Monday, August 24, 2015

A Happy Heart/Tink and Key.

Four years ago, we received a great gift.

Ellie with a working, whole heart.

Okay, so her heart isn't perfect.  But it's functional, thanks to the doctors who performed surgery on a little baby, repairing holes and correcting valves on a tiny and vital organ.

The doctors gave Ellie a zipper, a healthy heart, and a new lease on life.

Each year, the anniversaries of most early Ellie milestones matter less to me.  But this one matters more.

Ellie's open heart surgery is the reason we have Ellie.  And as we get further from her surgery, we get further into the years we wouldn't have without it.  The memories of the day are fuzzy.... Ellie trying to crawl off the table before surgery (she couldn't crawl yet), her godfather bringing us Chipotle as we waited, a two way pager that told us when surgery was complete.

Ellie, we love you.  And we love your zipper.  I hope you are always proud of your scar!





Ellie bought her friend Audrey (a fellow heart baby with Down syndrome) a "Zipper Club Member" shirt for her first birthday in January.  In February, we posted in honor of CHD Awareness Week and gave away a zipper club shirt.  But Ellie hasn't owned one... until now.

Tink and Key generously gave Ellie her very own zipper club baseball style t-shirt, and Ellie loves it. It's soft, it's adorable, and it's a fun way to celebrate a scary but important milestone in our lives.


Clip by Jude&Fi.



Want your own?  You can get 25% off any of the Tink and Key t-shirts with the code: SUMMERBLOG15.  You can also check them out on Facebook, Instagram, or Etsy




Notice that these photos aren't all mine?  The very talented Jessica Mellon is helping me out lately with Megan Landmeier Photography, and she photographed Ellie alongside me for this post.  


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Wednesday, August 12, 2015

I haven't forgotten...

I haven't forgotten this little space online.  We are just in the process of some major (positive!) life transitions combined with the end of pregnancy exhaustion.... so in the meantime, follow along on Instagram for daily(ish) looks at Ellie's life.
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Wednesday, July 29, 2015

Inclusion Matters: A Big, Public Thank You.

Google just failed me.  I have seen statistics about the percentage of special needs families who feel unwelcome in church, and it's a big percentage, but I can't find it right now.

But I know a lot of people who stopped going to church because of their child's needs.

Public schools, sometimes criticized by the greater church community, are legally obligated to include our children in the least restrictive environment, even if our kids have big medical or behavioral needs.

Churches, called to serve all people, certainly don't have to include kids like Ellie.  Some do.  Some don't.

Here's an example.  A policy can state that child must be potty trained to attend certain events.  But some kids require extra time for potty training due to low tone, low sensory awareness, poor motor skills, and being on medication which can cause some.... issues.

That policy might exclude a lot of kids with disabilities.  So can lots of other policies, written or unwritten, that make it a challenge for kids with disabilities to feel included.

So here is my big, public THANK YOU to our church.

The only solo picture I have of Ellie from the week.  I don't have photo releases for the other kids.


I've never been made to feel like my kid didn't belong in Vacation Bible School.
I never felt like it was "my job" to help my kid exclusively, and I did feel like it was a team effort.
I never felt like Ellie was anything less than a valued child in our community.

That's how it should be.

Ellie has been singing songs from Vacation Bible School (VBS) nonstop since last Tuesday.
Her theology isn't always great, my favorite being "Jesus is at work FOR us" (instead of through us).

She stood onstage with her friends while they sang at church on Sunday, and while she didn't sing all the songs, she stayed more or less with the group and was included.

Truthfully, this shouldn't be news.  The church should be the most inclusive and safe place I could bring my daughter, but I know from other parents that isn't always the case.  Jesus looked at people with disabilities with compassion and viewed them as valuable.  My child's inclusion in church and religious education shouldn't be something special, but it's something for which I am grateful since not every child gets Ellie's overwhelmingly positive church experience.

So this is a thank you to our church community for including a kid who might be excluded somewhere else.  Thanks for doing the right thing and the biblical thing.  Thanks for loving Ellie.
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Tuesday, July 28, 2015

30/52.

In the coming weeks, you'll be seeing a fun series of photos that were taken by Jessica Mellon of Ellie and me.

I did manage to take a few of Ellie myself, and I'm also sharing a picture of me that is NOT a selfie!  What?  Few of those exist.





Linking up at Practising Simplicity.
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Tuesday, July 21, 2015

She'll Never....

I have a confession.  When I got Ellie's Down syndrome diagnosis, I thought a lot of, "She'll never..."

She might never drive. (So what?  We live in an urban area with public transit.)
She'll never be a doctor. (Um, neither will I.)
She'll never be a model. (Um, neither will I.)

About that last one.

Ellie was on the local Down syndrome calendar as an infant and is on the cover of a book about speech and language for kids with Down syndrome.

And now, she's modeling for The Crazy Kukla Boutique.  I don't really care if Ellie is a model.  But I care that a "never" was replaced by a "why not?"




Ellie's value isn't in modeling or looking cute or driving or talking or being a doctor.  Ellie's value is in being a human.  Ellie's value is in loving people and being loved.  But sometimes, it's really nice to remember the "nevers" and realize those were a list of my fears, not a list of real restrictions.
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Saturday, July 18, 2015

29/52.

All I have to say about this week is that there's something fun in the works between my photography business and The Crazy Kukla Boutique, all in the name of #ChangingTheFaceOfBeauty.


Linked up at Practising Simplicity.
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Friday, July 17, 2015

When Ellie Was a Baby.

In order to prepare for baby sister, we've been talking a lot about when Ellie was a baby herself.  We've also been talking about the various medical procedures she had as a baby.

I'll let Ellie speak for herself here.
A video posted by Megan Landmeier (@meganlando) on

A video posted by Megan Landmeier (@meganlando) on
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