Wednesday, October 29, 2014

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.  

Friday, October 3, 2014

It's a Glamorous Life

File this under the cover of "families with special needs - they're just like everyone else!"

(Otherwise known as a cheater post)

This morning the odd little old lady with whom I'd had an appointment last night called and scolded me for forgetting it.  Then I learned my laid back boss is leaving and my work load will be doubling.  I got home an hour after I was supposed to tonight and my adorable father in law didn't say anything but he looked tired and quickly left.  The hamburger was still frozen so I popped in a pizza except The Girl doesn't like pizza any more (insert wildly inappropriate genetic joke about falling too far from the tree) and she asked for spaghetti via Proloquo instead.  I am powerless to resist when she uses Proloquo spontaneously.  Except we don't have spaghetti and given the choice between poop-brown Extra Fiber! Penne and nuclear-orange mac&cheese she picked the latter.  In my head I start calling it Italian night because nothing screams Venice like frozen pizza and boxed macaroni.  I find salad in the back of the fridge which is surprisingly not gross despite being from last weekend but I snacked on all the toppings last night so I just add dressing except there's no spout on the dressing and I drown the salad.  

Then the dog ate half the pizza.

Pity my children if you must, but let's agree the only genetic flaw in their lives may be their mother and her poor domestic skills.

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Thursday, October 2, 2014

This is how you do it.

I've told this story a couple times, on FB and in other people's comment sections, but to kick off 31 for 21 and Down syndrome Acceptance Month, I'll share here. 

I was seven months pregnant and a frequent flyer at the high risk perinatal center when they found something amiss.  I was immediately shuffled upstairs to talk to the pediatric cardiologist.  You have got to love to the efficiency - no appointment, no wait, just take this elevator, turn right, walk 50 feet.  Apparently pending open heart surgery merits special treatment.  

And/or they wanted to shove the hugely pregnant, snotty weeping mess into someone else's office.  

And/or they were trying to atone for the fact they missed the GIANT hole in my child's heart during the first three ultrasounds.  

But I digress.  

The cardiologist explained what an atrioventricular septal defect was and sketched out a picture for me.   He told me how they'd fix it.  I'd backed out of my scheduled amnio and my blood tests were clear so we still didn't know, but he explained this particular type of heart defect had an incredibly high correlation with Down syndrome.  "Don't worry.  Even if she does have it, they've completely revamped the way they teach these kids and she'll be more productive than half of society."  

He was relaxed and upbeat.  No tragedy here, folks, move along.  They were going to fix her heart and teach her well and everything was going to be ok.  [I don't think "productivity" should be the go-to standard now, but it was comforting at the time & I seized on it.]

At the next appointment with my regular OB, the nurse said they'd only had "this happen" once before…  and she grabbed one of those happy family Christmas cards that line all OBs' halls, testament to the fruits of their, um, labor (couldn't resist!).

It was shot of a brother and sister, snuggling.  The little boy had Ds.  
"Aren't they beautiful?"

There are some ghastly diagnosis stories out there - doctors presuming and even advocating for termination, or coldly pointing out all the phenotypes of Ds on a newborn to parents, as if they were mid-autopsy or just found something in a petri dish.  Most Ds organizations try to include doctor training in their mission but it's an uphill battle.  

I was spared most the grieving and dismay many parents experience with the Ds diagnosis.  We'd lost our first baby and contemplating losing another in heart surgery was so gut wrenching, perspective wasn't so much gifted us as forced down our throats.  But I haven't given enough credit to those first conversations ~ they were beautiful.  

Tuesday, September 30, 2014

Little Idea(s) about School

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, September 21, 2014

Membership Has Its Privileges

Yesterday I took The Girl 45 minutes into town to get her glasses repaired.  I was annoyed about 5 different things - not the least of which was that we bought her glasses, and the accompanying warranty, 45 minutes away.  The eye center is attached to the hospital… and right around a couple corners from the perinatal center, where we first discovered the extra bit of magic that was to enter our lives.  The Girl likes to run the empty halls on the weekend and invariably tries out this door.  I often think we should come back during the week and hang out.

Because, you know, advocacy.

