A Smaller World

I lost a friend last Friday.  Alison Piepmeier was larger than life, a passionate and eloquent advocate for her daughter, Maybelle, and for equality in all things.  We met online, back when I was still writing, and then in person at my first NDSC convention in Washington DC in 2012.

2012 NDSC Convention

She missed the next few conventions for various reasons but I always assumed we'd meet up again at the next one.  But then her tumor came back.   I had planned to go help out for a weekend but the dates were moved and moved again and then there was no more time.   So in the middle of July, a week before my 5th NDSC convention, I manufactured a trip to Charleston and was able to spend an hour or so with her in the morning.  And then another hour in the afternoon.   She was weak, she occasionally fumbled, trying to find the right words, but was as insightful and vibrant as always.

Charleston, 7/11/16

I, however, couldn't find any words.  No profound, comforting thoughts about her looming death, or leaving her daughter nigh orphaned.  Nothing about what her friendship had meant to me.  I hugged her and told her I loved her and left flowers.  I hope that just showing up counted, a little.  I suspect my visit was more for my benefit that hers.  I worry it was intrusive - two plus precious hours lost to random online friend - but am profoundly grateful her mother let me have that time.

Even more so now that I couldn't attend her memorial on Friday.   At least I got to say goodbye in person.

Alison had this gift of making you feel like the most important person in the room.  She was warm and enthusiastic about everything from a FB snapshot to long rambling post.  You can see in the hundreds of comments and eulogies that she made everyone feel just as special and I know I am but one of hundreds who loved and will mourn her.  I am, by contrast, a tetchy introvert but her loss is that much more profound to my small world.  I hope I can show up for my other people with half as much gusto as she did.

Alison Piepmeier
12/11/72 - 8/12/16

Of Time and Place

Just before school let out, I learned The Girl's favorite para had a brother with Down syndrome.  He wasn't allowed to go to school, suggesting he was born in the 1960s, when babies with Ds were still routinely institutionalized.  I wonder about his parents, who defied all social convention when they took him home.  I wonder how bittersweet it must have been for them when IDEA was enacted in 1975, 15(?) years too late.

I wonder if they feel a little twinge knowing their daughter spends her days enabling something their son never had.

1975 is the same year Gore-tex started their medical division.  I don't know when the survival rate for pediatric open heart surgery shifted from abysmal to only slightly terrifying, but 33 years later a tiny piece of rain jacket fixed the giant gaping hole in my daughter's heart.  Had she been born the same year I was, she would have died.

In 1982, relying on medical advice, an appellate court in Indiana allowed six day old Baby Doe to die.  Baby Doe had Down syndrome - a fact his parents found so abhorrent, rather than allow someone else to adopt him & fix a fairly routine medical issue, they withheld food and water till stomach acid ate his lungs.

I wonder about the parents who would have chewed off their own arm for corrective surgery but didn't have caring doctors or the right technology.  I imagine it would sting a little, seeing my girl running across the playground with only a faint scar on her chest to document fortune's grace, knowing their own child was just one decade or late night lab discovery shy of a full life.     

I attended the NDSC convention in June and marveled at the self congratulatory nature of it all.   There is still much work to be done - 5 minutes of Q&A about school inclusion is painful confirmation of this, & my pedicure lady at the hotel reminded me that children w/Ds in Serbia are still hidden away and shameful.  But in this country, today, we have dedicated professionals, best practices, and the full weight and force of federal law.  We have the ABLE act.  We have the internet and each other.  

And we have medical research.  

It's not uncommon to hear parents fervently swear they wouldn't change a thing about their child.  "She wouldn't be who she is without Down syndrome!"  I wonder how much of this is a reflexive reaction to  the trolls and naysayers - we become such fearsome advocates for our children we fear anything other than rainbow spewing giddiness will validate the eugenicists or scare a frightened expectant girl into a clinic.

