Wednesday, February 27, 2013

HUGs (HUnting the Good stuff)

These are the things that have made me laugh this last week or so:

No connection to my last post, this is The Boy, playing with Siri.  Poop happens.

The Boy, determined to contribute his fair share to the mortgage.  I told him I didn't think too many people would need their bikes washed in 30 degree temperatures, but he was not to be dissuaded.  I brought him hot cocoa because I felt bad he wasn't getting any business.

This dog.  Although he is most assuredly NOT a lap dog and was squishing me first thing in the morning before I even had any coffee.  Oh, the humanity! 

These pictures, from a cousin's birthday party.  

This boy.

These shoes.  Which my dad bought me when I was 17 and heading off to Germany.  I'm pretty sure they had matching shoelaces back then.  I think he thought I was going to be trudging thru the Alps, Heidi-like.  I ended up in suburban Hamburg.  That is my fancy office carpet and, yes, I did wear them to work but only into the building because we were mid-snow storm.  Then I changed.  I may be reconsidering the heels, but I'm pretty sure these violate dress code.

Tickle fights.  

The girls, um, bathing.  I think.  
Or the potty training is going better than we thought. 

Also:  Yesterday Matt was dropping The Girl off at day care when she puked all over him, in the middle of the hall, in front of the principal.  She'd gagged slightly, earlier in the morning, but Matt poo-poo'd it and I left for work.  I consider this a HUGE mom win as that could easily have been me and, well, that doesn't need any more explanation, does it?  It wasn't me.  She's fine, though I stayed home with her today (burning my second to last vacation day- oy!), but today she's all snuggles and no vomit.  

Last:  All your hugs and kind words this week, virtual & otherwise.  

Monday, February 25, 2013

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. 

Tuesday, February 12, 2013

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.

Sunday, February 10, 2013

On a lighter note

I convinced Matt to watch Downton Abbey with me but had to sign up for Netflix to get the first season.  First month is free but I was thinking we could squeeze the subsequent $8/month out of our budget.  I was crushed to learn, however, that Netflix doesn't carry Justified, any of the Harry Potter movies, or any Oscar contender since 2005 (when The Boy arrived and squished our high flying movie going ways).  They do seem to have a lot of the classics so....  old school movie recommendations?  I've seen everything Humphrey Bogart has ever been in, but my cinematic education dropped precipitously off thereafter.

Assuming y'all come up with some great ideas, I'll try to max out my one free month but... this might have been a terrible idea and I should probably cancel it immediately - Matt & I watched the first two episodes last night and he wants to know why we don't have live in staff and is demanding tea.  He seems to be identifying with the Crawleys and I don't want to have to deal with the fallout when it dawns on him that we're the support staff, and it's too late to woo the lovely Lady Sybil.

Thursday, February 7, 2013

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.

Saturday, February 2, 2013

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.  

Friday, February 1, 2013

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.