World Down Syndrome Day Countdown: A Day in the Life

March 21st is World Down Syndrome Day.  My kid who has Down syndrome is 16 months old.

Our day starts off something like this:

Not a bad way to wake up in the morning, eh?

Not a bad way to wake up in the morning, eh?

LP sits up in bed.  I let him into our bed around 4:30 or 5 each morning, hoping that I’ll get more sleep.  “Sleep” in this particular instance is defined as nursing while kicking me and then rolling over all over the bed using me and his dad as human pillows for a couple of hours.  His two morning activities are usually a) picking my nose and b) pulling open my shirt to ask for more milk.

Somewhere in there, he usually does his funny grunting noise which signals that he needs to poop.  I put him on the potty while he stares at his junk as if it the best thing EVER.

Downstairs I make breakfast while Mouse and Chipmunk resume some kind of mind-achingly complicated make-believe game.  LP usually makes a beeline to the dog and methodically tortures plays with him.  I always find this hilarious, because our dog could just sit on LP and crush him, yet he actually seems to like it.  I think those two are going to be best buds.

Peekaboo!

Peekaboo!

Yesterday, we dropped Mouse at art class, and Chipmunk, LP, Cisco (the dog) and I went for a walk.  LP rides in a woven wrap on my back and usually narrates the walk.  Lots of looking for Daddy and playing peekaboo with me from behind.  Eats my hair.  Cleans the wax out of my ears.  Lately he’s been waving at strangers while he rides on my back, which makes me feel like a parade float.

After Mouse’s art class ended we met a friend for a play date.  Some sand was eaten.  Some swinging occurred.  Somewhere in there, I fed the kids lunch.

Home.  General mayhem while I make dinner.  Daddy comes home, more mayhem.

Bedtime.  Blessedly quiet bedtime.

Now I must also mention that the following things also occur nearly every day:

  • LP yells approximately 493 times in frustration, joy, boredom, or happiness.  Or, just to let me know that he can.
  • The girls play “You’re the Worst” game at a minimum of ten times throughout the day.  This game entails yelling “You’re the worst” back and forth, over and over again, until one sister screams in frustration and stomps off.  Mommy usually wishes she could temporarily cut out her eardrums during this game.
  • LP looks down my shirt, then nose dives towards my boob.  This happens anywhere from three to twenty times during the day.
  • When I go to the bathroom, something bad happens.  The other day, I did this and Mouse started screaming.  I ran out to the (gated) driveway where they were playing, and a little stray Maltese dog was rolling all over LP’s lap, scaring the bejeezus out of him.  The girls pretty much thought this poor furball (who was actually a very sweet dog) was eating their brother, and much crying ensued.   Today, while I was in the bathroom, Chipmunk peed her pants at the dining room table.  Why?  Because she couldn’t get down and wanted help, but then didn’t want help from Mouse.  So it was the obvious that she should not just get down from her chair like she does EVERY DAMN DAY, but rather pee on it.  I think this is why older women have incontinence, not childbirth or old age.  We hold our pee because bad stuff happens when we are gone.
  • Someone goes to the bathroom and there is no toilet paper.
  • Someone does something inappropriate and gets hurt.
  • Someone refuses to eat enough and then later demands unreasonable amounts of snack (request summarily denied in most cases).
  • Someone has fun.
  • Someone learns something new.
  • Someone cries.
They love him more than me.  Wah.

They love him more than me. Wah.

So, that’s a day in our life.  Eat, play, sleep.  Beautiful moments, all the way (even the ones that don’t seem so beautiful at the time).

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From The Daddy Desk: Happy First Birthday, Son

First BirthdayDear LP,

Daddy here.

Can you believe you turned one this weekend??? We celebrated the Kimchi Latkes way: by making you wear a funny Korean hat, stuffing ourselves with delicious food, and surrounding ourselves with loved ones.

We also, of course, reflected on your first year of life. Read the rest of this entry »


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Dear Mouse,

You went to a birthday party today and your father’s report was… well, not great.  It seems you spent most of the time being a barnacle on your daddy’s leg, despite the kind efforts of other kids to get you to play.  In fact, your daddy told me you were pretty unkind to one of the kids, and that hurt my heart a bit. Read the rest of this entry »