It was a ranch and there were no balconies

When my Gigi bought her home just after the war, the lots near the ocean and the tree heavy lots inland were about the same price.  She wanted trees.  This was something of a family joke because the ocean lots, as you can imagine, fetch several decimal places more today.

(She also briefly owned a Duesenberg.  Yet another lost inheritance.)

I had a dream my dad decided to keep and restore Gigi's home.  Except now a bedroom balcony overlooked deep water and in my dream I sat near her and watched orcas and sharks and dolphins swim below.  I could hear my kids running thru the house.  It was beautiful and I was at peace. 

A month or so ago Matt was in Los Angeles and drove by Gigi's.  The new owners have turned my grandmother's classy Cape Cod into... a garage.

(Apologies for the jigsaw - Matt had actually taken a video and my photo editing skills are, um, lacking.)

They also posted pictures online of a new surgical center where Gigi used to craft her meals.

At the end of my dream a massive wave crashed over the balcony.  Change is hard.

Through the pink

Matt & I have both been working long, intense hours lately, culminating in a not very healthy or productive "discussion" about who has been doing what domestic chores.  Good times!  Then he left for a two week long business trip.

The first day he was gone I overslept by two full hours.  The second day my car wouldn't start.  That night the dishwasher nearly exploded, forcing me to manhandle the much feared circuit breaker box.  As my Gigi liked to say, "That'll learn ya."

Yet in the midst of all the chaos this month, I have been gifted moments of peace.

A rare walk thru the early morning drizzle with my wolf-like puppy.

These two, always.

Even these times.
Actually…. especially these times. 

Buying groceries, a much loathed task, and finding the oysters my Gigi always bought.

My drive home through pink light.

There was also a recent moment when I fled my desk, this stack of paper, and the inane, incessant late Friday chatter of my co-workers.  I walked into the break room just as the rainy clouds parted and the fridge stopped humming.  The sudden sun and silence were damn near spiritual.

It is a mystery to me why these moments come - what slight shift in the brain chemistry allows me to find beauty in fleeting moments while other days I'm left gritting my teeth and slurping coffee.  Perhaps I'm being too cynical in assuming it is chemical, and should just be grateful my cold, old heart can still find magic in the world.  Even on the odd day.  

A toast -

I was never a huge fan of corned beef but I'm a sucker for anything that'll go in a crockpot & there are those pesky traditions to honor.  Though we made Reubens, not potatoes, and I skipped the sauerkraut.  

Happy St Patrick's Day. 

Gigi would have made a massive spread with both red and green cabbage, and homemade sauerkraut.  She loved to cook elegant, complicated meals and I am always a little ashamed on those nights my children end up with a sandwich or scrambled eggs. 

Not that she was perfect, of course.  She once brined a pork roast till it nearly crystallized and one St Paddy's day dinner forgot the cabbage. The horror!  We were all too polite to say anything, for which we were roundly scolded later, but she did laugh about it - several years later. 

I don't know if it's genetics or a sub-conscious twitch but I've forgotten something at every dinner party I've ever thrown.  Let's call it an homage to my elders (& not what it really is - poor organizational & time management skills).  Every time it happens though, I think of Gigi's cabbage and laugh.  

There is family drama in settling Gigi's affairs & people are behaving poorly.  The fact that she hasn't actually returned from the dead to shame them has killed any lingering hope I might have had in the afterlife.  My faith in the living has always been shaky, I just hate it when I'm right. 

But despite the salty meat and family shenanigans, tonight I ate corned beef, drank Guinness, thought of my Gigi, and smiled. 

Beautiful young people are acts of nature, But beautiful old people are works of art.

The Old Man and the Sea

Almost immediately after his mom (Gigi) died, my dad left for the sea.  He'd bought an older sailboat about a year & half ago but family shenanigans ensued so it's sat in various shipyards across Europe ever since, getting cobbled back together as time & money allowed, and while on breaks from taking care of Gigi.

But then she died and he sailed from somewhere in Spain to the Canary Islands, to Cape Verde, and then finally west across the great blue ocean.  He was supposed to be emailing coordinates daily (Technology!) but one day Matt pointed out that we hadn't heard from him in a while.  We proceeded, as people under stress are wont to do, to argue about whether we should, in fact, be worried.  Really argue.  Which was asinine because either one is or one isn't, much as my dad was either afloat or not, and there wasn't a whole hell of a lot we could do about it ten thousand or so miles away.

Cape Verde

I confirmed he'd actually left his last port and wasn't languishing in a Cape Verdian hospital or ditch, then decided he'd either lost the damn phone overboard or was just being uncommunicative.  A day or so later he emailed and was fine.  Technology glitch.

Oh.  OK, then.

