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

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.  

Diary of a Single Mom.

Editor's note:  There may have been a *slight* delay between the writing and the publishing here so you should probably interpret "last weekend" to mean 10-ish days ago. 

Matt worked all last weekend, Monday night, and then left Tuesday for Los Angeles, to help my Dad, back from his high sea adventure, pack up Gigi's things.  It was a belated Valentine's Day present for me (I know, so romantic) since my flight bennies are screwed up, I can't miss any more time from work, my low back wasn't up for hauling furniture and -mostly- because I really, really didn't want to see Gigi's empty house.

He was supposed to come back Friday but finally bought a ticket late Sunday after spending two days camped in various airports and a random hotel in Denver, courtesy of Winter Storm, Episode XVII and the airlines' flight cuts.  Yay.  

While there was significantly less laundry, we all missed him.  Some of us for more selfish reasons than others.  I didn't go running for 10 days and, well, bless all the single moms out there.  If you know one, go do something nice for her.  Buy her a coffee.  Or tell her she's still pretty, despite the uncombed hair and ragged nails.  I   She might have started crying if you had.

**************  

On Monday I was busy congratulating myself for all the Fun! Educational! things I'd done with the kids that weekend and marveling at how efficiently I unloaded the dishwasher while the coffee brewed.  I know!  Genius, right?  I should've gotten an award or something.

On Tuesday I folded a load of towels.  I decided the kitchen counters didn't really need to be wiped down that often but the kids were clean and stories read.  I can prioritize like a boss.

I'm not sure what the kids ate for dinner Wednesday and I KNOW one of them did not brush their teeth all day.  I fell asleep on a pillow pet next to one of them.  The one that kicks.  

Thursday morning I couldn't find the large white hairy dog.  He's usually impatiently waiting for me to go downstairs and let him out, but wasn't by the gate.  I thought maybe he'd slept downstairs but he wasn't there either and didn't come when I called.  Holy hell, had I accidentally left him out all night?  Full of remorse and thinking I was going to owe him a big steak, I called.  Nothing.  I saw the temperature gauge - 10 degrees.  Holy hell, I'd let my dog freeze to death!  They were going to take my children away from me and I'd have to move and change my name to avoid the hate mail.  

Dramatic Reenactment

[I found him happily curled up on a pile of laundry in my closet.  SOMEONE in this house insists on closing All Doors and had shut him up inside. *phew!*  All my black sweaters, however, appear unsalvageable].

SOMEONE, playing dress up.

I got to work at 9 and found out at 10 my father in law was bringing The Boy to my house after school, instead of my OCD OR-clean SIL's.  I rushed home at 11 to frantically hide piles, vacuum up the fuzzy elephant herd rolling around the floor, and throw something in the crockpot so the place didn't smell like dirty boy socks, despair, and large white hairy dog.

Jeeeezzz… house and reputation salvaged from the brink by pure panic grit (and a shockingly flexible schedule).  I fantasized about live in domestic help and bald dogs on the way back to the office.  

But I was triumphant by Friday. There was only one morning tardy, no emergency calls to plumbers, fire departments, or in-laws, and *bonus!* I hadn't let anyone freeze to death.  Whoot!

In celebration, we had movie night / camp out in Mom's room…. where I noticed The Boy scratching his head.  There'd been a note a few weeks ago about head lice at school so I panicked and rushed him into the bathroom, fully prepared to shave his head bald, but it was just a rash on his neck.

[I find the phrase "just a rash" hysterically funny now.]

He took a quick shower & was fine so we finished the movie & he went to bed.  Saturday morning his entire torso was red & welty.  I made an appointment with his ped.  The hives disappeared.  (Never, ever underestimate the healing power of a phone call.)  I cancelled the appointment.  They came back, worse…. naturally, minutes after the doctor's office closed.  I called the nurse line and got their blessing for Benadryl.  Which worked great, except when the dose wore off the hives came back & had spread down to his knees & hands.

By Sunday morning his entire back looked like a 3rd degree burn with blisters, and the welts were perilously close to his eyes.  Darn it!  I waved my white flag, called the in laws to watch The Girl, and hauled The Boy off to the ER where they were appropriately impressed and gave him some Prednisone.

