Tuesday, January 14, 2014

Beauty

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. 

Sunday, January 5, 2014

Army

(Disclaimer: Between fevery nights, sleeping in a recliner and toddlers who wake up early, Mr. Sandman has not been kind lately. This post may or may not reflect that.)

Five days into 2014 and I call for a do over.

Sickness has kicked us where it hurts. Ben spent the Christmas holidays under the weather and after a scary, almost-took-him-to-the-ER night, we got some meds in him and Brother is good as new. Thanks to those fun germs, Grandma and Grandpa left the 'View with a little more than they came with. (Sorry 'bout that...) 

Fast forward a few days. We rang in the New Year semi-unscathed, only to wake up to a feverish little Alexis. My heart wanted it to just be those teeth giving her trouble, but my head knew otherwise. She and I spent that night snuggled up on the couch. I called the CF Clinic the next morning. Since Micah was out of the country, Ben stayed with friends and Sister and I made the trek. 

Auntie Bee was able to meet us there and we spent the next three hours waiting to hear whether or not Alexis would have to be admitted into the hospital. 

"Based on her diagnosis, the fact that we are entering the weekend and that you live so far away, we are going to keep her here." 

Freakin' flu. 

Truthfully, once her fever finally broke, she was a ball of energy. Our hospital visit was basically just a big precaution. 

We are home now; our first official CF related hospital stay under our belt. I feel a little relieved about that. I'd love to tell you that she will never have that happen again, but we all know that's not true. So I'm grateful (is that the right word?) to know what to expect for next time. 

I feel like I could sleep until Wednesday, but other than that we have survived. 

I'm so thankful for Dallas Children's. It takes a special kind of person to take care of sick babies and Lexi's doctors and nurses were no exception. 

It's always amazing to me how big our village has gotten. I love when the village turns into an army. Those you thought you could depend on drop the ball, while those you never thought about carry it with gusto. 

Thank you for your prayers. They are felt. 

Thank you for standing beside this Mama Bear; never wavering. 

Onward now. Let's march.