NDSS Buddy Walk on Washington: We Made It!

A while back, the National Down Syndrome Society (NDSS) contacted me and offered me a scholarship to attend their legislative advocacy conference.  Never one to scoff at a chance to take a free trip do good, I immediately said yes.  Actually, the offer resulted in a bit of hand wringing on my part, because try as I might, I couldn’t figure out why they’d asked me.  It seems like there are so many other amazing advocates out there, I felt a bit like a fraud.  All I do is write on this blog, after all.  As much as I eschew the idea that people have to have “expertise” to be advocates, I have a hard time applying that philosophy to myself.  But that’s for another post.

Neither of us were very pleased to be on the subway at 6:00am.

Neither of us were very pleased to be on the subway at 6:00am.

I woke up at an ungodly hour this morning, scooped up LP while still in his pajamas, and left sunny California for Washington D.C.  A few items and musings of note from our travel day…

  1. When you travel alone with a baby, people assume that you are a first time parent.  I’m very pleased to tell you that I now know to start rice cereal for babies who don’t sleep, and that I shouldn’t be afraid to put LP in daycare.  I will also be sure to cherish every moment I have with him before I start having more kids.  Wink, wink.
  2. I have now taken a shower, two days in a row.  And no one was opening the curtain to tell me about a fight, nor was there a baby screaming over the monitor.  *cue Handel’s Messiah*  On a related note, is it possible for your ears to go through noise withdrawal?  Since being away from Mouse and Chipmunk for the whole day, I swear my ears are hearing phantom sister fights and breaking noises.  It is like my ear drums are stressed out from sudden disuse.
  3. During dinner tonight in the hotel restaurant, our server was particularly enamored with LP.  Not in the fake, I’m-pretending-too-hard kind of way, mind you.  She really liked him.  I saw her peeking at him from the kitchen and telling her fellow server how much she liked him.  And if that didn’t tickle my heart enough… She asked me how old he was and if he is walking yet, but before I could feel defensive, she told me about her nephew who walked at 2.5 years and talked at 3 years old.  She didn’t say it in a way that was sad or awkward, just sharing.  We chuckled and both agreed that some people get too caught up in the numbers game.  And I loved that.
  4. I’ve been thinking about online relationships today.  I have a number of mama friends I’m going to meet for the first time in person at this conference.  I am beyond excited, as these moms have been there for me, shaped me, and humbled me over the past year in very profound ways.  Plus, I really like them, they are nifty people.  I’ve been wondering—how much can one know someone from a purely online relationship?  I’ve got several, and I sure as heck feel like I know them pretty well.  How will things change after meeting in person?  Will they change at all?  Perhaps the topic of a future post…
  5. Lastly, hotel beds.  They rock.  There are no Lego pieces tangled up in the sheets.  Your pillows haven’t been stolen to make a fort.  There are no piles of stuffed animals that are supposed to be zoo residents (your bed is the zoo pen, duh).  Best of all, it is mine.  All.  Mine.  Bwahahaha!
My little hotel "helper", hard at work.

My little hotel “helper”, hard at work.

Not all that pleased at dinner.  Mommy, on the other hand, was very pleased with her champagne.

Not all that pleased at dinner. Mommy, however, was very pleased with her champagne.


Learning a new sign: Please.  As in, "Please let me throw the remote control off the bed approximately 245,657 times in a row."

Learning a new sign: Please. As in, “Please let me throw the remote control off the bed approximately 245,657 times in a row.”

So that’s what we did today.  We have officially begun LP’s first trip to Capitol Hill.  Hopefully the first of many times he will put on his advocacy shoes.  Or booties.  Or socks, because I forgot his booties.  Bad mommy.

Every Day: Shifting the Narrative

Down Syndrome Uprising (DSU) is hosting a blog hop about every day advocacy.  The question DSU poses is: What does your every day advocacy look like? For me, it is about shifting the narrative. Every day, every single one of us participates in a collective narrative. Every word we choose becomes part of this narrative. The idea of being an advocate doesn’t come naturally to me; LP had to shove me into that role. Nonetheless, now that I’m here, I’m having a hard time shutting up.

I have three stories… Read the rest of this entry »

Right Versus Easy: #JusticeForEthan

I know I have written about Robert Ethan Saylor’s homicide many, many times.  I’ve written about Ds awareness.  I’ve written about training.  I’ve written about action.  Feels like I’ve hashed and rehashed my feelings on what happened.  Yet.  Somethin’ is a botherin’ me.

Read the rest of this entry »