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.