The very same day he wrote, a friend of mine called - she knew my sister went to Purdue and had I been watching the news?  Noooo, I was home with the kids on one of the 256 snow days they've called this winter.  There was a shooting.  Another damn shooting.  I called my sister, the phone picked up, and there was crackling - like little firecrackers (or gunshots).  Then the line went dead.

I died.

No, actually, that's not true - in one of those surreal, slow pan, rising music moments I actually thought that there was no fucking way THAT just happened, so I texted her.  She wrote back immediately - and the world kept spinning - she was in class and couldn't talk because even though the building was on lock down her professor was plowing forward.  Linear algebra is important, yo.

Oh.  OK, then.

Exactly one week later my brother received a clearly auto-generated text with coordinates and this mysterious line, "Accuracy Horiz: +/- 8 m Vert: +/- 32 m".  Thirty two meters, for products of this great American school system, is about 105'.  A hundred foot wave would be…. something.  But even if they weren't Perfect Storm big, a 210 foot "accuracy" swing certainly suggested rough seas, right?  And why the auto-text?  One island couldn't be reached, we assumed because of the storm that had just passed thru.  My brother swung into action, various nations' Coast Guards were notified and a pleasure cruiser was even diverting.  I spent all morning at work trying to figure out how to confirm his Epirb had, actually, gone off.  This time I thought it was real and I tried to imagine what a little boat might do in 100' seas.  So this is how it happens.  

And then he called.  Guess what he just figured out his sat phone can do!  Auto-texting!!

Oh.  OK, then.

And these are just the highlights.  There has also been car drama, the aforementioned 256 snow days, the resulting employer dissatisfaction, plumbing trouble (and not the fresh-water-from-the-shower kind), and GI upsets. There has been too much eating, not enough running, not enough pictures, and not enough wine.  Never enough wine.  (There was quite definitely too much coffee.)  There has obviously been no writing.  I'm not unhappy but I am so, so very tired.  Tired of the cold, the angst, and of my pathological inability to balance family, work, and me.

But there have been lots of snowy PJ days, movie nights, and hugs.  There have been stars rendered in Play-Doh.  And, at one point after we were washing the dog and the carpet and the child, who had all intersected in a Bermuda Triangle of Poop, I started to laugh.  What else can you do, right?  

You can go sailing.

Gigi.

Hello there.  I didn't actually intend to take an internet break, but the stress level at work had hit crisis level so I buckled down, hoping if I put in enough hours I could breathe in 2014.  Then there were the usual winter pathogens, Matt went to Montana for a week for work, and in the few quiet moments I had I, frankly, ended up watching a lot of TV because it required no conscious thought or social pleasantries.

Also, on December 4th, the day before Nelson Mandela died and 11 days before her 95th birthday, my Gigi died.  My dad called me that morning at work but I didn't leave or collapse dramatically onto the floor.  The holidays weren't cancelled and the laundry hasn't stopped.  But I can hardly bear to talk about it - not with Matt, not with my various siblings, and certainly not during holiday parties with well meaning relatives.  I don't want to read sweet condolence notes or discuss memorial plans.  I'm holding this in a small tight ball deep in my gut because if I expose it to light it might just crumble to ash and blow away.

There is so much tragedy in the world, so much injustice and violence, no one will be especially moved at the death of someone nearly 95 years old, nor my grief thereof.   Mandela was celebrated the world over but no one said he passed too soon.  We all leave, eventually, and she had lived well and long.  She would have preferred to die last January, after her aneurysm, but she died peacefully in her home, cared for and loved.  There was no news coverage, no presidential musings, but my world has shrunk and darkened.

Ironically, despite living in Los Angeles for 60 plus years, she loved dreary, rainy days.  She would have loved Seattle.  

A friend of mine, facing her own loss, quoted Kate Braestrup, "One hundred percent of all relationships end: paternal, maternal, spousal, avuncular, friendly, or filial; one way or another, you will lose everyone you love, everyone you cannot bear to lose. 

Everyone you cannot bear to lose.  She was my rock and safe haven.  I moved around so much as a kid my most vivid memories are actually of her home, her magnolia tree and camellias out back, her favorite chair, her every room.  Even the 7-11 at the bottom of her hill.  She could whip up a gourmet dinner out of nothing and was the only person ever who could cajole me into eating broccoli.  Because of her I believe in the transformative power of garnishes - even her simplest meals were beautiful.  Just add parsley.  Maybe a slice of lemon.  