I think this is the secular version of "special angels sent by God."  My child has a third copy of the 21st chromosome and we do not need to ascribe her otherworldly missions or insight to honor her place in this world.  That extra "love chromosome" (gag) dicked with her heart and landed her in the  PICU when she was 3 months old.  That extra coding dicks around with the chemicals and proteins in her brain and makes her neurons fire inefficiently.  This makes it hard for her to learn things and exceptionally difficult for her to express herself.  Assuming her soul would be any less fantastic if the chemical soup in her head processed language faster is tantamount to claiming she's awesome because she is slow.  It is as reductive and damaging as finding an amputee inspiring simply because they get out of bed in the morning.  My daughter is a fucking delight - not because she has Down syndrome, but because she is.  And it kills me that she cannot tell me her stories.

At the NDSC conference, as I heard about research into drugs that may quiet overactive proteins or activate sleepy neural pathways, I wondered about the doors we will never open. None of the research sounds remotely close to actual application and, just as I started to daydream about experimenting on my 7 year old, one of the researchers mentioned thalidomide.  Woe betide those that fuck with the delicate balance of the human body.

But I wonder if twenty or forty years from now Down syndrome will be medically treated, just like  diabetes or hypothyroidism.  I wonder if I will feel a little twinge in my sunset years, seeing stories about miracles of modern medicine, valedictorians with a little extra, or ivy leaguers.  I wonder if I will regret my caution, just as the little pills prove safe… just as I start watching for signs of Alzheimer's in my baby.  I wonder.

Little Idea(s) about School

Two weeks ago I went with The Girl's kindy teacher to hear Patti McVay talk about inclusion.  If you have a child with special needs - any kind - you should listen to her.  Her presentation at the NDSC convention in Denver left me in tears and I started to get choked up again this time but pinched my arm and stared at my shoes till it passed.  She is a true believer in the power of an inclusive education - not just for those with IEPs but for the typical kids too.  She talks about how to make it work with behavior plans, modified work, para support, etc.  Listening to her it all seems quite reasonable, easy even.

She stressed and I have heard over & over again that every study ever done confirms the benefits of inclusion. 

But I get lost in the details.  The fact is my daughter has an IEP because she has certain delays.  She needs extra time and practice to pick things up.  Her biggest delay, of course, is that she's effectively non-verbal and inclusion be damned but I would cut off my own arm if I could get her in 5 hours of speech a day.  I think the answer to that would be she's not going to learn to talk sitting in a back room with a bunch of other non-verbal kids, but she WAS in daycare and preschool with typical kids and the only thing she picked up from them were cold germs.  Be it motor planning or low tone, she's going to have to practice-practice-practice and work 50x harder than other kids to learn to enunciate.   She is using an AAC but in my mind little will affect her ability to be meaningfully included and to eventually live independently more than her ability to speak clearly. 

But I have no idea how to make that happen.  She's already 6 - I don't know if it will happen. 

And 5 hours of speech therapy/day does not make for happy, well-rounded children or fiscally solvent families so...  we're back to the inclusive class.  Thank God for Apple & Proloquo. 

Going into this year, the school and I did try maximize her time with her peers.  We cut PT in half and what's left is push in, half her OT is push in (which the kindy teacher was thrilled about), and I think about half her speech is.  I think Patti would ask why it isn't ALL push in.  And she'd ask why The Girl is still spending time in the SpEd room.  (Or resource room. Or whatever the hell they call it).

At the workshop I asked what the SpEd teacher was supposed to do if kids were 100% included. The answer was co-teaching.  I have no idea what co-teaching looks like.

So I went out to breakfast again with the most fabulous SpEd teacher ever and asked, ever so delicately, what she was doing with my kid.  Last year this teacher gave my child a voice - she's the reason my daughter uses Proloquo.  Did I mention I love her?  This year she's teaching my daughter to read.  And do math.  But, most of all, she is teaching my non-verbal 6 year old to read.  Oh, my heart. 

I have no idea how that happens.  I have no teaching credential or educational theories on my bookshelf but reading is right behind speaking on my list of hopes & dreams for my girl.  I tried to work with my son when he was making an awkward transition from "See Cat Run" to full sentences but only managed to frustrate both of us.  Then his 2nd grade teacher did something magic and it suddenly just clicked for him.  I don't think it will magically and organically click for my girl though. 