Best part of the day?  He thought it tasted like egg nog.

I think the best part of the day really was that I had people to call.  Maybe not people I don't have to vacuum for, but people nonetheless.  And not that I couldn't have wrangled The Girl in the ER, but I don't think she's supposed to play with the Sharps container and it was easier to focus on the one racing toward anaphylaxis shock.  If you know someone going it alone?  Even short term?  Be their people and bring coffee.  Lots & lots of coffee.  And maybe some extra Benadryl, just in case. 

Shedding on the couch this time, not my sweaters.

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....  

In 'n Out

I spent the last week in Los Angeles with Gigi - she slept a lot and didn't have much to say so I was able to catch up on Facebook and my reader.   I did read everything you wrote but started the week with over 1000 posts so my usual charming, pithy comments (ha!) have been withheld in the interest of time management.  I hope y'all forgive me.

The last six weeks of work, since losing a co-worker, and this week, sitting next to my grandmother who would very much like to die, have been draining.  There were the usual stand by travel shenanigans so Matt ended up staying home with the kids.  It should have been a relaxing week - no minions to tend to & no corporate gods to worship.  I ran everyday and watched movies with her, as well as reading, but as the work stress slide away, I fretted over bedsores and those awful words, "quality of life", instead.  She didn't want to get in her wheelchair and go outside.  She didn't care what we watched on TV.  She didn't care what was for dinner.  She cared very much that the kids weren't coming but that was the one thing I couldn't give her.

As nice as it would have been nice to close out this week with some deep, insightful thoughts on disability and the meaning of life, I actually just feel tired and sad.  I bought some lamb chops for our last dinner together and couldn't find the tiny cast iron broiler she'd use when she cooked for just the two of us - I nearly started crying.  Then I had to cut the lamb off the bone and into tiny pieces for her.  I made potatoes instead of couscous, which is what she would have served, because the potatoes were easier for her to eat.  And when her aide had said earlier she didn't care for lamb and would pull something from the freezer I was relieved because that was our meal, and our tiny broiler wouldn't have been big enough for lamb chops for three.

Which was not a very nice thought, considering this is the lady taking care of my grandmother.

The broiler, found.

I also found myself thoroughly impatient with the online debate over inspiration porn & ableism, with parents grieving their reasonably healthy, living children &, perversely, those criticizing the parents for adding to the "grief narrative".  I'd like someone to come explain to my grandmother how the utensils she can now barely hold are ableist and figure out some other way for her to eat.  Assuming she can hear you.  Because the pillow keeps knocking her hearing aids out.  Damn ALL the words.

I have been a colossal grump.

I was even a total dick to one guy on FB over what, in retrospect, was a fairly innocuous bit about "better blogging".  I'm still cringing about that - the person I am in my head would have shrugged and moved on.  Maybe it's a good thing I haven't been commenting?  (for everyone else, that is)  Hopefully the universe will forgive me that one.

I usually DO enjoy the conversations.  Language matters.  It shapes our perceptions, chips away at the pity, and kills the "special angel" comments.  Advocacy, writ large over the decades, lead to our recent, delightfully awesome IEP meeting.  But the lady taking care of my grandmother, who once worked with disabled kids (*cough*  "kids with disabilities"), and who used about 10 different cringe-worthy non-people-first terms in one twenty minute conversation, made my grandmother enchiladas and told me about a time she called her friend, the council women, because her "little Downs girl" belonged in the regular class and she was going to take on the entire Los Angeles school district to make sure it happened.  Sometimes language is just a jumble of verbs and adjectives.

Sometimes we I need to be free to tell my story, to grieve Gigi's lost independence without regard for a  "disability narrative", or fret over my child's missing voice without being an "ableist".  Without worrying about how to get 18,000 page views or wondering if my header picture is attractive enough.   This was never really that kind of blog, anyway - obviously, given my 3 readers.  Matt and I are going to the NDSC conference next weekend.  Maybe I'll get a little artsy advocacy inspiration going and get back in the game.  

The quality only matters if you like cheeseburgers.

The Daily Grind

...continues.  I was thisclose to being caught up when my co-worker quit this week. *sigh*  
Work-life balance is a myth. 