Or maybe because I have a twisted sense of humor.
As we were leaving, a woman smiled at us and asked how old she was.  And while dealing with the gen pop is not one of my strong suits (talking! strangers!), something in her voice made me smile and slow.  
"She's six."
"My son is… my son was…"
She faltered. 

Her son was 50 but had passed.  She said he was a gift and touched everyone who met him.  

Which was why I was hugging this unnamed woman three seconds after we met, and crying, and kissing my girl, who was alarmed and urgently signing "home."  The long drive and missed appointments and everything else gnawing at me was forgotten.  

We joke about being members of this club, and there are hard things that come with it, but not much else will move me to hug complete strangers.  


Monday, September 8, 2014

Monday, Monday

We had a lovely low key weekend - Matt returned from a 5 day business trip (!), which we survived without any ER visits, all family meals involved fresh produce, which is my new minimalistic parenting goal, and I binge watched Orange is the New Black while folding 354 loads of laundry.  I am happy to have neither committed any felonies, nor to have grown up in foster care.  Perspective, yo.

Other things that are making me happy:

  • I ran 2.5 miles on Friday & another 2 this morning.
  • It finally cooled off, making my morning runs less sauna-like, and more crisp fall, damn-I'm-glad-to-be-alive-like. 
  • That self congratulatory feeling I get when I get my ass out of bed and go running before work. 
  • The Boy and his friend finally tired of Minecraft during Saturday's sleepover… and pulled out a chess set.
  • Bedtime stories and sibling pix.

Things I'm not loving, just to keep it real:

  • That I haven't had the cash to chip in (yet) to the 6 fundraisers for people I actually know & like.  Real people, real friends, not random faceless organizations.  
  • Nor have I bought that shower gift, my brother's birthday/graduation gift, or sent flowers to the 5 people to whom I should send flowers.  
  • That after Friday's whopping 2.5 miles I spent all weekend hobbling around, cursing my feet & middle age.
  • The aforementioned ass.  

Sunday, September 7, 2014

Conversations with my Children, Part III

The Girl, first thing in the morning, signing "cracker."
Me:  "No, sweetie, you can't have crackers for breakfast.  How about cereal?"
The girl grabbing her iPad, emphatically pounds, "[WOMAN!] I WANT CRACKERS!"
Just in case I'd misunderstood her.

The Girl, voluntarily (!) turning off Princess Sofia to switch to Proloquo:  "Snack, I want please."
Me:  "What kind of snack do you want?"
The girl:  "Yogurt, please."

The Girl, signing, "Goodnight, Mommy.  Bye-bye."
Me, surprised at the abbreviated process & picking her iPad to recharge it, "Goodnight, sweetheart."
The Girl starts crying, having realized there would be no midnight showing of Frozen:
"Noooooo!  More book, please?  Snuggle?  Lights out!"

 The Girl, upon hearing we were having (coffee) cake for breakfast, "Candles?"

The Girl, during a thunderstorm, signing:  "Outside? Bikes?"
Me:  "No, it's raining outside."
She grinned and returned a moment later with her rain boots on. 
"Outside? Bikes?"

This is a terrible picture, but she drew out the "Little monkeys jumping on the bed" song and was able to explain it to her para (who kindly provided captions).  

Back in May, at the end-of-kindy IEP, The Girl's school peeps formally announced the goal of communicating her wants and needs through multiple modes across a variety of settings 20x/day over 3 consecutive dates had been met eons ago and needed to be updated.  This may or may not have been followed by a wry look, a chuckle, an eye roll, and a comment about how very glad they are that she was at their school.  Oh, yes.  Yes, indeed.  That goal was a carry over from her preschool.  The school where her principal wondered if she had anything to say. 

Did I mention we were never, ever moving?  

Saturday, September 6, 2014

Reason Enough to Celebrate

It was Saturday, there was coffee cake, which The Girl did not distinguish from regular cake, and she asked for candles.  
I couldn't think of any reason not to. 
Happy Saturday! 

Friday, September 5, 2014

Tiny little bubbles

So I've been thinking about getting back to the roots of this ol' blog and posting a daily picture for the grandparents.
No promises (especially since I had to backdate this one).
I'm also guessing there will be an excessive number of end-of-day PJ shots.
Meh. I'm going to assume you believe they went to school in real clothes.
Outfits aside, damn, they are adorable or what?    
And, yes, they were blowing bubbles inside cause that's the way we roll.  