I recently finished the second to last jar of her plum chutney.  I can't decide whether to save the last jar in perpetuity or eat it alone, strait, in my closet.  I made bacon and for the first time saved the grease, (though my sister will be happy to know it's in the fridge - Gigi's jar was kept under the stove).  I drank a gin and tonic, her favorite, out of the fancy glasses she gave Matt after our trip together to Ireland.  I did not do anything on her birthday, except pretend it wasn't.  I sent out cards this year, for the first time since 2010, and updated my address list but couldn't delete her name.  I kept thinking I'd forgotten someone when Christmas shopping, and kept staring at my lists, until I realized it was her.  She was entirely impossible to buy anything for. 

Ireland, 2000

I just realized my daughter squinches up her face just like Gigi when she grins.  

I cannot bear to think what will become of her house or her beloved lemon tree.  And I suddenly understand why relatives become grabby after people die.  It's not the money, it's the need to cling to what's left, to grab the shadow before it fades.  Salvaging her house isn't remotely within our budget but I wonder if she'd parceled out her cookbooks, her drawer of clipped out recipes, or her little broiler.  She'd been labeling stuff with her grandkids' names for years, planned bequests via sharpie & masking tape, but I doubt she thought what I'd treasure most is the memory of our meals together.  

Braestrup continues with, "One response to this appalling reality is to posit the existence of heaven, a place where everyone gets to be together again, just like the old days...In the meantime, however, what are those of us still here on earth to do in the face of loss?...Love more. Start with your siblings, or your spouse, or your parents, but don't stop there. Love whoever needs what you have; love the ones who have been placed in your path. It seems so obvious, doesn't it? It is the kind of knowledge we all should know, and instead even the wisest need reminders. Fortunately, the reminders do come, from sages and prophets and out of the mouths of babes: If your heart breaks, let it break open. Love more."

I could tell you what an extraordinary woman my Gigi was, but it all fades next to the fact that this was how she lived.  My dad, one of the least saccharine people you'd ever meet, wrote she "had absolutely no quid pro quo about life.  You just felt love.  All give, no take. A lesson for us all."

Dammit.

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 School Post

I've been wanting to write this for months but I'm afraid I won't be able to do it justice.  I'm afraid  this wordless feathered thing of mine might fly off and leave just another IEP post in its wake.  This is not just another IEP post.  This is about the closest I can get to giddy.

Early last year I called an IEP meeting to discuss the preschool's shameful inability to communicate with my child.  That was... unsatisfying but they asked at the time if I'd thought about kindergarten yet.  The Girl's birthday is exactly four days before the kindy cut off so, although they stressed seventy kajillion times it was a "team" decision, at least they wanted our input.   This sparked 8 months of ifs, ands, & buts.  If you are one of the lucky three people I didn't force to listen to my tail chasing, these are the pros/cons:

• The preschool was underwhelming - we could get better teachers in kindy.
• They could be worse.
• She's in day care in the afternoon anyway, might as well spend that time in an educational setting.
• Kids learn best thru play - we should let her Play!  Explore!  Un-school! 
• She already knows all her colors & letters - we should build on that!  Neural connections! Learning is fun! 
• She'd be awfully young for kindy anyway, add in a developmental delay and it's akin to putting a three year old in kindergarten.  NO child would succeed in that situation.  We're setting her up to fail & she'll never ever ever end up "mainstreamed".  (*dramatic hand waving*)
• I read this book a while back and it argued for delaying kindy as kids learn best when they're emotionally mature enough to learn.  
• That book was about typical boys.  It might also be total BS.  Zero relevance.  
• With all the money we'd save on day care we could retire buy groceries afford more private therapy.
• Two words:  potty training.
• One (& a half?) more:  non-verbal
• Mah baaayyybeeee!

Amid the hand wringing, I chatted with the pre-school principal.  He reminded me The Girl could be eligible for school till she was 21.  That's about 8 years of high school.  Eight years of high school sounds like a special form of hell and pushed me straight into the "delay kindy" camp.

Fast forward to this spring.  We have to have an official "transitional" IEP with the kindy folks. Because I'm always polite (*HA!*), I did not kick them out of the room as superfluous even though Matt & I had already decided against.  I brought cookies so they might as well eat.

The SLP didn't show up.  Awesome.  Because we're clearly not at all concerned about her speech.  Gah.  The pre-school teacher said almost nothing.  We later heard she quit the next day.  The principal, who I'd liked during our call but hadn't attended any other IEPs, revealed himself to be a massive doufus.  He wondered aloud if The Girl's speech might be affected by a structural/palate issue. He pointed to how messy she ate as evidence.  (Dude. We've run thru 2 school SLPs, two private, had an additional outside eval, AND the surgical nurse at Children's knows us.  You think we missed something?  Also?  Thanks, yes, my child is a sloppy eater.  Ass).  He also wondered if she had anything to say.

Read that again.  He wondered if my child had enough cognitive function to, say, ask for "milk".

