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.