Thursday, September 4, 2014

Wednesday, September 3, 2014


Dear children, Sleep. Please
"One more chapter? More snuggles?"
Gets me every time.

Tuesday, September 2, 2014

My life, in 251 words

My mom sent A.A. Milne in honor of The Girl's 6th birthday and this little gem I found inside makes me laugh and laugh. Back to work today!

I think I am a muffin man. I haven't got a bell,
I haven't got the muffin things that muffin people sell. 
Perhaps I am a postman. No, I think I am a tram. 
I'm feeling rather funny and I don't know what I am--

Round about 
And round about
And round about I go--
All around the table,
The table in the nursery--
Round about 
And round about
And round about I go;

I think I am a Traveller escaping from a Bear;

I think I am an Elephant,
Behind another Elephant
Behind another elephant who isn't really there....

Round about 
And round about
And round about and round about 
And round about
And round about 
I go.

I think I am a Ticket Man who's selling tickets--- please,
I think I am a Doctor who is visiting a Sneeze;
Perhaps I'm just a Nanny who is walking with a pram
I'm feeling rather funny and I don't know what I am--

Round about 
And round about
And round about I go--
All around the table,
The table in the nursery--
Round about 
And round about
And round about I go:

I think I am a Puppy, so I'm hanging out my tongue;

I think I am a Camel who 
Is looking for a Camel who
Is looking for a Camel who is looking for its Young...

Round about 
And round about 
and round about and round about
And round about
And round about
I go.

Monday, September 1, 2014


Yesterday Matt & I spent several hours cleaning the house.  He spent most of that time getting the wine & coffee spots out of our bedroom carpet.  I even scrubbed the walls (dear God, I hope that brown stuff was coffee).

All the laundry was done & folded.  We had a lovely lunch and even cleaned the kitchen after.


By 8:30 this morning I had knocked the sugar bowl off the counter, sending shards of glass and ant crack across the kitchen floor, and the dog puked half digested grass up on the newly clean carpet.

It is slowly dawning on me that the problem around here may not be the underaged humans.

Sunday, August 31, 2014

On Clouds & Light

This summer was not great, for all the usual reasons (work & $$$), but it got to me more than normal and I have, frankly, not been in a Good Place.  
Actual storm over our house.  #JoysOfMidwestWeather

But my foot issue has faded to "manageable" and I've been getting out in the morning for some veerrryy slow, very short jogs. (I've been getting up early enough to run because I can't sleep worth a damn, but let's ignore that, for narrative purposes).  

It's also a three day weekend and while I still have to work, no one is expecting anything from me till Tuesday.  Yay? 

These creatures have gone back to school too, ending the financial hemorrhage that was Summer Care.
One was obviously more happy about it than the other, but she loves her para.

Yesterday morning I awoke to find the clouds had broken up.  Weird.  I don't know if it's the running or just my effed up brain chemistry righting itself.  But something to celebrate.  

And here I have been mocking the rainbows...

Saturday, August 30, 2014

And Then We Were Six.

So.  This happened. 

Six years ago, when I found I was having a little girl, I swore I wouldn't succumb to that pink, frilly, girly-girl nonsense.

Oh, plans.  
The gods laugh.

The Girl's aunt gifted her this little number with actual tulle, so help me, and... well...
then feminists the world over shuddered. 

Happy Birthday, sweet one. 

I will slay all the dragons for you.  

Tuesday, August 5, 2014

Sixes and Sevens

I had the lovely opportunity to meet one of my computer friends in real life on Friday.  There was an excessive amount of kid-chasing but at one point we were able to sit & chat as our extra-special kids played in the water.  And they didn't just splash - they rolled around and reveled in it.  Despite my failure to bring of change of clothes, I shrugged - carpe diem, said my friend.  Other kids, who'd only been dipping their toes in, followed suit - a fine example of peer modeling.  And at one point I elbowed my friend and nodded at the very pregnant woman nearby.  I don't remember what I said but we giggled a bit at what she could be thinking.  Was this to be an omen?  A harbinger of tears?  Or were our two laughing, splashing kids reassurance that it would all be ok, no matter what? 

