Live a Life less Ordinary: I Run For Series

We were surprised when my sister announced that they were having a baby. As a high school teacher who seemed to enjoy small children at a distance, she was the last person I expected to sign up for motherhood.  But sign up she did, and the baby preparations started at a whirlwind pace.

If you have ever been pregnant, the eighteen week ultrasound is well-known as a happy and exciting event. You find out if you’re having a boy or a girl, count the fingers, count the toes and put the blurry pictures on your fridge so everyone can admire your upcoming bundle of joy. This wasn’t so in my sister’s case. The ultrasound was halted when the tech mumbled something was wrong and disappeared. Shortly later, a doctor looked at the scan and gave a prognosis: Spina Bifida.

For those not familiar with Spina Bifida it is the most common birth defect with a worldwide incident report of about 1 in every 1000 births. There is no known cause or cure. In some cases a patient is not aware that anything is wrong until later in life. Spina Bifida is caused by a failure of the neural tube to close in the early stages of pregnancy, essentially a spinal cord injury. In Ellie’s case (and other severe cases), people are paralyzed to a certain degree, have related hydrocephalus (a condition more commonly known as “water on brain”, cerebrospinal fluid does not drain properly and requires a shunt to help the fluid drain), and what is known as the Chiari malformation of the cerebellum (or the hindbrain, the cerebellum is pulled down and looks more like a banana rather than a ball), as well as other medical concerns. 

Kids with disabilities were an unknown in our family and with every doctor telling us something different, we couldn’t fathom a future for her because there were too many variables. In the past three years of Ellie’s life she has had eight surgeries to correct life threatening problems with her shunted hydrocephalus. She has also had surgeries to correct the positioning of her feet. Another surgery to close the hole in her back where her spine protruded. She is paralyzed, wears braces on her legs and walks assisted by a walker. Her outlook is good, but the family joke is that Ellie is not allowed to get sick, any illness will result in a trip to the emergency room and that often leads to something much worse.

So I started running. I first started running to forget. To cloud my mind over with exhaustion and to push the “what if’s” out of my mind. To try to forget the hell that my sister and her husband were going through; a joyful experience suddenly changed into the most frightening thing in their lives. I ran through every airlift to the hospital, every ambulance ride, every MRI and CT scan. But running is a double edged sword: the more you run, the more you think, and what you often think about isn’t good. But there is a flip side, as the miles slip by you realize that any problem has a solution you just need to run a little further to find it.

So I run for Ellie and our new life less ordinary.

Ellie enjoying her first horse and carriage ride.

“Live a life less ordinary
Live a life extraordinary with me
Live a life less sedentary
Live a life evolutionary with me
Well I hate to be a bother,
But it's you and there's no other, I do believe;
You can call me naive but...
you know me very well (at least as far as I can tell
And I know what I need).

The day you came into my life
Well it took the bones of me, took the bones of
You blew away my storm and strife
And shook the bones of me, shook the bones of me
Just in time to, catch a ride to,
Something great, so come along and we can leave today.

Live a life less ordinary
Live a life extraordinary with me
My face had said too much
Before our hands could even touch
To greet a 'hello'
(So much for going slow...)
So race along with me lets
fill ourselves with curiosity
search around and find
something different every time
look inside the day
one looks is all it really takes
to live and learn and grow, along every path we go.

The day you came into my life
Well it took the bones of me, took the bones of me
You blew away my storm and strife
And shook the bones of me, shook the bones of me.
Just in time to, catch a ride to,
Something great, so come along and we can leave today.”

Curious George 2: Follow That Monkey

Life Less Ordinary

Lyrics by Carbon Leaf

Ellie’s favorite song and mantra for Team Ellie

Ellie (center) with mom Patti (right) and me (left) at 2013 Walk and Roll

If you are interested in donating to Team Ellie at upcoming Spina Bifida Walk and Roll just let me know and I will send you information as it becomes available.

Best,

Cheryl