Which, coincidentally, is the theme I was asked to write on, and came up with this post for Katie:

Tribes

Which you should go read over at her blog.

And then you should stay and read Katie. She is wonderful. Generous. Funny. Genuine. The real deal. A mom. A writer. A friend.

I am so thankful to her for having me today.

Making connections.

(Go. Read. See you back here tomorrow.)


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