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.



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).

Click HERE to join the blog hop!

20 Comments on “World Down Syndrome Day Countdown: A Day in the Life”

  1. Oh my gosh! I LOVE that picture. LP really looks like he has a secret that the rest of them don’t know!

  2. lclilienthal says:

    I love this so much, especially the part about you feeling like a parade float. I know it is totally annoying for me to say this, but honestly, those days (as I can recall them through my rose colored specs) were idyllic compared to the teen years. Soak it up!!

    • jisun says:

      No not annoying at all, because even when I’m feeling tired and frustrated, I do know that this is a really sweet time for all of us and I feel pretty darn bittersweet about them growing up. But then I see how children blossom into adults, and I imagine that the pride you feel then is a whole ‘nother thing. The yelling and the moods, though, I’d be fine to skip. ;)

  3. downssideup says:

    Oh my word, this brought back more memories than you can imagine! I will join your bloghop. I’ve started a WDSD link too back at downs Side Up. So grateful for the support network we are part of. H x

    • jisun says:

      So glad you are joining! Will head over to yours as well. Absolutely agree, this wide web of families across the globe is something I had no idea about when we got our diagnosis. It’s a beautiful thing.

  4. Stephanie says:

    The visual thought of you as a parade float made me cackle loudly enough for Owen to come over and physically close my mouth. And seriously what is it with missing toilet paper?? I’m going to start a campaign to get toilet paper rolls to fill themselves, dammit!

    • jisun says:

      Haha! Oh, Owen. No shortage of opinions on that boy, I love him. Oh my gosh, imagine a toilet paper roll that never ran out. Like the everlastinggobstopper for mommies. Swoon.

  5. 8hands2hold says:

    I love it! Sounds close to my day I send my 4 bigs off to school and then must spend the rest of my day entertaining a very nosey toddler. How did I ever parent my oldest? I don’t remember. Thanks for the glimpse!

  6. Me too thanks! For the laughs…omg I’M STILL smiling!

    • jisun says:

      I’m glad, laughing is so good for us! I keep trying to explain to people that our lives are really not what you’d think if you googled “special needs parent” because every family is pretty unique!

  7. Diane says:

    He only screams 493 times? Lucky! I get at least 721 of them. Bahahaha…what’s up with all the screaming anyway?! Your day is waaaaay more eventful than mine. We need to come hang out at your house! ;)

    • jisun says:

      Oh man are you getting a ton of that too?! It must be the age. It is driving me to drink in the morning though. I gave you ham on your plate instead of potatoes? Scream. I want you to lie down for a diaper change? Scream. You’re excited about that toy car? Scream. Gah!

      We can put them in a little sound-proof room and they can scream together. ;)

  8. Lori says:

    My almost-two-year-old Katie screams like Roger Daltrey. (However, it’s getting better.) I want to smoosh LP–too cute! Happy World Down Syndrome Day eve!

  9. leticia says:

    Sounds like a lovely life Jisun! I get the “must wave at everyone we pass” thing too. Getting from the car to the supermarket can take 10 minutes some days!

  10. SO Great! As usual. Smooches, – Ms

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