Wednesday, April 16, 2014

Favorite Beach Moments.

Ellie running into our room to wake up Matt with a loud, "I LOVE YOU DADDY!"

Seeing friends we met through this amazing Down syndrome online community.  Knowing that Ellie really can find community anywhere.  Knowing we are not at all alone in this journey, which can be a hard journey, but when you're at the beach, is just a hilarious one.

Miss Fiona is a doll.  Look at her.  She looks like a doll.  So sweet.

Realizing how much Ellie has grown up since August, when we were last at the beach.  She digs.  She builds castles.  (OK, so she finds abandoned sand castles, whacks them with a shovel, and proclaims, "I build a castle!")

Watching Ellie play with other kids.

Packing in just carry ons to discover a broken washing machine when we arrived.  Whoops.

Ellie feeding giraffes at the zoo.  The first one scared her.  After that, she thought she was the coolest thing around.  She woke up the next morning and asked me for a giraffe.

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Tuesday, April 15, 2014


We needed some sun.

Ellie loves the beach.  She loves throwing the shells back into the water.  And she loves to dance on the beach to the music in her own head.  And I love the sunsets.
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Sunday, April 13, 2014

Catching Up on Photos.

I had failed to post these last weekend after our awesome visit from Mark and Karen.

Matt and I were there, too, I promise.  I think it's time to work on getting Mommy and Daddy back into the photos!
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Sunday, April 6, 2014

A Good Weekend.

My brother in law and his fiancĂ© came to visit.  We had a great time with them.

Ellie was sad to see them go, and Matt and I feel the same way.

Karen offered to go down the slide with Ellie.  One person punked out.

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Friday, April 4, 2014

All the Animals. (Video)

Ellie and I went for a walk the other day.  She loves being all the animals.  Sorry the video is shaky, she kept running up to me so I had to back up!

Happy Friday.  I am SO ready for National Boards to be submitted…. but looking forward to a fun meeting.
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Sunday, March 30, 2014

Born to Run.

Nothing screams "perfect 5K weather" like rain and wind and cold, right?

Despite the conditions (which have since deteriorated and now ice is falling from the sky), my family participated in the new Race 4 Respect in DC this morning, a race that benefits local Down syndrome groups.

We had a blast.

While I ran the 5K, Matt, Ellie, and some dear friends (one of whom has been helping me out with a bit of marathon coaching) hung out in a bakery, so Ellie and their twin toddler girls could carbo-load for their 1K race.

I had a great race, given that I'm training for a marathon, not 5K, and I ran hard yesterday.  I ended up as third overall female, so I was pretty excited with my 23:00.

As the weather worsened, I assume the race directors cut the kids race down to closer to a quarter mile, which was a good call.  The effort of trudging alone with lots of soaked layers was probably equal to 1K effort, and the girls loved it.

I should mention that the three kids with us were the youngest in the race, and toward the back, and received lots of cheers.  They were so proud.

Huge thanks to Bethany at Simple Charm Photography for sharing these photos with me and giving me permission to share.

Ellie was a little soggy after the race.

And a few taken with my wet iPhone, which I was scared to get out despite the Lifeproof case…. because a certain three year old ripped the case.  No joke.

The race was well organized, the volunteers were friendly, and a number of the volunteers were people with Down syndrome.  Finishes received dog-tags and participants received tech shirts.  My big complaint was the weather.  Oh, and I missed the mile #2 marker, probably because my hat blew off, someone behind me handed it to me (while passing me… grr), and I spent a bit of time attempting to put the hat back on my head while still moving at a decent pace in high winds!

We'll be back next year, and hoping for less rain!

Ellie managed to wake up from her post-race nap in time for gymnastics.  It's been a good day.
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Friday, March 28, 2014

To Be Aware.

Recently, I read a post that resonated with me - it was a post about socks.

As you know if you are a regular reader, we celebrated World Down Syndrome Day on 3/21.  I did a blog post.  My daughter wore her Buddy Walk t-shirt.  She brought cookies to school, partially because school was closed due to snow on her birthday a few weeks prior.

I participated in a blog hop and other social media campaigns.  I posted about our local organization's upcoming 5K fundraiser.

But I did not wear crazy socks.

In fact, I intentionally went sockless as my own act of rebellion.

No socks.

At some point, a theme for World Down Syndrome day was "Wacky Socks."  At one point last year, it was "Odd Socks," which was quickly changed.

I wasn't feeling it.  I don't love the idea of oddness being highlighted, and I'm not quite sure what socks in general and colorful socks in particular have to do with people with Down syndrome.  I know and love many people who participated in the socks campaign, but I felt like something was missing from the vision.

I would rather take action.

I loved the "Day in the Life" blog hop because blog readers who aren't particularly interested in Down syndrome were introduced to the reality of raising a child with an extra chromosome.  The blog hop archive will be a fantastic resource for new parents asking, "What will my life be like?" I participated in the hop because it was a way to invite other families into our story, and that serves a purpose.

What if next year, we didn't wear crazy socks? Instead, what if we called on the community - our Down syndrome community and our friends - to step out in bold love and respect for those who are different?  Michelle blogged about a group that did something similar… we should all take a page from their book.

What if we took March 21 and overwhelmed our communities with love?  What if we took the time to make small changes that could include kids who otherwise get excluded?  What if we offered childcare to a tired mom or invited a child with a disability to play?  What if those with typically developing children requested that the special education students be in their class next year?

What if the Down syndrome community took that day as a chance to make ourselves more aware of the disability community as a whole, to learn, and to serve where we can?

What if our friends with Down syndrome took March 21 to volunteer?

And their parents did too?

What would be the point?

If we want to raise awareness, then let's show people the gifts and contributions of those with Down syndrome.  Let's do that by serving other people with disabilities or differences.  Let's not simply say, "People with Down syndrome are here;" let's demonstrate that people with Down syndrome have talents to offer.

Some of my readers may remember the #HonoringMaura campaign.  A few big blog mentions from folks like Kelle Hampton and instagram was filled with photos of random acts of kindness.  Could we do something similar for WDSD?

Let's think creatively.

Need ideas about what we can do as special needs parents?  Check out this post, by a mama who has a little girl with Down syndrome… and the mama is deaf.  She calls us to do more.

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