Tuesday, January 14, 2014


Down syndrome is one of those things that causes you to look at the world a different way. Seeing things through Ben's eyes has been a God-given adventure. His infectious smile and genuine hugs are unmatched. He shows love better than anyone else I know. The kind of love that cannot be taught or understood. I've heard that so many times throughout this DS journey: "They love like nobody's business." Down syndrome is a beautifully misunderstood diagnosis. We are afraid of what we don't understand. At first, I didn't understand. Hearing professionals say that your child will be "different" is never an easy piece of news. I get it. And I'm not ashamed to say that it took me a good while to find the beauty.

Then there's cystic fibrosis. Can we just be honest? CF sucks. Seeing Alexis sick in the hospital was one of the hardest things I've ever experienced as a mother. And, unfortunately, CF and the hospital are like that freakin' peanut butter and jelly sandwich. And oh how I wish that wasn't true.

This is a constant learning experience for me. This balance of diagnosis'. This finding the beauty. I told God just the other day... "I just feel like I should've found it by now."

So let me start over...

Benjamin is one of those kids who makes you look at the world a different way. Alexis' baby blues and infectious giggle are unmatched. The love my kids share toward each other can't be taught. Ben can't meet a stranger. I'm jealous of my daughter's curls. 

Benjamin has Down Syndrome. 

Down Syndrome does not have Benjamin. 

Alexis has Cystic Fibrosis. 

Cystic Fibrosis does not have Alexis.

It's like this: God's got this gentle way of grabbing me in the gut and giving me these "ah hah" moments occasionally. Just reminding me that I'm not alone. That I won't find the beauty in either diagnosis because that's not where it lives. Beauty is defined by the people who possess it.

Today those people are Ben and Lexi.

So take that and go love like nobody's business. You're welcome.

P.S. I had the honor of writing our story for a magazine called Christian Women's Voice. If you'd like a copy, head over to christianwomensvoice.org or click on the cover on the right side of the blog. 

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