However, for pure entertainment purposes, I have four post-ettes ripped almost right from the headlines ...of that month old paper you haven't recycled yet.  I tell ya, it's almost just like CNN over here. 

Angelina Jolie gets a double mastectomy
This sparked quite a bit of conversation online but, although we have lots of other issues, breast cancer hasn't made an appearance in my near family.  Of course Gigi only had boys and my mom is an only child so my statistical group might be a little skewed, but let's not quibble.  So about a month ago I went to see my ob-gyn because the girls were sore, aching all the way down to the muscle and getting worse.  He said...      (*dramatic pause*)

I SHOULD DRINK LESS COFFEE.

(*sob*)
I'm not trying to make light of this and I know I should be grateful it's not anything real, but please, please, please don't take away my coffee.  Please?

Parents sue over their son's photo
I've thought off & on about the risks of putting my girl's picture out into the world but this space is tiny enough to avoid the creeps' radars and haven't done anything about it.  But I don't let the schools use or publish either kids' photo.  Because I am a hypocrite.  Of which I was again reminded when The Girl's daycare primary called a couple weeks ago to ask if I wanted her included in the end of year video.  I said no but thanked them for asking - I'm sure they were just as worried I'd flip out over the exclusion as the potential liability for breaching the 'no photo' form.  It's got to be tough for them to navigate a bunch of ferociously overly-sensitive parents.  Meanwhile I'm on a self imposed photo blog ban till I get this watermarking thing figured out.  Time to follow my own obscure, conflicting, Kafka-like rules. 

This post by a huge NDSS fundraiser, telling them off.
Unlike the NDSS, our local group’s new president has taken the ‘advocacy’ in their mission statement to heart and has been emailing updates on the Robert Ethan Saylor case, calls to contact state congressmen to preserve early intervention funding, and federal Reps on the seclusion/restraint bill.  Weirdly I can push, bully, and charm people on the phone all day at work without qualm, but I hate-hate-hate talking to anyone at home.  Cable people and babysitters are solely Matt’s responsibility.  But goaded into action by my local group, I summoned up all my emotional reserves and made whopping 1 minute phone calls to each of my Reps’ snarky staffers.  And then I signed up for this year’s Step Up walk [ours is a “Step Up,” not a Buddy Walk, so they don’t have to kick back any of their money to the NDSS] because I can’t complain about the national groups' colossal failures without supporting my group when it’s doing it right.  I’m not that much of a hypocrite.

Although I gave my friends and family exactly two weeks notice and of course everyone is booked. *sigh*  Baby steps, people, baby steps.

Manhattan women buy disability guides
I know you all heard about this, but it reminded me I never wrote about our last trip to Disney in January.  Sadly it will likely be literally the LAST trip, because just after we came home Disney abruptly killed our travel industry discount, both cars now need timing belts (and happy car fairy dust), and we (surprise!) didn't withhold nearly enough money last year for the IRS.  Boo.

Oh, wait...  So if we stand in line with the nice lady from New York and her family she'd pay for our trip?  We wouldn't have to talk to her, or anything, would we?  Hmmm.  

I'm joking!  (kind of.  maybe.  depends on the offer - what's our souvenir allowance?)

We were there to run Disney's half marathon but I brilliantly took the kids to the park the day before in awful, terrible, no good, very bad shoes.  My feet hurt by the end of the day and they hurt worse the next morning, right before I was supposed to run 13 miles on them.  I was lucky though, because I ran the whole way with this nice lady here and it was the first time I've been able to talk and run at the same time.  It was a personal worst, as far as time goes, and I whimpered for days after like I was walking on broken glass, but I didn't think you could have that much fun running.  It was awesome. 

(ms. see-tee-via!)

There were fireworks!  

Every race needs fireworks.

At one point in the park I was holding The Girl while Matt and The Boy were off procuring provisions.  A guy approached us, said my girl was gorgeous (of course!), and to dispel the potential creepiness, he waved over at his family, including an older boy with Ds, they waved back, and we all chuckled a bit.  Then he palmed his special needs pass like it was hot watch and asked if I knew what it was.  Then I really laughed and showed him ours.  Who knew?  There really IS a secret club card.  