One of the sessions I went to at this year's NDSC convention was on teaching kids with Ds to read.  The presenter opened with a story about watching the kid with an IEP get pulled out for "therapy" just as the other kids were sitting down for story time.  Which seems a wee bit counter-intuitive, even to me.  Inclusion, right? 

Except she went on to say that she's never had a person (some were adults) not learn to read, but sometimes it took a LOT of practice.  Annndddd..... we're back in the resource room. 

I laid out my angst on Facebook and the general consensus was that a little tutoring isn't a bad thing (also that calling it tutoring makes it sound better).  Which is the place I keep coming back to too, though I feel guilty for being OK with this knowing how hard other families have fought for a 100% setting.  I have no idea if The Girl's current SpEd/gen ed ratio is ideal for her.  I have no idea how long it will take her to learn to read.  But I DO know both her teachers care about teaching her.  I know that matters.  I hope it matters enough.

~~~~~~~~~~~~~~~~~~~~~~~~~

Speaking of books, The Boy and I just finished Percy Jackson, which had immediately followed Harry Potter.  We needed to give the magical superpowers a rest before Narnia or The Hobbit and I thought Little House on the Prairie would be nicely grounding.  My copies were given away years ago but I decided we'd skip the library & ordered the full set on Amazon.  I thought they'd be nice to have around... for both my children to read.  They arrived today.

Advocate Mom

Last year I wrote an Ode to the Convention for our local Ds group so if you're looking for a perky general NDSC Convention overview, go there.  It's all still spot on, except this year I met even more new dearest friends.  People I could spend hours & hours talking to, and who I'd get on a plane to go see tomorrow (and I don't say that lightly - the charm of jet travel is dead).  

 
Not that it was all social.  This was my third year going and I still had to make some hard choices between sessions. Perhaps because I wasn't feeling overwhelmed and frustrated enough with my life, I bypassed talks on inclusive education, technology, and cognition research (all dear to my heart) and went to the legislative action session, put on by Susan Goodman of the NDSC.  Oh, MAN.  That was not the right place to go for peace of mind.  There were no self congratulatory secret club hi-fives.  We are a population besieged and subject to the whims and grammatical errors of baby faced staffers drafting legislation in dark back rooms.  She talked about seclusion restraint, the ABLE Act, and Medicaid.  Issues that can wreck immediate and life altering change on families.  Apparently there's even talk of entwining IDEA with Common Core.  Is this a good idea?  Will it raise standards, ensure accountability?  Or will it erase decades of progress?  I have NO idea.  This is heavy policy wonk territory and so much of it depends on obscure studies and competing "experts."  So much depends on implementation and application by faceless bureaucrats.  It's overwhelming.

She also said something troubling - she said compared to other groups, the Down syndrome community is NOT particularly politically active.  

I was peripherally involved in the online campaign following Ethan Saylor's death and to be blunt, it left a not-so-great taste in my mouth.  The national groups weren't talking, the police were busy "investigating" themselves, and very, very few people gave a fuck.  Politicians, media giants, and celebrities who had children with Down syndrome stayed silent and ignored direct appeals for help.  Outside the Facebook group I was in, the internet let out a lazy *meh*.  Inside the FB group... well that was a PhD thesis on group dynamics begging to be written.  We were some pissed off parents with a righteous cause but there was also sniping, grumbling, and hurt feelings.  There were hundreds of ideas, letter campaigns, competing online petitions, and blogging manifestos - but in the end it all petered out.  20 angry letters go in a [round] file.  I doubt if any official ever got more than 100 letters, much less the 20,000 needed.  There were no marches in the streets.  No one chained themselves to the theater doors.  Turns out Ethan's mom was in favor of the police training many of us had lambasted as whitewash.  The officers who killed him were never charged.  I feel like we failed.

