Rafi's Run

Hey all. So this is a really important post. A post I should have published much earlier than today, but you know how Life is; it just didn't happen that way. Anyway, here is the gist, the setup: My girls attend a wonderful preschool that we simply adore and another child at their school, a wonderful little four-year-old girl named Rafi, is suffering from a terrible disease called EB that has no cure.

This Sunday, tons of people are gathering to participate in Rafi's Run to support little Rafi and other children with EB. My very good friend and very talented writer Heather Chaet (who is walking on Sunday; I am not able to participate) wrote a post for New York Family about Rafi and the upcoming run and I am grateful that both Heather and New York Family agreed to let me reprint the content of that post here. Please read on as Heather's words are as witty as they are weighty. {She does not yet know this but I have secret plans to snag her as a regular guest-poster here at ILI...}

Life Nugget 7: Perspective Is Everything

Learning Life Lessons As A Lead Up To Rafi's Run

by Heather Chaet

I’m full of them. Life Nugget #16: No matter how tired you are, wash your face before going to bed. Life Nugget #31: Never buy produce in bulk--you will end up tossing some of it. Life Nugget #24: Perms are always a bad idea.

Little bites of wisdom, droplets of know-how, morsels of helpful mental notes I’ve collected in my 39 years that I think are important to point out to Kiddo. These are Life Nuggets.

However, as I found myself face down on the floor of our apartment, spread eagle with my left arm caught under our couch, one Life Nugget in particular came to mind. Life Nugget #7: Perspective is everything.

For a moment, picture when you vacuum around your couch. You move it out from the wall about a foot and suck up bits back there. Then you return it to its position, and get the area right under the front where the vacuum head thingamajig kind of fits. But there is swath of floor--maybe four inches wide along the whole the length of the couch--that doesn’t get touched. I’ve dubbed this land Dustbunny Canyon.

I inspect the inhabitants of Dustbunny Canyon as I try to wriggle my watch free from where it has snagged on the gray underbelly of the couch. The tally so far: four ponytail holders (one yellow, one pink, two black); nine Squinkies; four tokens for Hello Kitty Bingo; the left wing for Phil, our one-winged pterodactyl; two pens; one sock; a string cheese wrapper; a health questionnaire from my OBGYN from…wait for it…2009; and what I believe to be approximately 39 tiny, dried pieces of rice (we love our Chipotle burrito bowls).

How I came to be in this position is a really good question, for which I have a really embarrassing answer (though, according to Life Nugget #9: No one can make you feel embarrassed but you). I was trying to find my tennis shoes. By this admission, you now know it has been so long since I exercised this body o’ mine that I can’t even remember where my tennis shoes are.

Why do I need to find my tennis shoes? I signed up to do a 5K--a very special 5K--to raise money to find a cure for a rare genetic disorder called Epidermolysis Bullosa, or EB for short. Those that suffer from it can't produce a certain protein that allows the layers of skin to bind to together, resulting in skin so fragile that the slightest friction or bump will cause blisters and tears. They are known as butterfly children, they do not live into their third decade of life, and they live in constant pain--they are like Rafi, a little girl in Kiddo’s preschool who was diagnosed at birth with a severe form of EB.

So, I need to find my tennis shoes to walk to raise money to help find a cure for Rafi and other children like her, yet I am on the floor searching for what seems like way too long of a time. I start to get annoyed. Really annoyed. I am annoyed at myself (for being a not-so-great housekeeper), at my husband (for buying me the watch that is snagged on the couch), at Kiddo (for liking those impossibly-small plastic things), at the makers of his couch (for building a couch that has watch-snagging material).

Then Kiddo (who likes those impossibly-small plastic things) bops into the room.

“What are you doing, Mama?”

“Looking for my tennis shoes.”

“You have tennis shoes?”

Sigh. “Yes, I have tennis shoes.”

“I’ve never seen you in tennis shoes.”

“Well, just because you can’t see something doesn’t mean it doesn’t exist. Nugget #11, honey.”

“Like Santa?”

“Yes, like Santa. Or germs.”

“Do they look like mine?”

“Your germs?”

“Your tennis shoes.”

“They are white with a blue stripe…or maybe purple…I think.”

“You mean the ones over there behind the umbrellas?” She points across the room, by the front door.

I see them. The left one peeks out from a black curtain of water-repelling nylon, taunting me.

The stripe is red.

My arm is numb from being the same position for so long. I tug harder. I try to get my other arm under the couch to undo the watchstrap. My neck spasms. I give it one more huge tug and, with a loud rip, my arm is free.

I am now more than really annoyed. I am full-on peeved, dirty and in need of some Motrin with a wine chaser for this spasm.

I look at Kiddo. She twirls about with my once-lost, now-found tennis shoes on her hands. She goofs around, doing a hula dance with them, and bumps into her little table. She keeps on dancing. Kiddo is without pain as she does this. I think of Rafi and how she beams with a smile just like Kiddo, despite being covered almost fully in bandages every day. I think of Rafi’s parents, who enjoy seeing their daughter’s smile as much as I enjoy seeing Kiddo’s.

Dang. Life Nugget #7: Perspective is everything.

I take a deep breath. I’m no longer annoyed. I tell Kiddo to hide my shoes again as I count to 10, and we will see if I can find them.

If only finding a cure for EB were as simple as finding my tennis shoes.

If you want to know more about EB and the First Annual Rafi’s Run on March 11, please check out the website. I’ll be updating everyone on how it goes--and exactly how sore I am on March 12.

rafisrun.com

Please take a moment and visit the Rafi's Run website to donate directly to this wildly important cause. And for every comment left here before the race at 10am on Sunday, March 11th, I will donate $10.

Do you ever stop to realize how fortunate you are to have healthy children? Do you have any experience with EB? Isn't Heather a wonderful writer?