I truly hope that the socialite doesn't screw it up for everyone else.  The first time we went I felt a little guilty because The Girl wasn't any more of a pill than any other 3 year old, but there's no way my almost-5 year old tornado could stand in line for an hour or two.  Not a chance.  Even the couple times the special needs line was long and we had to wait were not great - she's too big to hold for long, yelled to get out of her stroller, and kept trying to bolt thru the crowds.  I suppose this would be more persuasive for Disney if I didn't preempt my story by saying we were too poor to visit but we'll get back - one way or another!

Day Three

Update:  I wrote most of this yesterday as Gigi was mid surgery and I was practicing some of my better avoidance techniques.  She's doing... Ok ...this morning & is still in ICU.  

...So we are going to talk shoes.  Who doesn't love shoes?  I didn't at first, and didn't start wearing heels till I was out of school... But then I fell hard, figuratively speaking, and wore heels.  Cute spectator, beribboned, buckled, fancy HEELS.  I lived with Gigi for two years and she'd always tsk tsk my footwear as I left for work, "You'll ruin your feet." Heh.

It wasn't even like I was clomping for miles thru Manahttan, Carrie Bradshaw-style.  I would walk from my car to desk, the occasional copy machine/coffee run, and then back out to the car.  My feet were fine!  Or the endorphins from being happy 3" taller masked the ache.  Or maybe I had managed to sever all the nerves in my feet and couldn't tell the difference.  Anyway, this lasted for about 15 years (no one is allowed to do any math with that number).

I've mentioned we have flight benefits, yes?   This is the deal:  we can pay a nominal fee to fly on any airline, or pay nothing to fly on a couple.  But we fly standby - if there are enough paying customers, employees commuting, or any warm bodies willing to buy $5 mid-air drinks, we don't get on.  Matt can check availability so we know which flights to aim for, but those are the same ones still offering the best deals and sometimes they book up as we're waiting in the gate area.  

In exchange (apart from showing up for work), you can't look like a skank - or wear jeans.  I have no idea if this rule is enforced, but I've never wanted to chance it while the plane is boarding so I wear slacks.  And for the last 15 years I've worn heels with slacks.  Until our trip to Ireland when I spent 5+ hours investigating Philadelphia's airport and, well, m'feetsies hurt.  

Then, on our trip to Florida for my race - which I still haven't written about - I made a really, really poor choice of footwear when we went to the park.  No, not heels - I'm not that vain - but sandals, without any cushion or support for my xx year old feet.  They hurt by the end of the day and were sadly still sore the next morning. So then I ran 13.1 miles on them as punishment for being weak because I'm as masochist.  

They showed me though!  Nothing says revenge or kills vanity faster than the feeling of walking on broken glass. I flew home wearing my trusty black slacks & running shoes.  Nothing screams Middle Aged Woman like slacks & sneakers.  

And just in case I was thinking about calling that whole experience a one off, I pulled my Achilles the following weekend, which has meant a week (turning into two - frigging tendon) off running AND forced me to wear my new flats *gasp* at work... With slacks.  Gah.  And since I like chocolate too much to give up running, I need to keep my effing feet happy, which means I might have to permantly reconsider the heels.  Maybe.  We'll see.  Gah. 

This is, of course, exactly what Gigi warned me about 15 years ago.  With age and bunion surgery comes wisdom.

In the great circle of life, this is also what I want to tell this very pretty young med student.  She was wandering around Gigi's floor all day and my feet hurt just watching her (My heels aren't nearly that high or spikey).  And, although ICU is a scary place, time can also pass excrutiatingly slowly, so I entertained myself by taking this stalker-like photo for my blog.  I also want to tell her she's been watching too much House and ER (crap, I just realized she's too young to have watched ER) because no doctor I've ever seen IRL wears shoes like that.  With age and nerve damage comes wisdom.  

Day Two

Random thoughts as Gigi sleeps:
I'm surprised every time by how out of sorts I get in hospitals.  I mean, who doesn't, right?  But, while I wouldn't describe them as flashbacks, the door to the little closet in my head where I stash memories breaks, and I keep tripping over the emotional crap spilling into the hallway.