Meanwhile the elementary school's SpEd teacher, SLP, & company were asking awesome insightful questions, drilling down when she could do what in which setting.  Asking if we'd tried this or that.  They reminded the principal I had already said she was signing in full sentences and clearly had much to say.  They talked about iPads and multi-modalities and the pros and cons of various approaches.

They said, "We can develop an intensive speech program for her".
They described it like 8 hours of speech therapy/day.
They talked about peer modeling and the benefits of inclusion.
They said, without asking, she'd have a 1:1 para and they'd teach the para all the signs she already knows.
They said, "We want her."

Kids, my girl is going to kindergarten.



I'm at Gigi's this week (Hence the post. Shocking!  I know).  I remember playing with this glass bird when I was a kid.  Miracle it wasn't broken.  No feathers, but here's to strength & fragility & hope.

Rambling

The weeks have been flowing by so swiftly I'm starting to lose my footing.  Emails aren't sent, errands are forgotten, FB is ignored (the horror!), and I'm certain I still must be only 33* or so but next month I'll have yet another birthday and my brief time on this planet is that much less.  In the movies they always show those quick short cuts of daily life - happy, sad, or otherwise...work, commute, dinner with the kids, repeat - right before the calamitous plot twist.  Daily life, interrupted.
    *I'm no where even close to 33.

Let's hope for no more plot twists.

But we need a little bit more life around here, yes?  Daily life, elevated & constructed into something blog worthy?

Shall I blame the job?  Maybe.  Given the choice between staring slack jawed at the second hand as it sweeps around from 4:59, and the current all consuming "Hell, how did it get to be 4 already?", I definitely have the better deal, and it's not always this busy, but I am d.o.n.e. when I get home. 

But it hasn't been all work.  The boy & I have been reading Harry Potter together at night - two weeks ago we reached the end of Book Four, I turned off his light, then I abandoned all restraint and spent the next 4 days reading ahead to the end.  Not to worry, the kids were perfectly happy eating cereal & PB&Js, and I'm sure they they picked up some valuable life skills in my (emotional) absence -   don't keep PB in the fridge!  Also, if I know you IRL, I apologize for the recent heavy HP references.  And last?  The book made me a wee bit sad for all the moms, me included, who couldn't keep their babies safe with the magic of love alone.  Leave it to me to get weepy over a kids book.

What else?

On Friday I hit another work-i-versary and was gifted with a bunch more vacation time which I immediately started burning by flying to Los Angeles to see Gigi.  She's not doing well and she is quite explicit about wanting to leave us.  I find it hard to reconcile these two ends of the disability spectrum - my daughter, just starting out, and Gigi, who was ragingly independent for over 90 years and is suddenly, profoundly not.  Her heart is strong and her pain is, we hope, well controlled - I believe her wish for an end is a direct function of her lost independence.

There's obviously no easily framed picture of disability.  Everyone draws their own lines of what is and isn't acceptable, of what is and isn't compatible with life.  Decent people don't try to inflict their lines on others and I suspect most find the line to be a mirage anyway - if they get up close it dances off again.  You adjust, adapt, and find joy where you can.  I don't know where I'm going with this...  It strikes me as naive to wish a 94 year old woman rally but her new world isn't dramatically different from those of several children with significant needs I follow here on the world wide web and, well, it's difficult.  I want to respect the feisty woman she is, I think she's earned the right to go out as she sees fit, but there are great grandchildren to admire, the smell of toast in the morning, and the sound of the wind in the eucalyptus trees in her backyard.  

Whatever we did is no good

The last two-three weeks have been rough.  Really, really rough.  In bed by 9, still exhausted in the morning, teary-eyed and unable to concentrate at work rough.  Beyond brief random sobs in the car, well into crying in the shower and at "My Little Sunshine" rough.  I've made it in to work though, and my kids are still getting dinner and stories, so...  that's something.  

I've never tried anti-depressants.  Don't get me wrong, I'm not exactly a beacon of sunshine - I've been offered them several times, but every time that soul sucking blackness was an appropriate response to a really crappy situation and I've muddled through.  One time I even made it to the point of seeing my primary care doctor, but he mentioned weight gain and reduced sexual drive so I cut him off.  I didn't think staring at a broken scale while Matt complained about nookie was going to cheer me up.  

I know anti-depressants have saved a lot of lives and if your brain isn't pumping out enough endorphins or serotonin, or whatever it is that makes getting up in the morning possible, then by all means, fill your script.  I don't see the difference between them and insulin and I'm not judging.  This is just about me.  

My occasional bouts of angst and "Holy crap, is it only Wednesday?" feelings are 86% attributable an impossible to do list, self-inflicted financial woes, and my inability to survive on 4 hours of sleep a night.  I've never considered that a chemical imbalance, it's just life - One night I'll work late to satisfy the boss, the kids get extra attention the next night, and sometimes, maybe twice a year, I'll stay up late to vacuum.  I aim for balance, sometimes I trip, but the sun keeps coming up.  The other times... well, the sun has a nasty little habit of rising those mornings too.  

