Friday, October 7, 2011

2010 - you don't run, do you?

much of our life revolves around rett syndrome and many of my "extracurricular" activities revolve aroudn doctors, schools and therapists. 

to escape this one-track world and how it often results in a pounding headache, i regularly find myself pounding the pavement. it hurts sometimes. my body isn't built like that of a natural runner's body. but i work hard. i push myself. and i've found success. 

one day, these two worlds meant to be separate actually collided. 

we were at a study for rett syndrome and had signed up for leah to be seen by the visiting orthopaedist. she'd never been to one before and we were interested in what he might have to say. many rett girls suffer with scoliosis due to being confined to a wheelchair. walking often seems to be a natural fix to that problem because you are consistently using more of your muscles, so we weren't worried about that. but, ever since leah began walking, her poor squishy feet turned in funny and she nearly walked on the inside of her tiny right foot (they really are tiny). we were certain the orthopaedist would have an idea of what might help, or if it was even a problem in the first place. 

as we walked into his temporary workspace in a room at the children's hospital oakland, he watched leah {wearing leggings} enter first. he then greeted ryan and i {i was wearing a skirt} with a handshake and a hello. 
{miss ribbons in her leggins and me in my skirt...in all our hyperlaxity glory at the study}

"well, who have we got here?" he asked.
"this is leah," we replied.
"it looks like leah has some hyperlaxity," he stated and them immediately added, "she got that from her mother!"

i was kind of taken aback. we had just met this man and here he was, moments later, nonchalantly diagnosing leah and attributing her abnormality to me?

i think he sensed our quiet shock and confusion {maybe my facial expression wasn't so quiet?} so he went on to explain that hyperlaxity was when the knees don't sit in a normal position. instead, they push backward, beyond the normal range of motion, and lock into place - using the joints to rest, not muscles. he mentioned it wasn't a huge problem. 

then he asked, "you don't run, do you?"
confused, and a bit offended {i know i don't look like a runner, but...}, i responded, "actually, i do."
"well, not more than a mile at a time, right!?" he asked. 
"um, i've run two marathons and a number of half marathons. i run regularly 3-4 times a week probably 3-5 miles each," i retorted.

the look on his face was priceless. he was utterly shocked. "people with hyperlaxity have a very difficult time running long distances," he explained. "it takes so much extra effort to bring the knee out of its locked position with each step that it is usually exhausting to the runner. most can't run more than a mile at a time without stopping. and they're usually quite slow."

and then it all made sense. 

on training runs with my friends, i would try and try to keep our goal pace, but would almost always fall short. i was exhausted and just couldn't push any farther...or faster. but they didn't usually have a problem. even if they were tired, they could often push through without extra pain. 

i was so thrilled to have an answer other than i was weak or lazy! i really did try hard and pushed myself to the limit. 

i don't use this as an excuse to fall short or give up. although, i could. and it would be pretty convenient. but it seems strange to me to give up on trying when i obviously beat the odds in the first place. it's nice to know there is a reason and that when i'm exhausted and truly can't push on, my body is telling me to stop. that it really can't {and probably shouldn't} go any farther. and then i remember how much leah moves and runs each day, and i feel horrible for passing on this trait. but so grateful that we've both worked hard to overcome it as best we can and run

now that i think about it, i bet running is therapeutic for her too.


{video from jan 2010}

also in 2010:
 {january - ringing in the new year. leah was a bit nervous after such a whacky 2009.}
 {january - geeky avatar 3d glasses. we did it for sarah. maren, sarah, jaimi}
 {january - exploatorium fun}
 {february - kelli and kenzi visit. and we fulfill a childhood dream of visiting the full house houses.}
 {february - prom. as 20-something year olds. late 20-something year olds.}
{february - sequoia trail run. muddy, muddy, muddy, but oh-so-fun.}
 {april - new rett friends erica and avery. our lifesavers.}
 {may - great escape with kristen and lindsey. they're going to kill me.}
 {may - north shore hawaii with my main man.}
 {may - peter pan in the round with shafers and harmans.}
 {june - santa cruz with my beach babe.}
{july - independence day camping with harmans and katzs.}
 {august - the layton family}
 {august - rettaway. amazing.}
 {august - thirty schmirty.}
 {september - carrie underwood for my #29}
 {october - family picture courtesy of julia wade photography}
 {november - first official layton family movie night.}
 {november - my first turkey!!!}
 {december - dan and heather...and cannon!...come to visit.}
 {december - go car tour of sf with rach.}
{december - our rett mom motto. colleen and maren.}

2 comments:

ed and kelli said...

wooohoo tomorrow is birthday day!!!!

Amy said...

i "pinned" your family photo because I absolutely love the colors and I'm looking for family photo inspiration. Hope that's okay...
Happy Birthday!!