I remember looking over at The Girl, seconds after my c-section, as the NICU staff put an enormous oxygen mask over her face & told her to breath.  She did, obviously, but it certainly wasn't a natural hippy birth in a field of sunflowers.

I also think a lot about Brennan, still warm but not breathing.  Never going to breath.
Fucking hospitals.

I can't write about Gigi.  First, because she'd kill me and second, because this is really, really hard.

So on to lighter topics:.
On the way out I had to change planes in Las Vegas.  I didn't notice any ruckus but as we were boarding they were telling someone he wasn't getting on the flight.  Probably a frequent event in Las  Vegas but this was a short, middle aged accountant type in a button down shirt, not an inebriated frat boy.

There was also a curvy woman in a skin tight, low cut, butt-cheek short dress and bight pink hooker shoes.  She was right behind me in line so... I heard her on the phone asking her kids if they got their homework done, telling them to be good for grandma, and wishing them sweet dreams.  I am an asshole.

After a thorough study of the family amenities in several different hospitals' critical care wings, I can confidently announce Gigi's facility fails.  If I ever win the lottery I'm donating money to this ICU for better chairs.

Hug your families tonight.

Gigi

Gigi is in the hospital.  First report was that she'd fallen, which is significant enough at 94, but also that she was also only semi-conscious.  She'd fallen a couple months ago without breaking anything but was taking a long time to heal.  I don't know if it was because this was her second fall, the words semi-conscious, or knowing we were overdue for a visit but I put on my out of office greetings and told the boss I was going California.

Never have I been so grateful for Matt's flight benefits.  I drove home, threw god knows what into a bag and was at the airport with nary a thought.  My sister called from the hospital mid-process and said it wasn't just a fall, she had an aneurysm and bleeding in her brain.  Apparently it's a LITTLE aneurysm and brain bleed, as these things go, and she has improved, is talking & answering questions appropriately, but I'm sitting next to her in ICU right now and... well, she's in ICU and apparently has a DNR.  A fractured hip would have been better.  I don't even know what to say about the DNR.

I've spent time in the NICU, PICU, and now the ICU, watching people I love sleep with one eye and their heart rate monitors with the other.  Not exactly a trifecta of awesomeness but we are very very fortunate - fortunate she's getting good care, that I was able to come here to be with her without pawning my car for a plane ticket, and that our family, for all its warts & blow ups, rallies when it matters.

We're also apparently damn lucky she's here at all.  She was on the phone with her bank when they heard a sudden clatter.  Instead of hanging up a probable dropped call, they called 911.  Her neighbor rode with her in the ambulance and knew to call my dad.  Much as I don't like most of them much of the time, people matter.

If y'all have been reading along, you'll know I'm not religious and wouldn't know a prayer from a telegram (I'm going to hell for sure) but if you want to send some warm healing thoughts out into the universe, I wouldn't mind.  This blog exists because Gigi got a computer one Christmas and it was easier to post her great-grandchildren's pictures on line, then to print & ship.  Laziness, the seed of every great idea.  

Traveling (part one, hopefully. No promises because...obviously)

...Where were we?  Oh yes!  After 10 years of domestic isolation, Matt & I were happily forced to renew our passports.  Matt's oldest friend was getting married in Ireland and thanks to Matt's flight benefits & my dad, who agreed to mind both our two and four legged minions, we were able to make the trip.

Matt left early and was there for a full week, drinking his way across Eire in what might have been the longest bachelor party ever.  I played single parent for a few days without needing a plumber or ER room (success!) and didn't begrudge him the time - except when I had to reach him on his cell at $1/minute to sort through our new insurance options.  He had just finished a tour of the Jameson whiskey plant.  It was not a productive conversation.  Matt is, however, now an official Whiskey Taster with a Certificate to prove it, so if I can get my $5 back, we're all set to go buy the proverbial coffee and some aspirin.

My flight east was uneventful (aisle seat! no neighbors!) but Matt picked me up from the airport in his brand new rental car and immediately tried to pay for the trip by collecting my life insurance.

"Drive on the Left!

Leeeffftt!

LEEFFTT!"