But this month... it has been too much.  Gigi's recovery has been bumpy, with some really disturbing phone calls (though she's home now, with help).  Multiple couples in the extended family are divorcing, including one in the not-so-extended family that has resulted in some really disturbing emails.  And one of my very favorite people lost her granddaughter in almost the exact same way I lost Brennan and that has brought me to my knees.  Just felled me.  It's been eight and a half years.  You'd think some scar tissue would have formed.  It has not.  The bandage was ripped off and the blood and tears are drowning me.

Her granddaughter and my girl share a name.   

Emily Rapp just lost her son too, nine days ago.  Just after posting my sad story a few years ago, I read this line of hers, "[It] felt straight out of a Victorian novel:  I was hysterical, inconsolable, stricken.  I had the urge to run down the stree in pajamas (for lack of a period nightgown) tearing at my hair and wailing."

I remember one person telling me, after I'd lost Brennan, that they would have ended up committed if they'd lost a baby.  There was a suggestion, in that comment, that my grief was somehow lacking, because I didn't end up in a padded room, or running down the street half-clad.  Or medicated.  Lacking because my grief is conveyed in a series of unfinished sentences trailing off in an excess of ellipses and not the actual rending of garments.  I did, while on my mockery of "maternity leave", have a couple very strong martinis, very early in the morning, but I remember deciding several days into that experiment that it wasn't going to do anyone any good if I became a full blown alcoholic.  We also didn't have enough vodka.  

I've thought about getting blitzed again, this month, but a second drink is about all I can handle.  Even my self destructive streaks are lacking.  And just in case I was thinking about trying harder, Matt and I just watched Flight - I clearly hadn't been paying attention because I thought it was going to be a fun plane crash/thriller (we made popcorn!) but it turned out to be a bleak look at what happens when people start on their 4th drink before breakfast.  

The film was loosely inspired by Alaska Airlines Flight 261 which flew, inverted, into the Pacific thirteen years ago.  I remember reading the transcript in Harper's, linked here, when it was first published, back before children when I still had Harper's delivered and had time to read it.  It took those men 81 seconds to fall out of the sky and they kept trying to fix it.  They flew the last full minute of their lives upside down, dropping over 13,000ft/minute and they did not blink.  That, my friends, is composure under duress.

I did not remember the transcript correctly though, as I could have sworn the pilot said goodbye to his mother.  Turns out that was actually PSA Flight 182, which had crashed years earlier just a little further south in San Diego.  Knowing they were going down, knowing the little black box would pick it up, the pilot's last words were for his mother.  

The little bit of ground I have been clutching at this month are my girl's first words.  Technically, 'word approximations' and really just the one word - the only one I've been waiting four and a half years to hear.... Mommy.  Said with more B and P than the spelling might suggest, but said with delight, joy, and emphasis.  There is no question what she's saying or who she's talking to.  Mommy! 

This, of course, makes me cry as well.  Cry with joy, but also because there is another mommy out there who won't hear those same words of grace.  And maybe my girl picked this month to start saying Mommy for all the little girls out there who can't.  I have no words of comfort for my friend's daughter, because here I am crying eight plus years later for both our losses and I can't tell her it will ever hurt any less.  I know the sun will come up tomorrow, because it can be bastard that way, and I can tell her that I survived, even after flying inverted.  But I can't tell her how to move thru the next hours or days or years.  I don't know if what I did was any good, or if it would work for anyone else.  I don't know what the goal is, other than to stay standing.  I don't know what to do. 

So I sent flowers. 

Way to Teach Your Children New Vocabulary

Update:  Gigi moved out of ICU yesterday, and into a “regular” room. Her MD also recommended even more PT so we’re now in pure recovery mode.

~  It finally happened.  I drove halfway to work this morning before realizing I didn’t have any shoes.  I usually drive barefoot so the fact that this hasn’t happened before is a testament to the mountain of shoes I keep in the back seat except I cleaned out the car this weekend my competence and organizational abilities.

~  Both kids were tired on Sunday and I shuffled them off to bed early with nary a protest.  I was nearly delirious with the freedom a 7:30 bedtime brings when The Boy suddenly reminded me he was student of the week and we had to fill out a bunch of 3x5 survey cards and find recent pictures of the family/his pets/himself.  Efffff…  Except that’s not actually what I said.  The Boy was highly amused.