What did the other pregnant woman think, later that day, as she navigated around my daughter wailing on the steps, despondent at having to leave? 

That night Matt and I went to a funeral parlor to say goodbye to a 6 week old baby I never had the chance to meet, a cousin of Matt's.  Theirs is not my story to tell but he had AML, a type of leukemia typically only found in children with Down syndrome.  Tests confirmed he didn't have it, but this tiny fact made me perversely feel like part of the story. 

My heart is broken for the family.  The empty nursery, the silent birthdays, the thousand shattering reminders to come must stretch in front of them like space itself.  And their loss has wrenched open an old wound of mine too, one that I thought had healed, so I stood in line to pay my respects with arms crossed and jaw clenched, trying to keep it together.  I'm sure I looked angry.  I think I was. In what twisted, dystopian world is this how it ends?

In order to distract myself I counted light fixtures and pregnant women.  There were a lot.  Of both.  And, god help me, but I could not help but wonder as I stood there how many of the pretty, weeping pregnant girls had taken that "new blood test" and how many of them weren't pregnant any longer because they had. I wondered - probably unfairly, because I'm sure all their friends are lovely people (though even fuzzy statistics back me up) - if they made a distinction between our cousin's loss and the end game of that test. 

An Australian couple recently used a surrogate in Thailand and conceived twins.  When it was revealed one had Down syndrome, they reportedly asked the surrogate to abort.  She refused.  After the babies were born, they took the "typical" one back to Australia and left the one with Ds behind.  There've been no reports that they formally put the baby up for adoption.  There was no medical fund.  They just left.  This story only has a not-horrifically-tragic end because the surrogate mom continued to care for him as her own, took him to a hospital, and the story got out.  A trust fund has been set up for the baby.  However the story could have easily ended with a too-tight blanket over the face or a dearth of bottles, and no one would have been the wiser.  No one would have cared.

The contrast between our cousin's standing room only funeral and the baby left behind left has gnawed at me all week.  It's not just the difference between 46 and 47 chromosomes, of course...  except it was.        
The Girl's birthday party was scheduled for Saturday but we pushed it because of the funeral mass. She just turned 6.  She'll get cake and balloons later, but in the meantime there was the annual, ceremonial reading of Dr. Seuss's Happy Birthday To You.
If we didn't have birthdays, you wouldn't be you.
If you'd never been born, well then what would you do?...
Or worse than all that... Why, you might be a WASN'T.
A Wasn't has no fun at all.  No, he doesn't.
A Wasn't just isn't.  He just isn't present.
But you...You ARE YOU!  And, now isn't that pleasant!
I tear up, every time.  Because, may God forgive me, but if I hadn't lost Brennan and if The Girl had been diagnosed sooner and if I hadn't felt her kicking, it might have been a possibility.  And I cannot fathom what grotesque fuckery would have made that OK in my head.  I cannot explain the apparent hypocrisy between then and my unforgiving judgment of worried future moms now, beyond the fact that I have now spent 6 years with this child and my world is brighter because of her.  I simply do not recall what my concerns were.  I wish I could convey to those moms how very fragile life is and how much joy can be sucked out of even an unconventional one.  How little those numbers matter.  How they should grab on to what they have because it might not last.  To carpe diem.  

Sunday, July 27, 2014

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.  

Thursday, July 24, 2014

Hippos, Lilies, & Corks, oh my!

I woke up early this morning to finish one of my NDSC conference posts, then made the critical error of checking Facebook. Facebook is where blogging goes to die.  

So although the NDSC post is languishing, I'll gift you with what otherwise would have gone on FB:

Did you ever have one of those mornings where you manage to bathe, feed & clothe both the kids AND yourself so efficiently you're actually going to be (*gasp!*) early... only to have one of your precious progeny knock a huge, whole watermelon off the counter and onto the floor where it cracks open & sprays EVERYWHERE?  No? Just me?  Ok, carry on then. 

In other news, The Girl's horse camp is a huge hit.  On her first ride they reported she was frantically signing "all done" but they told her they'd go around the ring three times.  By the third loop, she was signing "more" and gets a big grin on her face every time I ask about it. 