And then there's that pesky job-with-small-children situation.  I do enjoy my social media - I meah, hell,  I "have a blog" for whatever that's worth ($5 payable to google annually, if you're curious) - but I can barely keep up with the online petitions conveniently linked to in my FB feed.  I rarely make it to our local Ds group's fun events, much less to the serious stuff.  The thought of meeting with competing experts and parsing the fine print of my state's Medicaid law is.... just, no.   Susan Goodman suggested I make friends with my representatives' staffers....*snort*.  It takes a year for new co-workers' names to sink in (in fairness, turnover is high) and did I mention my lack of people skills?  I'm not going to do any cause any good if I show up with burnt cookies, stammering about obscure educational codes of which I have little understanding. 

There's also the small fact that I really haven't had to advocate for my daughter, not really. Not yet.  My girl's IEP team is fantastic and they've given, without us even asking, what other parents have to hire attorneys for.  No conflict.  There've been a couple doctors I haven't cared for and we've switched.  No big deal. I've chided people about the use of the R-word.  I hate the cold, hard eyes of the pre-teen girls at the park, but I stare them down and they keep their distance.  There aren't any campaign ribbons for besting 13 year olds.  [Though there really should be - those girls can be mean].  I find the number of competing Ds-interest groups a travesty of wasted resources, so I'm not going to start another, and the Great Letterbox debate bores me to tears. (It's a piece of paper, for God's sake - you think people will forget termination is an option if you don't mention it?  Gah.)  Unlike other, more natural advocates, I have had no searing experience to light a fire in my belly. 

But both my children love to sneak into our bed at night.  And as irritating as those elbows and feet are, I marvel at the fact that their safest, happiest place in the whole wide world is right there between mom and dad.  The level of  responsibility that entails brings me to my knees.  I'd like them to eventually venture forth in the world - not just so I can sleep better - but because it's their right as human beings.  I'd like it to be a reasonably safe & welcoming place.  It might not be, especially for my girl, but their trust requires me to try.  Small steps, people, small steps. 

And so with that it mind:  If you want to earn some good karma, contact your Senator and Representative to ask them to vote for the ABLE act.  This isn't a Down syndrome specific issue - all disabilities are welcome.  There is wealth of information, links, and pre-done templates right here, on the NDSC website, and if you don't know who your Rep is, you can find them here.  Send an email, make a phone call, drop a line on their facebook page.  Do good.  

Query, and Friends over Forty

Would be weird if I actually befriended The Girl’s SpEd teacher?   Like not just “friendly,” but meet for coffee after hours?  She really is awesome and is one of those rare, rare people who seems to like me too, and I think she just accepted my casual invite/bribe to chat about ESY.  At Panera.  On Tuesday.  

It IS, however, entirely possible she just likes free coffee.   

I hit it off with one of The Boy’s teachers a couple years but she got weird when I invited her to a bunco group (Bunco, for the uninitiated, is the mid-west's excuse for a bunch of SAHMs to get together and drink too much.  There is occasionally dice involved.)  In retrospect she had good instincts, since I dropped out shortly thereafter myself.  If you can’t click with anyone over a bottle or two of wine there is no hope.  These are not the people you're looking for. 

I'm sure I was mostly to blame since I'm never at my most adorable when confronting large and less than warm groups of people I don't know, so no fault of theirs for not finding me fabulous, but it just wasn't happening.  Even with the wine.  Did I mention the wine?  It didn't help.  

Ever since I’ve had it in my head that the social mingling of parents & school staff is frowned upon.  It probably is.  The potential conflicts could be legion.  Especially if you spend a little time with them and then decide you don't care for them that much after all?  Have you ever hit it off with a mom and tried to  expand into a couples' dinner and then you find out the couple bicker all night and/or over-share their bedroom fetishes?  

Yikes. 

But still.  Making friends as a grown up is hard, especially for the socially awkward an introvert.  I have been blessed by several very dear friends and made more than I could've hoped for through this space.  (Most of whom I'm excited to see this summer at the NDSC conference!  Whoot!)

But as loved as I feel in general I don't think I can say I'm not hiring - any good company will snatch up quality people, independent of staffing levels, right?  

So.  

I guess I'm getting coffee on Tuesday!?

(yikes!)

An Ode to the Convention

[I wrote this for our local Down syndrome group's blog here; just re-posting for my own records. 
Carry on... :) ]