~  I also recently nearly hanged myself on a car door:  I had The Girl with one hand, got her backpack with the other and was trying to elbow the door shut when she tried to bolt across an active parking lot.  I lunged after her but had shut the door on my scarf and got stopped like a bad dog on a leash… tragedy was only averted through a surprisingly sturdy inch of the fuzzy stuff on the edge of her hood.

~  The Boy was horrifically, negligently overdue for a dentist appointment.  I called to schedule it and made a crack getting in before Social Services showed up.  The lady was not amused, “Mmm-hmmm.”  I take my childrens’ dental health seriously.  I do.  But please see above – I’m lucky if I show up to work with shoes.

On Therapy

Update:  Gigi is still in ICU but is doing much better and has started Physical Therapy.  I flew home Sunday.  But my dad and uncle have been with her, my sister is taking this weekend, and I’ll go back out next weekend.

Gigi’s PT is timely in that there’s been quite a bit of discussion on line lately about therapy and ableism. There was a discussion on FB a couple months ago that I chimed in on, followed by this blog hop.  In short, if you haven’t been following along, some parents argue all the various therapies we inflict upon our child are a convoluted, albeit well-intentioned form of ableism.  That, in our efforts to “normalize” our kids, we are just as unaccepting of their differences as the twit in the Houston restaurant.

I get it, I do.  Therapy is a massive black hole of time and money and there is rarely any immediate payoff.  There are strange people in your home who know you only run the dishwasher when you run out of coffee mugs (and we own dozens of coffee mugs).  There may not be any pay off – your kid may never end up walking, talking, or reading.  You may have just spent $10k a year on the biggest healthcare scam since they touted apricot seeds for cancer.  It’s also quite likely that your kid would have ended up mastering most of these same skills eventually in their own time, therapy or no.

So why bother?  Why not just take your kid home and love them, let them run around with their siblings and the pets and pick things up on their own?  If they don’t - if walking, talking, and reading doesn’t come naturally – if you really, really loved them it won’t matter to you.

I work full time.  More than full time, mostly.  I am the antithesis of the helicopter-/Tiger mom.  My kids get almost no after school activities and I expect them to play independently when we’re home.  That said, I am their mother and it’s my job to ensure they learn to navigate the world they live in.

Do I “teach” them to navigate their world or do they learn?  I didn’t have to “teach” my son to walk or turn doorknobs.  He figured it out on his own, thru exploration and observation – and for years after would climb into our bed in the middle of the night.  Hoping to avoid a repeat of all that headkicking snuggling, I purposely hadn’t worked on this with my daughter.  You know what?  She figured out those doorknobs all by herself.  She figured it out a couple years later than her brother, but she got there in her own time.

Did all that OT help her? Help strengthen her fingers and fine motor skills?  Did it speed up the great Doorknob Benchmark by 6 months?  A year?  Or, had we gone au natural and therapy free, would she still be stuck kicking her door in the morning, demanding freedom and breakfast?  Who the hell knows? Who cares?

Well, I do actually.  First, she was frustrated because she was awake, wanted the day to start, and there was a door literally closed to her.  Second, she really was kicking the door and I didn’t want to have to buy a new one.  I can make a good case this frustration led to her increased focused on doorknobs and this coalesced with her developing manual dexterity, finally allowing her open doors, but there is not a doubt in my mind that the hours of pushing, pulling, & pointing in OT got her finger strength and fine motor skills to the point where she could grip and turn the knob.

Do I think of this as normalizing behavior?  Would I value her less if she still couldn’t open the door and had to keep kicking? (Depends – what do new doors run?)  Do I find her less disabled because she can open a door 6 months earlier than she could have sans therapy.  Bullshit.

In my old age I have taken up running.  When my brother signed me up for my first half marathon I hadn’t run more than 3 miles in probably 15 years.  The most I’d ever run was 6, and that was while I was in the LAPD and there were guns involved.  I wasn’t going to end up running 13 miles sitting on my ass in my living room – I had to practice.  I started with 1 mile on day one, went 1.5 the next week, and 2 miles the week after…. My muscles slowly got stronger and my lungs more efficient (sadly, said ass has not shrunk).

Gigi is 94 years old and has had a rough week lying on a hospital bed.  She needs support as she starts to stand and move around again.  As devoted as her sons are, her physical therapist has more experience teaching older patients how to safely navigate corners, stairs, and use a walker.  Would Gigi regain strength on her own?  Probably – she is one tough lady – but she loathes hospitals and wants to go home.  She wants her independence back.  PT will get her there faster and safer.

Everything I’ve read about Down syndrome suggests most kids will master the basics but it will take them longer and require more repetition.  They will need to practice-practice-practice.  Reading will come, but thru sight words - seen, shown, reinforced and repeated a gazillion times – not thru phonetics.  Do I not bother to teach my girl to read because the process won’t be as natural as teaching my son what sounds the letters make and letting him loose in the library?