The hours are HORRIBLE - It ends at 3 and there's no after care, requiring intense schedule juggling and abuse of employers' flex time policies - But there's a fairy pond with massive lilies and Matt arrived the other day to find all the kids swimming in the horse trough. I love a place that encourages my kids to get dirty and, OH, is she ever dirty.  I nearly didn't take her into the store with me Monday, certain someone would accuse me of gross neglect.  

And just in case that wasn't enough, they sent home horsey crafts made of wine corks.  Wine corks!  These are obviously my people.
A portion of my kidney sale is funding a scrapbook with pictures of The Girl actually on the promised horses, to be posted soon.  To tide you over, however, she will demonstrate the process:
Yes, Sonic went to camp too.  The camp counselors were thrilled, I'm sure. 

Sunday, July 20, 2014

If it's Wednesday it must be the washer leaking.

I spent last weekend in Indianapolis at my third NDSC convention and I'm only now coming off a high that's probably illegal in most states.  I love-love-love going to these, despite being a grumpy introvert, despite the money (though I wrangled grants this year!), and despite the emotional landmines I occasionally hit.  This year was no different.  I want to run thru some of the sessions on here but thought I should play a little catch up first.  
We've had fun! exciting! events almost every weekend this summer - I went to Yosemite by way of a work trip, we attended Gigi's memorial in Nebraska and saw extended family (happily without the expected fireworks), the whole family played extras in a movie, we finally did the local Step Up for Down syndrome walk right (turns out mimosas are key), The Boy went on his first official Boy Scout camping trip and built a rocket, and we had some of my favorite weekend guests for July 4th (happily with fireworks!).
The Rocket
Each of these deserved its own post.  Sorry 'bout that.  It never happened because I've also been fighting the chronic, unwinnable battle of trying to get my **** done at work.  It's a 60+ hour/week job and I only have 40 hours to give it, which leaves me constantly frustrated.  And tired.  
The frustration's compounded by the fact that something expensive is breaking around here every.single.fucking.week.  The best (but sadly not the least expensive) incident was when The Girl, who has taken to acting out her favorite videos with her dolls and iPad (adorable!), took the iPad into the tub (That she'd filled herself! Such initiative!) to reenact a certain Sofia the First Mermaid episode.  Turns out drying electronics in rice doesn't work.  At all.  The monitor on my computer then died in solidarity.  There were various other trips to the vet, optometrist, and thousands of dollars spent on the cars, only to lose first gear on one.   

I still can't run on my effing feet, so I tried to tackle the garden to blow off some steam, but we live with heavy clay... and the $%^&* tiller stopped working. You gotta laugh, right? 
The Schedule
Piling on, child care this summer has been patched together with scotch tape and old chewing gum.  My father in law has been a tremendous help with the gaps but I feel like we've over-imposed and my calendar of who's where watching which child looks like a NASA flight plan.  The Boy at least got to go to some YMCA camps but The Girl... did not.  Which is a whole 'nother series of laments I'll spare you.  Out of desperation we just signed her up for two weeks of hippotherapy camp, which I've always wanted to get her into and am a bit giddy over, but I'm going to be a kidney shorter by the time it's over. 
Step Up for Down syndrome!
I think I'm most frustrated with myself - all of this is just so much first world, (sinking) middle class bullshit.  I mean, hell, we had an iPad and cars to break, right?  I have a job I mostly enjoy.  Why can't I keep hold of the joy and let rest roll off?  How did I let a needy corporate America worm its way into my head?  

Both my kids are healthy and thrilled to be spending so much time with their Papa*.  Matt's cousin's new baby was just diagnosed with leukemia and they've started a six month stay in hospital.  They would chew off their own legs to be worried about car transmissions and summer camps right now.  

I don't really have a solution - this is just me wondering what the **** is wrong with my head.  Look at these pictures - it's like a magazine spread of Must Do Summer Fun (most of these photos are also the ones that ended up on FB - should we talk about people putting up a pretty front?).  Arghhh.  I miss running. 
 *I should clarify Papa Fritz is pictured here because we saw him in NE, he stayed with us for a week, & helped The Boy build his rocket.  I am horrified to discover I have no pictures of the kids and Papa Jim.  Sorry Papa Jim!!!