Recovery

We hit a pub in Dublin that night to recover, met one of my dad's friends for breakfast the next morning, and then had exactly 32 seconds to sightsee before leaving for the west coast.  Lucky for us it was just long enough to catch a leprechaun.

Maybe?

The wedding was in an amazing 16th century castle, complete with its very own Irish Wolfhound.  There was a cocktail reception the first night, then everyone took off for more pub crawling.  We had great intentions to Party Across Europe but we'd skipped lunch so grabbed a bite in the oh-my-goodness-amazing hotel restaurant.  All motivation disappeared somewhere between the 4th and 5th course, and then they served something involving warm chocolate and Devonshire cream for dessert that was a breech of propriety to eat in public.  We didn't make it out that night.... but sadly because we were too full to move, not for any more interesting reasons.  Please don't revoke our passports!

The wedding itself was perfect - elegant, warm, sweet, funny, & full of love.  No white dresses though.  Theirs isn't my story to tell but they met just after Matt & I got married - which was a long, long, long time ago.  And while they didn't necessary need to travel across the pond to make it official (though I'm thrilled they did - Castles!  Wolfhounds!  Guinness!  On tap!), I find it pretty asinine they didn't have the option to do it at home.  The only thing undermining my marriage in the process was Matt's driving.  And maybe that chocolate dessert.

So there.  Lecture over.  Congratulations you two!

Oh, wait!  You knew that was too easy, right?  Naturally, there were shenanigans getting home.  We had to leave at 3o'clock the morning after the wedding, which somewhat limited the festivities, and I ended up dropping Matt off at one airport then driving cross-country on maybe 2 hours of sleep to get to a second airport.  Which all would have been fine, except I later learned my dear sweet spouse flew home in first class.  I?  I flew home in coach in the MIDDLE seat (of FIVE!) and then nearly got stranded in Philadelphia.  That part wasn't so good for the marriage either but the lifetime foot rubs will probably help. 

More recovery. 

Or, Gratuitous Booze shot

 Requisite Thatched Irish Roof Shot

 Requisite Armor in the Castle Shot

Completely non-Standard Massive Picture of a Dog in a Feather Boa, 

Hung mere feet away from the Requisite Castle Armor. 

Loved this place! 

Requisite Shot of the Rock Wall My Husband Nearly Drove us Into.

Heelllloooo!

I haven't disappeared, promise!  Since last post - oh, jeez, has it really been since November? - in no particular order, Matt & I went to Ireland for a gorgeous wedding, it took me 20 hours to get back home, I was seriously jet-legged forever, I had to do penance at work for having the unmitigated gall to take time off, Matt got sick, work was intense, The Boy got sick, I got sick, work was intense, The Girl caught a cold, I was still sick... and work has been, a-hem, intense.  Throw in a little SAD, complicated by The News, a lovely case of writers block, a not so nice case of SAHM jealousy (More time! I need more time!), and here we are.  At least I'm posting something this month, so December's archives won't be empty, but my something will be in the form of grainy digital images.

~~~~~~~

Merry belated Christmas!  As special days go, it was exceptionally low key this year, for the reasons above.  Matt usually puts enough lights up to drain the power grid, but this year went bare bones, just enough to fend off allegations of atheism.  And no one felt like eating (or cooking) on Christmas day so the kids nibbled on some sweet potato and we called it good.  But we were together, Santa came, and there was ribbon.

And there were cookies for breakfast.  

 She was All About the presents this year.  

 The Boy's Christmas jammies... from maybe 4 years ago?  

Laundry was something of a challenge for us this month.  

 These dimples are all I need for Christmas, ever.

Matt went low key on the lights, but he did all the communicating 

with Santa this year so Mommy was 98% Thrilled.

Least Exciting Present, Ever.  

AKA, the magic of photography.  Don't they both look fascinated?

Mommy was being practical & suggested some new kiddie sheets to round things out under the tree. You know - planes, trucks, dogs, Spongebob, something fun.

Santa pick blue stripes.  

WHOO-HOO!

Santa found a drum set on sale & ignored mommy's reservations. 

Santa may lost his flippin' MIND. 

He will shortly lose his hearing.

Ho Ho Ho!