I don’t think of therapy of anything more than practice time.  I can’t imagine how it equates to breaking a child’s legs to make them an inch or two taller in adulthood.  As a working mom, I find a concentrated hour of practice time to be critical – if I were home all day with my child I could sting beads and build blocks with her to the same benefit but that’s not my world, so we have to practice when we can.  One mile at a time.  And that moment is not at home, exhausted after 10 hours at work & day care, while the spaghetti cooks and I’m rooting around for a coffee cup to put my wine in.

I am not teaching my child to be normal.  I’m trying to teach her – yes, in hour long increments if I must – how to be independent.  I wanted her to walk as soon as she could, not because I gave a flying fuck about the milestone, but because as soon as she started walking, she could find her own toys, come give me hug, and empty out the cabinets.  That is “normal”, but it also opens up a whole new world for her to explore.  Her little neurons started firing faster when she was able to rummage thru her toys and select the best one, when she learned to seek me out for a hug instead of just yelling, and when she learned that banging lids and pans together for 20 minutes would convince mommy to turn on Signing Time.  

Of course I’d like her to be “high functioning.”  It will, to be perfectly blunt, make her life easier - but her father and I won't value her life any less if she weren’t.  A girl capable of manipulating her own zippers & buttons with all those frequently practiced fine motor skills will require less help and put her at less risk in bathrooms away from home.  A girl capable of clearly communicating with doctors, police, teachers, and Starbucks baristas will find the world a safer and more welcoming place – that's a sad reality but it's true.  There’s no guarantee of happiness, but there are a lot fewer things that can go wrong.  I won’t love my daughter any differently if she never masters buttons or starts talking – if she ends labeled “low functioning” – but I’m not going to not try to teach her those skills, even if we have to do it repetitively, one hour a time at $95/hr.

Full disclosure – we’re actually only doing private speech therapy right now.  I wish we had the money and time to do more.  Not all of our therapists were effective.  We changed.  My advice for newer parents is this:  If you are so overwhelmed with your therapy schedule, cut back.  Take your kid to a park or let them rummage thru your cookery instead.  I once read a parent who wrote they wanted to be their child’s parent, not their therapist.  You don’t have to be their chauffeur either.  If you are starting to feel like your kid is a project, change something.  Therapy is a tool, like any other, and if you don’t like running on a treadmill, try the sidewalk.

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.  

Montana!

During the blogging desert that was August, we went to a family reunion up in Montana.  I'm not sure what we did the rest of the month but I'm pretty sure I can get at least 2 more posts out of this one weekend, so that sort of counts, right?  Maybe even 3 if my sister sends me the photos I took on her camera (hint! hint!).

Montana is a breathtakingly beautiful state, complete with real life bears in the woods AND dinosaurs in the airport.  What more could a kid ask for?

Oh, actually seeing a bear?  Sorry, buddy!  Will a T-Rex do? 

We DID see family.  Lots & lots of family.  Lots of family I've never met before and whose names I had a hard time remembering.  Have I mentioned that I'm not the most social of creatures?

But we also got to see Family, and that was priceless.

Of course, no Xxxx family get together is complete without a little drama.

Don't we all look HAPPY?  

No parental units were pushed.  Promise. 

But even despite the pits, there can be cherry pie.

Like quiet afternoons by the river

And newfound long lost 5th cousins.

And forts. 

And brothers and sisters.

And wild flowers. 

What's all this have to do with Down syndrome, you ask?  Didn't I announce 31 for 21 only yesterday? 

Nothing.  And every

thing.  Joy in unexpected

places, in family. 

Two men shrieking.

While sitting in any number of random airports this weekend I made a list on my fancy new phone of the 37 posts I've brilliantly scripted in my head - but then I was distracted by my travels and so, before sharing anything worthwhile (ha!), I wish to inflict on you the same feelings of horror and annoyance I recently felt.  Misery loves company and, oh, was I ever in such miserably close company!

Flight#1, STL-PHX:  Late booking so not only do I not get a direct flight, I am forced into the window seat.  I am a wee bit claustrophobic and don't so much sleep on the right or left side of the bed, but rather whichever side is nearer the door.  I find the window seat.... unpleasant.  Made worse by the exceptionally intoxicated large man sitting next to me.  He stank so badly of beer I spent two hours breathing thru my shirt.  And lest anyone is unclear, this was not the warm-bread-rising goodness at your local micro-brew & pub.  This is 24 hour bender/hadn't showered/frat boy with dirty gym socks stank.

But, revealing a disconcerting level of vanity on my part, I noticed he only tried to flirt with the blond in the aisle seat and not me.  It clearly must have been because her ability to plan ahead to buy aisle seats proved she was gifted with superior survival skills, akin to taking down the biggest bison, and not because of her pretty, pretty blond hair.

