Friday, June 15, 2012

on chaos and the wisdom of turtles

Today has not been a good day as a special needs mom.  Hunter has been dealing with some health issues lately.  I'm not sure of the cause (though I suspect food/environmental allergies) but I can't help but see the toll it's taking on his personality.  Something I can't identify has been stealing away his energy, his spark, his sass.  There's been a lot of staring into space lately, a lot of repetitive banging of the same two toys together, a lot of sitting, mouth open, in the middle of a group of kids, too overwhelmed by their activity to take part.  In other words, a lot of everything-I-am-most-afraid-of-about-Down-syndrome.  I don't know what's going on but it's kinda scary to see my little boy's personality slipping away.  

The whole thing is probably made worse by the endless stress in our lives.  The nanny job I hoped I had lined up in Wisconsin just fell through, leaving me with dozens of applications, a handful of interviews, and nothing definite.  On top of that I have to find housing, figure out whether our ancient van will survive the journey,and all the other details involved in moving across the country.  Oh did I mention continuing to work extra hours on top of it all? and handle every other details of life?

I'm exhausted. Scared. Terrified this is the wrong decision.  Terrified of making another the wrong decision on top of the wrong decisions I've already made.  I'm not sure if I can make a right decision anymore.  Add to that the crushing questions of how am I going to go to work, have a full time job, pay my bills, go to school, get good grades, graduate, work another job - all while taking care of a special needs child all by myself.  How am I going to give Hunter the care he deserves? the life he deserves - all by myself.  It's a boulder pressing on my chest, pulling out my back, crushing my shoulders down.  

Anyway, today I had to return some (unwatched) movies to the library.  After missing an appointment at the pediatrician's, I loaded a hot and cranky little boy back into the un-air-conditioned van and headed downtown, planning to drop the movies in the drive-thru box and return home at once, spending as little time as possible in the 95 degree heat.  But when the van bumped over the parking lot entrance, I looked at the squat brick building and thought about cool air conditioning.  (Yes, it is THAT hot that instead of planning my errands around efficiency I plan them around air conditioning.)  I swung into park and headed in, the heavy bookbag thudding into my knees, my shoulders tight with frustration and anxiety.  My fingernail picked at the label of the DVDs as I stood in line to return them.  

Then, as the air conditioning washed over us, I hesitated, then half-without thought stepped out of line and wandered into the non-fiction sention of the library.  Hunter wiggled and squirmed to get down so I plunked us both down on the carpet.  He promptly threw up.  I wiped it up and laughed a little as he grabbed at the rag.  The tension between my shoulders eased as he turned his attention to a large book on the shelf, and I realized it was the Encylopedia of the Horse, an enourmous weighty jewel of book filled with facts and photos.   It was my favorite book as a child.  I helped Hunter haul it off the shelf and turned the glossy pages for him to see, a bit nostalgic as memories of previous readings returned.  

After a bit we selected a few items and headed back to the checkout - but once again I stopped.  The door to the children's room was open, and I caught a glimpse of the big aquariums in the connection hall.

Once more on impulse I headed in.  I shrugged my bags to the floor and stacked the books nearby, then stood Hunter up against the glass.  A school of minnows glittered over.  Hunter cooed in startled delight.  He flattened his hands against the glass, making sweat-sticky palmprints.

Then slowly, from behind a rock, three turtles swam over.  They hovered, barely moving, their noses bumping the glass.  Babbling, Hunter leaned forward till his sweaty nose bumped the glass too.

The angry simmer of anxienty in the back of my head hushed as I watched the turtles swim slowly to the surface, breathe deeply, then dive low again to watch my son through their never-blinking eyes.  Hunter smashed his face up against the aquarium, pausing only long enough to look at me and exchange a quick this is so cool! grin.

Perfect stimulation, my therapy brain thought.  "Turtle, one, two, three turtles" I said, reinforcing the information.

And as Hunter ignored me and chattered to the turtles, I closed my eyes, pressed my face into his fuzzy head, and dared to think The Thought.  

What would my life be like without Down syndrome?

What if I had a typical child, with designer JEANS not GENES?  What if thoughts of therapy and stimulation weren't flitting through my head, and instead we'd be just a mom and a kid watching some turtles?

Then it hit me.  If Hunter didn't have those special genes, we wouldn't be watching turtles.  We'd be in that hot sticky car.  I wouldn't be sharing a moment of wonder with my child - I'd be changing lanes, my mind tangled with the long to-do list to be completed at home.

And that's when finally peace entered my heart.  Yes, it's been a hard week.  Yes, being a special needs parent sucks much of the time.

But not all of the time.  Hunter's challenges add a new dimension to life, a slower, more peaceful dimension, where I spontaneously squat on library carpets and read my favorite books to my kid, where we pause to take stock of our blessings.  Where, like turtles, we move slowly, breathe deeply, and take in the world through unblinking eyes of wonder.

So guess what?  The rest of this week, I'm going to try to slow down just a bit more.  To appreciate how awesome my kid is RIGHT NOW, not how awesome he was a month ago.  When I hit post on this, I'll go wake him up just for kisses and hugs.  

And then, we'll probably head to the beach.  There's only so many more sunsets left.

Monday, June 4, 2012

Upside Down World

Wow.  It's been six months since my last post.  Feels like a lifetime or two ago.  

On February 2, 2012, I became a single mom.  I don't really want to go into details now.  I may or may not at some future point.  But suffice it to say what happened was beyond my control.  In a way beyond his control too.  Being a single mom is not a choice I made, but a path I was forced to take.  I'd like to say I made a quiet, firm stand and chose a better life for myself and my son, but in reality, a bomb hit my world and I'm still digging my way out of the dust and rubble.  I'm trying to find the surface and the sun again.  Sometimes I get little glimmers through the dark, but as yet, I haven't found it.

After a lot of thought and prayer Hunter and I are headed back to Wisconsin at the beginning of July.  I'm really happy to be headed back to apple trees and autumn leaves and freshwater streams, to family and the smell of home.  I'm really scared too, as I'll be leaving my nanny job that I love and the life I've built here in Florida for new unknowns.

Goals, present and future?  Find another nanny job in Wisconsin, find affordable living and get settled with my munchkin.  After that, school, specifically nursing school.  

Everything in this new life is strange.  I feel like an avatar on Pandora.  New body, new world.  Nothing's the same.  The colors are different, sharp and stark.  The sounds are unfamiliar and startling.  

Only one thing's the same, and that's the mommylove I have for my little guy, my Mr. McScooty.  We had a newsflash of national importance last week, containing four crucial words:  WE HAVE FORWARD MOTION!  Somebody's mobile and crawling all over the place.  He isn't strong enough for hands and knees yet, so he scrabbles and kicks and flaps his arms forward, exactly like a baby sea turtle flopping across the sand toward the waves. When I come in the room, he clambers over to me and then throws himself across my feet, patting my legs like a puppy begging to be picked up.  It's heartmelting.

There's a lot more to say, but little time before midnight, and after three nights of Hunter wanting to wake up and play at 3AM, I need some pillow time.  I'll be back.  With any luck, sooner than six months later.  ;)

In the meantime, check out this cuteness.  Yes, I do have the most adorable baby in the world.