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
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