My daughter was diagnosed with Down syndrome in utero, right after they found a massive hole in her heart.  I spent the last few months of my pregnancy reading everything I could find but I was never much one for groups so I stayed quiet on the message boards, never left any comments on the blogs I stumbled across, and was still blissfully Facebook free.  I was also distracted by the fact that several months hence someone was going to slice my child’s chest open – “community” isn’t on the radar when you’re busy studying survival statistics.

I was also a little alarmed by the vast spectrum of people out there – angry, religious, atheist, grieving, perky, happy, sad, you name it.  It was overwhelming and I doubted whether a little chromosome was reason enough to wade into that mess.  It took years before I started blogging myself and then another couple before I finally conceded to the lovely monstrosity that is Facebook.  Along the way I did latch on to a few like-minded moms but I didn’t attend the NDSC convention, the mother of all groups, until last year.  And I – an admitted introvert – was sold.  Hard.  And now I want to sell you:

First, there is a ton of information.  They do an awesome job of offering something for every age range and interest – from babies, to school, to independent living.  There are talks about finances, science and research, computer apps, and pretty much anything else you’d fancy.  Even if you can’t go every year, you should go just once to listen to Dr. Skotko talk about siblings and Libby Kumin on speech.  This isn’t information you can pick up in an internet article or a textbook, this is why and how, at its best.

This year, for example, after a surprising decision to send my girl to kindergarten early, I attended a talk on inclusion by Patti McVay and it was revelatory.  I understood it to be the preferred practice, understood the theory of peer modeling, and have cheered and consoled friends as they wrangled with their schools, but it wasn’t a reality for us yet and I remained a bit fuzzy on the logistics.  I worried about bullies and my girl ending up in the corner, ignored.  But I left that workshop weeping, full of hope, and I am NOT a crier.  This alone was worth the trip.

Second, it’s euphoric.  Just imagine a weekend surrounded by people who get it.  Who won’t accidently let slip the “R” word, who intuitively understand that kids come in all packages, and who only express pity when you tell them about that crazy shuttle ride, not when chatting about your child’s latest ups and, um, downs.  Plus, you can meet your computer friends in real life, turn them real friends, and it becomes much less weird to explain your social circle to the in laws.  And did I mention I’m not a people person?  If you normally like people, it might be even better.

Third, it’s a great opportunity for the kids.  We actually left mine with the grandparents this year because the kids’ camps fill up faster than I can plan, but ignore the hypocrisy.  Yes, inclusion is awesome – the other 362 days of the year. My daughter will learn to live in, navigate, and find happiness in this world just like her typical brother.  But I’m not naive enough to think it will always be easy for her.  I want to offer my daughter a fun weekend where she can relax and compare notes with her peers, complain about her over-protective parents, and cut loose on the dance floor, free of high school prom politics.  (Did I mention there was dancing?  There’s dancing!)  There’s an entirely separate track for self advocates over 15 – a space just for my girl and her friends.

There’s also a sibling track for 6^th graders and up.  As great as my two kids are together now, and as open as we try to be about it, I’m also not so naïve as to think my son might not want to touch base with other kids who have to sit in SLP waiting rooms.  He might even want to let off a little steam about his goofy parents or atypical sister, without it turning into A Thing.

Even if classes make you yawn and your kids never complain, last year I was waiting in the lobby for my husband when I saw a teenage boy do what teenage boys do the world over – he walked past a girl dressed to the nines for the dance, did an abrupt about face, walked up and introduced himself.  My husband arrived and we left to the sound of the girl giggling.  Both had Down syndrome.  My heart melted.

I know it can be expensive.  My husband works for an airline, we fly for free, and it’s still expensive.  But after the first year I swore I’d go even if meant three days of top ramen and park benches (happily for my back, we were able to avoid that this year).  And lucky for YOU, next year’s conference is in Indianapolis, a mere 4 hour drive from St. Louis.  If the budget looks daunting, don’t despair:

1. Skip the meal plan.  We’ve never done it.  Most hotels have mini-fridges now.  Swing by a grocery store and pick up a couple staples before you check in – yogurt, cereal, PB&J, top ramen, whatever floats your boat.
2. Skip the big award dinner.  We had a pizza party in our room that night instead.  Just as awesome, no crowds, no rubbery convention chicken.  The dance after is always free and there’s no dress code.  You see everything from shorts to prom dresses.
3. You don’t HAVE to stay in the designated hotel.  If you can find a cheaper hotel nearby, book it.  Someone else will invite you to their room for pizza and nobody will notice or care where you slept.
4. If you’re still skeptical, come the first year kidless, even spouseless, to check it out before you multiply your costs by a few mouths.  You’ll get the presenter’s power points as part of your fee and can report back.  Some of the presentations are even available by video later.
5. Split a room – there are always others traveling solo.  FB is great for cost sharing hotels, cabs, etc.

Community, information, and dancing – what’s not to love?  It’s a short drive next year, and who knows?  If you come, I may even invite you over for pizza.

Ups and... Downs

Will that ever stop being funny?  

Lest anyone think all I've done is work the last two months, this is my catch up/ photo dump/ clinging onto the (mostly) happy moments post.

MAY: 

My son wanted a Minecraft party for his birthday.  Two-ish (?) days beforehand I realized the noble folks there have not yet sold out to corporate America.  Meaning there are no pre-packaged Minecrafty items available at major retailers.  And it was too late for Etsy.  Oh, fffuuuu.... 

I am NOT a crafty person.  Pintrest makes me itchy.  But bless their enormous pixels, Minecraft is all squares.  Surely I can manage that?

Butcher paper & a square brush, left over construction paper, and Rice Krispie/corn flake treats with cocoa & green food dye #37 for the Win!

I think he had a good time. (This was for his family party; the fiasco of his first official "friends" party is here.  The Girl's party will be in a couple weeks.  What's with the summer birthdays?)

JUNE:

We went to the annual Ds Walk/fundraiser but gave friends & family almost no notice so it was just the four of us.  The Girl was highly annoyed.  Possibly with her mother's pathological inability to plan ahead.  Also because we didn't let her stay on the slide all day.  Mean parents. 

But not to worry, we went to a street fair later that month and she was much happier.  This girl loves her selfies!  [The boy ditched us for his cousins]

JULY 4th:

Aunt Mary came to town, which was awesome.  We went to the sculpture park, which was grand.  One of my food experiments turned out beautifully (not pictured: the several that didn't and my kitchen, after).  And for the first time, my sound sensitive girl sat thru the fireworks and loved them, clapping and laughing and having a marvelous time.  I even posted something on facebook the next day about how much she'd grown up.

But as soon as I pressed enter I had that weird, unsettled feeling.  Could it really be that easy? 

Oh, fffuuuu.... 

Double ear infection. 

Fireworks are apparently even better when you can't hear the explosions.  

Whoops.

JULY, cont'd:

If you're new here, my husband works for an airline and we fly for free, but standby as "non revenue generating passengers".  No empty seats, no flight.  Thru trial and much error, we've figured out the basics - early morning flights are good, flying in the summer is bad, holidays are worse.  Trying to get somewhere by a certain time?  The gods will laugh.  

I need to remember that last bit.  Two weeks ago Matt and I went to Denver for the NDSC convention.  We got to the airport at 4:30 in the morning, as we should, and Matt got his 5am flight, no problem.  The twit was already in Denver napping before I had lunch.  I passed up the 5:30 to Chicago, hoping for the 6:30 direct to Denver because no way everyone shows up on time for a 6:30am flight.  HA!  Wrong!  So I took the 9:00 to Chicago but all the directs from there looked bad too so I ended up going thru Akron.  Akron, in case you're a bit fuzzy on American geography, is not in between Missouri and Colorado.  Eleven hours after leaving, a nearby mom pointed out the Mississippi to her kids as we flew over it. Eleven hours... to end up back where I started.  Yay!  

It could've been worse though - I missed Friday's events but arrived in time for dinner and didn't have to go thru Seattle or Portugal... or, horror, buy a ticket.  

Win???  

Don't hold me to those times - I think I went thru 3 times zones twice and it got a little fuzzy after Ohio.