I'm still surprised they let him on the plane.  He was stumbling so badly he didn't so much return to his seat after a trip to the loo, as fall into it.  Yet when I got up he crawled up onto his chair like a 300# circus clown perched on the back of an elephant.  I don't think it occurred to him it would've been easier to just step out.  He was also wearing gym shorts and had an, ummm, wide stance.  Gross.  The plane was full so there was nowhere else to go but he didn't puke on me so that was good.  Also good was actually getting the chance to say, "Oh, HELL NO" when he started falling onto my shoulder.  I don't get the chance to say that very often.

Also good?  I'd left my wallet in my bag overhead (important plot point!) & decided I didn't want a drink badly enough to climb over him to get it.  The blond goddess on the aisle?  5 minutes later she got up and returned with a lovely G&T to replace my soda.  Dousing myself in my own irony alcoholic fumes did help.

I didn't know people like that existed.  I wanted to give her a hug but I'm not really a huggy person and that would have entailed reaching over the BierMeister.  What do you do?  Hi! Here's my card!  You have single handedly redeemed the entire human race in my eyes!  Want to have lunch next week?  I settled for about 30 obsequious Thank Yous and sympathetically rolled my eyes when BeirMeister tried to lean on her shoulder.

Flight#2, PHX-LAX:  I am pathetically grateful for the empty middle seat but the young lady on the aisle was wearing 12" high hooker shoes which she immediately took off, curling her bare feet up on the seat between us, and then she started singing.  Out loud.  Later she swapped life stories with the three people on the other side of the aisle and she was in that painful period during your early 20s when you have a Philosophy and wish to Share your Great Insights on Life.  None of which would have bothered me too much, since she was considerate enough to respect the universal sign of I am holding a book up 3" from my nose because I do not wish to converse with you, but her pants barely covered her lady bits and certainly didn't cover her red lace thong and so I spent an hour wondering when & how I had become the conservative old biddy in that scene.  Also, she was clearly tweaking, couldn't sit still, and I was worried she might puke.

[Two intervening futile work meetings and fabulous, fattening visit with Gigi & Others, to be covered later so you don't get bored and wander off]

Flight#3, LAX-PHX:  No talking, tweaking, or tankards.  Completely uneventful till we land when, before taxiing to the gate, some guy right across from me jumps up to grab his bag from the overhead.  The flight attendant starts shrieking at him, like that mom in Walm@rt who is mid-crisis and you consider following her out of the store to get a license plate to call social services.  He takes the guy's bag away and petulantly says he putting it in the back of the plane so the guy will now be the last one off the plane.  That'll learn ya!  The guy might've been a twit but I'm pretty sure I don't want to be at that flight attendant's door in the event of an emergency deplaning.

Flight#4, PHX-STL:  The otherwise presumably very nice gentleman in the seat next to me does NOT respect the the universal sign of I am holding a book up 3" from my nose because I do not wish to converse and insists on TALKING to me -  Quelle horreur!

But this flight I plan ahead and pull my wallet out in case I want to buy a drink (important plot point!) since I am once again in the window seat and am not above self medication.  But it's 10:30-11pm and I doze off instead (only to later wake myself with my own snorfling sounds - I am soooo sexy).  After we land I get aallll the way down to the parking shuttles before I realize my wallet is still on the plane.  And my phone was dead too, because I'd only pulled half of the 37 separate charger pieces out of the plug at Gigi's and my fancy new phone's battery has the half life of a squished gnat.  No wallet, no parking stub, no parking payment options, no way home.  No way to call home.  Awesome!  I head back to security but it's now midnight and they're all locked up.   So I round the corner to talk to the security guard... and he PANICS.   No exaggeration, he jumps up, shrieks at me to stop, and HIS HAND IS ON HIS GUN.  It was still holstered but holy crap.  I am a middle aged women in heels and a grey suit pulling a roll-y suitcase. 

[Though in fairness, those corporate issued pens can be lethal.]

If it had not been midnight & if I weren't worried about how I was going to get home, I would have found it hysterical but there was also something a little disturbing about that hand on his gun.  No, I'm not going to extrapolate this into a commentary on The News, though it's tempting.  And maybe I honed in on that because of The News.  Let's just agree that putting panicky people in positions of authority is a lousy idea. 

Anyway, I eventually found someone unarmed, who found my plane & wallet over in the cleaning hanger & I made it home by 1:30am.  I'd been excited to fly solo - no wiping up cracker crumbs or retrieving sippy cups or diaper changes in the 2' wide airplane lavatory - but lesson learned.  I'll take flying with my snotty, poopy kids every time.  Though this trip obviously provided LOTS of material, so there's that.