TUESDAY, MARCH 29, 2016

I knew it was coming, so I steeled myself for it.  “Name?”  check.  “Date of birth?”  check.  “Street address?”  check.  “Insurance?”  check.  ….wait for it….  “And it says here that you’re unemployed?”  

Through seething teeth, I think to myself, let’s define unemployed.  Scrolling back quickly in my mind, my first thought goes back to yesterday afternoon.  Mas gets off the bus.  Comes in the house.  I remove his backpack.  Unzip and remove his coat.  Unclip and remove his speech device.  Clean and plug in his speech device.  Remove any “empty” pictures from the device and make sure it’s functioning correctly.  Untie and take off his shoes.  Give him his Miralax dose and after school snack.  Take him to the bathroom.  Unsnap and unzip his pants.  Let him sit the required 10 (Peds GI-instructed) minutes.  Wipe his rear.  Pull up his pants and zip and snap them.  See that he’s smeared stool on the back of his shirt.  Have him sit back down and change his shirt.  Go throw the shirt in the laundry.  Then the fun began.  Unknown screaming session.  For the next few hours.  We blame constipation.  But who really knows?  Ran around the house opening and slamming doors, throwing toys, throwing food.  We take him to the bathroom repeatedly.  He watches requested shows on tv.  Any commercial with applause?  Starts another screaming fit.  But applause sounds elicit the added benefit of covering the ears, throwing himself on the floor, kicking his feet.  Any commercial with babies? Same thing.  He watches YouTube.  Same thing there.  We pray for no babies and no applause.  (Why can’t YouTube have a filter for such things?!)

It’s beautiful outside so we decide to run to town to get a steak to grill.  Should be great, right?  But any car ride for Mas now means he gets a cheeseburger.  So, a cheeseburger it is.  We drive through, because sitting inside means:  might run into a baby or small child who makesbaby noises.  And if we’re in an enclosed space when the baby shows up, we have the added pleasure of getting scratched and/or grabbed.  Go park and watch trucks, which is his favorite thing.  I walk to the store to grab groceries.  Howard feeds him and they talk about trucks.  I walk back to where the truck is parked, lugging groceries.  On the ride home, Howard wants to play me a song.  Great tune, but it has applause at the end of it.  Mas responds accordingly.  

When we get home, Mas throws his usual screaming fit that signifies the end of a trip.  Covers his ears, runs in the house, down the hall, screaming.  Take him to the bathroom, same drill as before.  Untie and remove his shoes.  Unsnap and unzip his pants.  10 minutes of peace.  Throw in laundry, fold and put away one load.  Back to bathroom. Wipe.  Pull up the pants.  Snap and zip.   Time for his supper.  Get out his meds.  Feed him a limited supper because he already had a burger.  His show has ended and regular tv has turned back on.  A baby comes on the screen.  No sound, just the picture of a baby.  Instant screaming festival.  Runs down the hall, hands over his ears, screaming bloody murder, slams his door, picture falls down, kicking the floor.  We work on getting our food ready.  

We finally get ready to go sit outside.  It’s 56 and no wind-a gorgeous day by any standards.  Put my feet up.  Mas comes out.  We talk to him about looking for airplanes.  Dog makes a yawning noise.  Mas runs in the house, screaming, hands over his ears…same drill.  Comes back out about ten minutes later.  We talk to him about looking for the moon.  Someone walks by the driveway and the dogs start barking.  Masresumes his screaming episode.  We look at the time and decide a 10 minute early bath is totally alright tonight.

I go inside; he picks up his toys.  I bleach clean his ipad, the counter, his chair.  We go into the bathroom.  I brush his teeth, floss his teeth, start the bath water.  He removes his shirt, I remove his pants, his socks.  He goes to the bathroom.  I turn on the lights for his bath and the fan.  Wipe his rear.  He gets into the tub himself.  I wash his hair, clean his body, rinse his hair.  We make bubbles and talk about the bubbles.  I turn off the water, take his dirty clothes, head to the laundry room.