Coming home I did everything wrong - late afternoon flight, out of a major hub, on a Sunday, during the summer.   Seventy shades of wrong.  The ticket agent on the first flight I tried openly mocked me.  The gal on the next flight out agreed to list me but I was #16 and the flight was full.  I started staking out the best corners of the airport to camp in.  But, lo, one person didn't show up and, in sweet but slightly co-dependent and defeatist fashion, none of the couples ahead of me in line wanted to separate.  Families may be the glue that holds society together, they may make all the other bullshit worth it but... ruthless isolationism for the win!  

One more reason why Matt and I don't fly together.  (That, and a wee bit of paranoia about orphaning my children.)

I can't let this end on an anti-family note, so here's a bonus picture of the kids at Ted Drewe's

Doesn't it seem like the summer should've involved more than one post?  School starts in ten days. 

Oh, fffuuuu....  

NDSC! Friday.

Guess where we were this past weekend?

The 40th annual National Down Syndrome Congress Convention!  This was the first year we went and it is definitely absolutely going to be an annual event going forward.  Even if we have to sleep on the sidewalk and eat nothing but beef jerky while there.  I am a quiet solitary creature but these were my people and it was marvelous to be home.

Well, they were mostly my people.  The lady behind me in the coffee line talking on her cell about all the "special angels" around her in the hotel - she might have more a second cousin on my ex-step-brother's side.  My daughter, for one, was decidedly not angelic on the flight home... but I'm getting ahead of myself.

She looks sweet here.  Don't let her fool you.

Instead of covering 48 hours in one marathon post, I'm going to try something novel and break this up into readable bits, starting on Friday:  Matt & The Boy were actually supposed to arrive before me but got stuck in Chicago for most of the day so I ended up at the "bloggers' sharing session" with The Girl.  The one session they specifically recommended you NOT bring your child.  Especially not a child that had been rudely woken at 4 that morning and who refused to nap all day.  Hmmm.

And while I don't want to start this off on a down note (ha!), this was the session I was most excited about and the only one I ended up feeling a bit meh about after.  Due in large part to that fact that I had also gotten up at 4 that morning, had checked into the hotel a mere 15 minutes before the session started at 3:30 (math whizzes will note that was Travel Hour 11.25), and then spent most of the time trying to keep The Girl's hands out of other people's purses.  There were some folks there that wanted to start a blog so a lot of the discussion was about wordpress versus blogger, about how often they should post, and what they should post.  Since my last post was spent pondering what sort of vibes I'm sending out into the universe, I'm not unsympathetic, but it wasn't quite what I expected.

My two cents, which I didn't share at the time because I was really, really tired:  just do it.  There's no magic formula.  Share what you want, adopt monikers, reveal your name, post pictures, don't, write bad haikus, share recipes, advocate, spend your time venting and unburden your soul, or become a Happy Pretty Blog and provide good PR for the rest of us.  Post as often as you want or just when you can.  Write about Down syndrome, therapy, kids, dogs, toenail polish, God, politics, work, or your latest trip to Target.  Or all of the above.  It's your space.  I don't have hundreds of readers so wouldn't be able to tell you how to snag them, but is that what you want?  It's not just about the numbers.  As you poke around on the internet you will hopefully find kindred souls, who make you laugh or think or cry, or maybe even all three and, if you are really really lucky, they will read your stories and enjoy them.  Even the one about Target.

And then one day you might meet them in person and you'll know they're just as fun & fabulous IRL as they are on screen & you will be so very grateful you stumbled into this community.

[And you might also meet a bunch of people you've been following for forever but haven't introduced yourself to and you might freak them out a bit with your stalker-like enthusiasm so you'll resolve to delurk on more blogs.  Just sayin'].

Totally unrelated photos taken with Matt's craptastic camera phone on Saturday.

Related photos, also of craptastic quality, but taken Saturday night at our little pizza party.  Which I think needs to become a tradition.  Am taking name suggestions - not quite BlogHer, how 'bout BloggeDs?  Some of my favorite people are missing - they either didn't make it to DC or went to the banquet instead.  Ah-HEM.

In no particular order:  Baxter Sez, *Results Not Typical, Unringing the Bell, Big Blueberry Eyes, and Life Decanted (at lunch).