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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Monday Musings: Standing In The Gap

No, not the giant clothing label.  I mean, the gap, that place in between where I seem to constantly find myself.

Recently I was in a conversation about bridging divides, and someone told me that my purpose in life might be to stand in the gap.  I find myself often feeling so sympathetic to two seemingly opposite points of view, and I wonder, am I being inclusive or being too relativist?  I’ve chewed that over for a few days.

Here's my feet.  Standing.  Between two lines.

Here’s my feet. Standing. Between two lines.

I do feel like I’m forever in a gap.  I’ve felt this way ever since I can remember.  Growing up as an immigrant, I never felt at home like others seemed to feel.  I was eternally confused in my friends’ houses.  Why are there so many darn table utensils?  Why are their beds so complicated and ruffly?  Why do they all wear their shoes on the carpet?  Why is breakfast always sweet bready stuff?  I can’t say that being in Korea felt like home either, though.  My Korean is about as good as a first or second grader’s (and maybe that is a stretch).  I have a distinct memory of my cousin teasing me about how dark my skin was (from so many hours of running around in the California sun).  Most of all, I couldn’t quite feel comfortable in a place that was so… homogeneous.  The San Francisco Bay Area is so diverse, I’d gotten used to seeing every color under the rainbow, every style, every language, all on the streets together.  As a result of all this, I never felt like I totally “got” my family, but never felt like my friends “got” me either.

After my sister died, I felt caught between childhood and adulthood.  At eleven years old, I’d found my baby sister cold dead in her crib.  Hours after the ambulance had taken her away, someone took me to the hospital.  I don’t remember walking into the building, or who even brought me.  I will forever remember walking up to my mom, holding my sister’s body.  My mother said, “She just looks asleep.”  Aside from the marks left on her face from the intubation, she did look asleep, and I immediately understood why my mother couldn’t give her body up.  It seemed unfathomable that the spark of life could leave a body like that, forever.  I grew up a lot that year.  That kind of finality, and the resulting wild grief that my parents endured was a lot for an eleven year old.  I felt half like the young child that I was, and half like I’d already lived too much.

I’ve grown up between privilege as well.  After some pretty working class beginnings, by elementary school I was attending an overwhelmingly white school district that was very wealthy.  We, however, were neither white nor wealthy.  I very much felt my model minority status.  I can’t tell you how many times teachers made comments about “my background” being the reason I did well in school.  I assure you, those teachers did not mean my mom and dad’s parenting skills.

Yet, I didn’t feel like I necessarily came from the “wrong side of the tracks” either.  This has persisted as I’ve become an adult; I see a lot of wealth and privilege around me, and honestly, I’m never sure if I’m part of it or not.  We live in East Oakland, on the edge of what seems like one of the last working class neighborhoods in the entire Bay Area.  I can’t deny that there is gang activity and lots of poverty very close to our house.   I’m not white, but most of my friends are.  We are not experiencing poverty by any means, but we struggle some months.  Heck, my husband is a lawyer, and I’m a stay-at-home-mom.  We have the choice to eat organic food most of the time.  That feels like privilege.  Yet, I feel outside of the groups that are considered the most privileged in this country.  I’m a brown-skinned immigrant, after all, and I’ve felt the real negative consequences of being made into the Other.

Then… God.  After I left Catholicism, I drifted.  For a while I thought I was agnostic, but over the years, I haven’t been able to truthfully deny that I do believe.  Just like I hear atheist friends say that in their core, they know there’s nothing out there, I feel in my core that there is something out there.  No, not men with beards in fluffy clouds.  Or even one single divine omniscient being.  All I know is that there’s something there.  Organized religion, however, all falls apart for me.  I just can’t do the dogma, the structure, the rules.  Yet, I find myself defending religion all the time.  When I listen to people speak about faith and God, it does speak to me.  The language might differ, but important messages all sound the same to me whether they come from a place of belief or not.

More recently, I’ve found myself in a gap of Disability Land.  I have a hard time even navigating the language I use on a daily basis.  I’m a parent of a disabled child.  I’m a parent of a child with a disability.  I’m a parent.  My child has 47 chromosomes.  He’s my son.  I’m his parent.  Words matter, and I struggle in this Disability Land gap.  I’ll forever be connected to his disability but will never experience it myself.  I am constantly walking the tightrope of my own feelings and respecting his future.

Sometimes, I find standing in the gap lonely.  Other people look so confident and secure in their willingness to pick sides, speak so unequivocally, and I wonder if there is something wrong with me that I seem unable to do the same.  Other times it is freeing.  I get to swim in my current and not anyone else’s.  Finally, in my thirties, I’ve discovered that even though it takes more energy for me to be this way, it is better for my heart and soul to do my own thing.  

All my life, I’ve had people try to push me one way or another, to pick a camp between Right and Wrong, Should and Shouldn’t, Good and Bad.  I worry that others think I’ve got no moral compass, but the fact is that I find it more fruitful to study that gap, stand in the gap, explore why the gap exists, than to pick a side and try to pull anyone else over.  Maybe that friend was right.  I guess this is where I’m meant to be.  Maybe if I stand here long enough, the gap won’t seem like such a gap, just another place to be.  Then, we can all stand together.  


I Support Unicorn Farts

There’s this thing.  It happens in the Down syndrome community.  (I think it happens in other places too, but I can only speak to what I know.)

unicorn

By KarenSLewis (Own work) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)

I call it the unicorn fart phenomenon. Read the rest of this entry »


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