Sunday, October 19, 2014

{31 for 21} Kids Who Eat Leaves.

I think sometimes about blogging less.  I'm crazy busy, and my life doesn't seem very exciting.  And I keep forgetting days of 31 for 21.  

I know I'll keep blogging though.  Sometimes, I get emails that remind me why.  

The area where I live is transient.  People move in and out frequently, and lose touch, and come back.  Awhile back, I received a Facebook message from a co-leader in youth ministry I hadn't seen in years.

She was moving back to the area and was pregnant with her second little girl - who had a prenatal diagnosis of Down syndrome and AVSD.

Sometimes, God knows what we need years before we do.  It's nice to have friends who live in the same place who have kids with the same needs, who can relate, who were friends before kids.

And whose kid with Down syndrome shares the same taste in leaves mine did at that age.

Ellie, 2011, right before tasting the leaf.

My friend's beautiful girls, big sister looking on as little sister eats a leaf.
Have a great Sunday.


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Saturday, October 18, 2014

{31 for 21} Friends.

A sneak peak of a little photo shoot for some friends, the youngest of whom has an extra chromosome like Ellie….


And in a crazy story for another time, I'll add that I knew these girls' mama before either of us had kids.

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{31 for 21} DNF and Small Talk.

I helped run a 5K today.

I didn't physically run the race, but I helped organize it, meaning I stood on a stage with a microphone and gave race reminders and MC'd awards and high fived kids.

At our 5K, we had a 1K Kids Fun Run.

Matt got Ellie all signed up.

And Ellie was not interested.

She ran maybe 200 feet and then decided to play with friends instead.

She ran the rest of the afternoon.

As an adult, I don't want to DNF (receive a time of "Did Not Finish.")  I don't want to publicly drop out of a race.  This may or may not have led to a hamstring injury a few years ago.  Ellie had no reason not to run, but she didn't feel like running.

I laughed.

But part of me wanted her to tough it out and race.

Except for one little problem…. that's not what Ellie wanted.  She wanted to run and then laugh.  She spent all morning running.  She befriended dogs.  She had a great time independently playing at the finish area.

Ellie isn't super competitive, and aside from her gymnastics skills (which are largely due to her flexibility), she isn't particularly athletic.

And that's fine.



As I was pondering this, I picked up a copy of a book I recently received, Small Talk by Amy Julia Becker.  She writes about what she's learned from her three kids, the oldest of whom has Down syndrome.  Although the book isn't about Down syndrome, Amy Julia writes about her daughter  Penny, and Down syndrome plays into Penny's story.  She talks about how Penny sees victory is listening and hitting the ball occasionally in tennis class, even if all the other kids are more talented athletes.

The book is full of little nuggets of wisdom and is easy to pick up and flip through.  True confession: I'm posting about it before I'm done.  I originally planned to read the whole book and write a full blog post on the topic next week.  Instead, expect snippets about Small Talk as I pick it up and ponder what Ellie (and other kids) teach me about faith.
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Thursday, October 16, 2014

{31 for 21} Throwback Thursday

I promise, I am getting out my real camera this weekend!  However, my "real camera" adventure this weekend involves photographing another family, not Ellie.

So while you wonder if I ever plan to post decent photos of my child again, here are some throwbacks of Ellie to keep you entertained.

NICU.









I'm glad tomorrow is Friday.
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Wednesday, October 15, 2014

(31 for 21} Looking for Happy.

Today is gross.

Today is rainy.

Today would be an easy day to feel generally sad.

So today, I am focusing on what is GOOD about having a child with Down syndrome.

1. The community of parents of children with Down syndrome is awesome.
2. Free preschool.  And it's good preschool.
3. Watching people's faces when Ellie does the splits.  Asleep.
4. Extra snuggles from low muscle tone.
5. I don't care if it's a stereotype, it's true of my kid - an extra dose of love.  (I went to give Ellie a kiss after I wrote that.  She looked right in my eye and yelled, "NO KISSES!"  So maybe an extra dose of love sometimes.)
6. Beautiful eyes.
7. Knowing that I'm blessed to have Ellie here.  Down syndrome is associated with miscarriage.  Our super early prenatal diagnosis made us aware of this risk.
8. Laughter.
9. We share.  (I asked Ellie what we do together and that was her answer.)
10. A three year old who is still small enough to carry when she needs a big hug.
11. So much personality.
12. A chance to impress my daughter with the sign language I learned in elementary school.
13. Splashing in puddles.

I could go on, but a certain little girl with an extra chromosome is seeking my attention.
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{31 for 21} Glasses. Again.

Ellie hates her glasses.

Hates.

At least, when they are on her.  Her babies, Curious George, stuffed shark, etc. all love her glasses.  Ellie has already scratched up her $270 pair of glasses to the point we need to replace them.  She has worn them on her eyes for a combined total of about 18 minutes since May when we picked them up.

Ten of those minutes were yesterday thanks to her classroom assistant.

I got this text from Kelly (who cares for Ellie before and after school) yesterday.


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Text from @kellyraed today made me happy.
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Monday, October 13, 2014

{31 for 21} Gymnastics Update and Inclusion.

I think the video speaks for itself that gymnastics is going well.

Ellie's teacher shared with me after class that one little girl was being "weird" about sitting with Ellie.  Kids notice difference, and that's okay.  Kids assuming difference is bad - now that makes me sad.  Apparently, after one little classmate was unkind, another announced that Ellie was her friend, melting the heart of Ellie's teacher (and my heart too, when I heard the story later.)

Inclusion is worth it.

There are tons of positive stories for every challenge.  The biggest positive right now is Ellie's ability to follow directions and try new things.

Sometimes, having a child with Down syndrome is hard.  Sometimes people aren't kind.

And sometimes three year old girls reach out and show that inclusion has a positive impact on the kids without disabilities, too.
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