Tuesday, September 4, 2012

This Day

Five years ago today we took Elijah home from the NICU. It was one of the best days ever.
Yes, I share this photo every year
As I sat on our chocolate brown couch clutching our three week old baby, I thought (hoped) our journey had ended. I didn't quite realize that our journey had just begun. Our world would soon be immersed in therapies and we would begin to collect diagnoses, one of which is cerebral palsy (CP).

Today, the anniversary of Elijah's NICU homecoming, is World Cerebral Palsy Day. Seems fitting, doesn't it?

I thought I'd share two things for you to peruse in honor of this day:

This post (by Ellen of Love that Max) in which she describes what CP isn't and also what it is.

This excellent video by an online support group friend, Rachel (her adorable son Cohen reminds me so much of Elijah!):


Five years ago we got our son. We also got CP. But CP certainly didn't get him.
Stumbo Family Story

Thursday, August 30, 2012

Reluctant Celebrity

Incognito family at the State Fair
Last Fall we went to Texas. At the airport, I saw a lady standing about ten feet from us in the security line. She caught my attention because she seemed a little out of place. Dressed in black from head to toe, she was also wearing her sunglasses inside. Who does that? I thought.

I glanced at her and went back to tending to Elijah, who was jumping up and down. He would have run through the airport if I let go of his hand. The little girl in line ahead of us, pulling her rolling backpack just like her mommy's, was staring at Elijah as I tried to manage our boy and my bag.

Just then my mom leaned over and said, "Hey, that's Diane Sawyer." I glanced back at the woman in black and realized that it was indeed the news anchor.

As I grabbed my shoes to place them back on my feet, the TSA agents were chatting with each other.

"Oh, she tries to be all inconspicuous, but we know who she is," one said.

"Diane Sawyer, right?" I said with a sly smile, even though they weren't talking to me.

"See!" one of the TSA agents responded. "She noticed her. Oh, some celebrities come through and want everyone to notice them, but she tries to be subtle. We still know who she is, though."

"I wouldn't want to be a celebrity," I told them as we gathered our things from the security checkpoint and we all pondered the lives of the famous.

Back home after our trip, Andy, Elijah and I went to the grocery store to replenish our refrigerator after being gone for two weeks.

As we perused some things and Elijah jumped up and down while holding my hand, I could sense an older gentleman standing nearby staring at our son. Just when I was about to say something (because he was kind of freaking me out) the man said, "I have a grandson with problems." His voice and face were full of melancholy. I honestly didn't know what to say. Obviously, Elijah must have reminded him of his grandson and brought up sad feelings, but I wasn't so fond of how he handled approaching us - by staring and standing super close (and generally creeping me out). I think I said, "Oh," smiled at him and we all went on our way. He didn't offer up any more conversation and neither did we.

Sometimes I think I know how it feels to be famous; it feels like there are eyes on us wherever we go. Often they are happy eyes, as I hold our son's hand and he bounces down the sidewalk like Tigger with a huge smile on his face. Most people smile back. That's when I don't mind that people notice us.

When we're met with blank stares or pity or just general disgust, I kind of hate standing out from the crowd (oh, I notice). I understand wanting to be inconspicuous, to just blend in with everyone else, to be able to go to a grocery store (or an airport) and to be able to melt into the background.

I think our little family gets, at least to a tiny degree, what it's like to be famous. Sometimes it'd be nice to throw on some black clothes and some sunglasses and go incognito. I get it, Diane Sawyer. Sometimes, you just don't want all of those eyes on you.
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