This was originally posted two years ago over at New York Family, when the first Rafi’s Run was taking place. I am no longer 39, Kiddo is no longer in preschool, and I can't run this year due to back woes, but the message of this Life Nugget still resonates.
The third annual Rafi’s Run is right around the corner on March 9, 2014 in New York City. If you want to know more about one amazing girl named Rafi, Rafi’s Run, and EB, please check out www.rafisrun.com.
I’m full of them. Life Nugget #46: 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 my 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, a 5K to raise money to find a cure of 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 with 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 lying on the floor 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. Number #12, honey.”
“Yes, like Santa. Or germs.”
“Do they look like mine?”
“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 up. 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.