I change over the laundry, empty and load the dishwasher, update the shopping list, bleach clean the counters.  Howard feeds the dogs and gets the grill going and puts the potatoes on.  I put away clothes,Howard opens the shed door and looks wistfully at the boat for about ten minutes.  I go back to the bathroom, take Mas out of the tub, dry him off, set him on the toilet.  I put his deodorant on, spray some body spray on, and make note that it’s almost time for us to shave him and cut his nails.  I put his pajamas on and take him to his room and turn on his fan, give him his crib toy, shut the door, and go back to the kitchen.  I set out the morning items….cereal, bowl, cup, Miralax, spoon, meds, pudding, applesauce.  

I go back outside and Howard and I sit and enjoy the last bit of evening light while the chicken finishes cooking on the big green egg.  Bliss.  Mason comes out of his room continuously.  We keep telling him to go to bed.  At about 7:45, Howard and I sit in the kitchen and eat supper.  While stopping continuously to tell Mas to go back to bed.  At 8 pm, we clean the supper dishes away, unload and load the dishwasher back up, and get settled in to watch some Netflix.

Our Netflix show has some applause in it.  We hear pounding and screaming from Mason’s room.  He comes out in the hallway, screaming and covering his ears.  I chastise myself for not catching it and muting the sound.  He goes back into his room.  Next, our show has people screaming.  Mas comes out and repeats his display.  This continues until 10:30 pm.  Howard takes Mas to the bathroom for the ‘last’ time of the night.  He gives him his “sleep aid” (insert joke here).  We finally get to bed, lights off, at 11 pm.  Fall asleep around 11:30.  

1 am, our bedroom door flings open, Mas is standing there, screaming.  I look at clock, force myself out of bed, take him to the bathroom.  Wipe.  Put his diaper on.  Put his pants back on.  Take him back to bedroom.  Turn his moon on.  Check his crib toy batteries.  Tuck him in.  Close his door.  Say a small prayer.  Crawl into bed.

2 am.  Screaming like he’s being poked with hot pokers.  I go to his room, expecting to see wild animals in there.  Just him; fan off, toys pulled out, blankets on floor.  I take him to the bathroom.  Wipe.  Put his diaper on.  Put his pants back on.  He clicks on the roof his mouth-his sign for thirsty.  I give him a drink.  Put my hand on his forehead for the obligatory ‘do you have a fever’ mom check.  Nothing.  Take him back to bedroom.  Make his bed.  Put the toys away.  Turn the fan back on.  Turn his moon on.  Check his crib toy batteries.  Tuck him in.  Close his door.  Say a small prayer.  Crawl into bed.

3 am.  Opens our door.  Turns off our fan.  Grunts.  Grunts.  Grunts.  Slams our door.  Slams his door.  Opens our door.  Clicks our light switch repeatedly.  Grunts.  Grunts.  Grunts.  Slams our door.  Slams his door.  I go to his room, look around, all seems to be well.  Decide I should probably take him to bathroom.  Go to pull his pants down, and they’re soaked with urine.  Go to take his shirt off, also soaked with urine-up to his chest.  Turn the light on, take off his clothes, wipe him clean, wrap the diaper in a bag, throw it out.  Go to throw the clothes into the washing machine.  But the machine is full.  Because our machine is always full.  (I’ve folded more 3 am loads of laundry than I care to remember.)  Move clothes over, start dryer.  Go to his room, remove urine-soaked sheets.  Hope and pray his urine pad was in the right place and saved one of his two waterproof mattress pads….yes, luck is with me tonight.  Only have to wash his sheets and one urine pad and his pajamas tonight.  And one blanket.  Not bad.  Top blanket is okay.  Remake bed.  New urine pad, new sheet set, new blanket, old blanket from floor, pillow and crib toy back in place.  Put all urine-soaked items in the washing machine and start it, shutting the laundry room door so the noise doesn’t wake him up.  Go back to bathroom, dress him, take him to bedroom, tuck him in, check crib toy for battery life, turn on moon, turn on fan.  Close door.  Say big prayer.  Fall into bed.  One of our labs grunts disapprovingly.

5:30.  Alarm goes off.  Throw clothes on.  Let dogs out.  Feed dogs.  Mix up Miralax.  Pour cereal.  Start coffee.  Wake up Mas.  Take him to bathroom.  Undress him.  Put on deodorant and body spray.  Dress him for day.  Go to kitchen.  Feed him and give him meds for day.  Back to bathroom.  Brush his teeth and comb his hair.  Set him back on the toilet.  Pray he doesn’t get stool on the back of his shirt, which is the usual morning routine.  Check for a spare shirt for when that happens.  Close door so he can sit.  Get his backpack, shoes.  Check weather for coat options.  Get coat.  Get him off toilet.  Note shirt has stool on the back of it.  Change shirt while trying not to get it in his hair.  Wipe.  Pull up jeans, snap, zip.  Have him sit on couch to put his shoes on.  Put speech device around waist.  Put his coat on.  Zip it.  Put backpack on him.  Clip it.  Open front door and wait for bus.  When it arrives, follow him on bus and put his seat belt on.

Bus pulls away, and I get to have breakfast.  Now, I get to buy groceries, ours and his, do dog chores, (grooming, baths, etc.) clean, do outdoor chores, mow and/or push snow, do landscaping, check his supplies and replenish diapers/wipes/toothpaste/medications (OTC & prescription)/clothing/anything else he needs to survive.  

On a good day, if I plan everything just right and am on my game, I can usually squeeze out some time for myself, where I can quilt or take pictures.  (But lately, I usually try to catch at least a 20 minute nap…because even though our neurologist told us, “a lot of kids like this just don’t need much sleep”…guess what, we do.)  While on call for him, of course.  Because you never know when you’ll be called and told:  “He has yellow snot coming out of his tear ducts.  He is walking bent over.  His hands are purple.  His feet are purple.  His cheeks are purple.  His ears are bright red and warm.  He won’t eat his lunch.  He won’t drink anything.  He’s screaming and he won’t stop.  He’s very still.  We can’t get him to calm down.  He has diarrhea.  He keeps having bowel movements.  He hasn’t had a bowel movement all day.  He’s just not acting like himself.  He is spitting a lot.  He is drooling a lot.  His nose won’t stop running.  He’s a snot machine.  All we’ve done today is wipe his nose.  It seems like he just wants to go home.  He keeps pushing mom on his speech device.  He keeps pushing home on his speech device.  He keeps pushing I want to go home on his speech device.”  All of which are real things I’ve been called for over the years.  And that’s truly only about 10% of the calls I’ve gotten.  So I’m always on call, day and night.  For no pay.  No benefits.  No appreciation. 

But let’s look at your job.  What, 38.5 hours a week?  Because we all know the 40 hour work week is long gone.  Between waiting in line at Starbucks before work, lunch taking longer than it should, office birthday parties, leaving early for “special” events, and the all-encompassing “traffic” excuse, 38.5 might even be pushing it.  You.  Mid 20s.  Brunette.  Haughty.  Nose lifted a little higher than the top of your computer screen.  You come to work in your matching clothes, heels, hair done, jewelry.  You come to work, check people in, sit in your chair.  Your fingers touch the keyboard.  About 10 am you stand up to use the bathroom and “stretch your legs a bit.”  At 11:55 you head out for lunch.  Your chosen lunch spot is busy, so you call your office crony to let them know you’ll be a bit late.  You saunter in at 1:08.  Sit back down.  More typing.  Maybe some filing.  Some phone work.  At 2 pm you eat a power bar and drink a Sobe.  At 4 pm, you’re like a horse pointed for home.  Start joking with people as they come in, start emptying your coffee mug, straightening up the desk, headed for the homestretch.  By 4:30, you’re eyeing the clock like it’s mocking you…counting down the mintues.  At 4:50, you’re pulling up your nylons and adjusting your shoes, closing out of your computer.  At 4:55, you stand up and tell your co-worker that you’re headed out, to avoid the crowd leaving the hospital parking lot.  You head home, to your 20-something-year-old-life, which probably consists of a lot of selfish and age-appropriate daily decisions.  You either party or sit on a device all night, maybe even head to the gym and chew gum while looking bored on a treadmill, sleep all night, and wake up so you can go to work and ask some tired looking 46 year old if she’s unemployed the next day.  

So.  It says here you’re unemployed.  Sure.  Let’s go with that.