Close.

Man, he is almost there.
My cute little dude doing his Frankenstein walk...
He'd love to show you in person.
(And, I'd love to show him off for you...)
Register to run with us May 12, 2012

Again.

(Written November 2011)

I wasn't sure Deak was 100% today, he wasn't terrible, but just kinda seemed a little off.
I cruised in the door from work, snagged he and Abby and began the trek to Shriner's for our biweekly physical therapy appointment.
I walked inside Shriner's carrying my 40 lb little big dude, because I did not have time to think about putting the stroller inside the car, and made it a mere five minutes late. Which is pretty much considered "on time" in my world's clock.
Mark, Deak's therapist, set up an awesome game with a real bowling ball and pins to encourage Deak to stand up from a sitting position and move his body forward, stepping if necessary.
Deak was a butt head.
He screamed bloody murder for the first 15 minutes, the only exception being each time the ball hit the pins and made a crashing sound.
Deak's therapist and I questioned his health and wondered if he just wasn't going to be into tonight.
It totally sucks when Deak isn't "into" it because it is such an investment of time and energy just getting there.
I was ready to be done.
I know I've done it a million times, but I don't care what kind of steel your awesome mom suit is made of, a screaming child can only happen for so long before your heart just hurts.
Deak's therapist said, "Let's just try one more thing."
I reluctantly agreed, already having moved closer to Deak in an attempt to pick him up and carry him home.

Something changed.
Maybe the new toy, maybe Deak's choice to give in rather than fight...
Whatever the reason was, he decided to cooperate.

Deak sat in his little red plastic chair, stood up and grabbed the table to stabilize himself in order to play with the toy the therapist had placed just outside of his reach.
He made it easy at first...
and then gradually pushed the chair back....

Deak is no dummy; He'd instantly recognize when the chair was placed to the point where his arm span could not reach the table without movement forward.
Then, he'd whine about it.
And then he'd turn his little head towards my direction and his eyes would look at me and say, "Really mom? Really? You're going to make me do this crap myself?"
Mostly, he gave up.

But, then....he didn't.

He stood up, quickly stepped forward with his right foot, and then grasped onto the table as if he was holding on for dear life.

One little tiny step.

One little tiny step that I was told he would never take.

One little tiny step that stole my heart and stirred my soul.

I turned to the therapist and said with welling tears, "He did it. He took a step. That was his very first one."

The therapist's smile may have been bigger than mine.

I am realistic about this step. I understand it will take time for this little beginning to become a big ending.

But this ride...this ride of hope that this boy has brought me on...is worth every single second.

My boy can walk.

He.can.walk.

(The first time I saw him)

From this...

...to this.

We are doing it again, and we are so excited.

We hope you will join us May 12th for a morning of filled with the kind of hope only this little dude has to give.

One Person.

One person can make a difference.

Take a dream you may have and make it a reality.

I promise you that you have the power to do it.

This boy of mine is pure inspiration.

Thank you for making my dream come true, we could not have done any of it without all of your support and help.

The check is being sent to The Chromosome 18 Registry and Research Society tomorrow, and I can't wait.

Look for us again next Spring. 

We will be back, and the dream will be bigger.

Love,

Jenny

Unbelievable.

I've struggled for two days now to come up with the words to describe all these emotions I am experiencing.  I just don't know how.

I drove to work this morning and saw someone (who I am not familiar with) jogging on the side of the road.  She was wearing my Deak's bright red "Run for Hope" shirt, the once unknown Chromosome 18 Logo large and white for all to see and hopefully learn about on her back, and the floodgates opened again.

What a miracle.

I felt very, very strongly while pregnant with Deak that his purpose in coming to this world was to "Bring Faith."  I moved forward running at times only on hope, that my son's purpose would allow him the opportunity to live and teach others what his little spirit was (and is still) trying to teach me. On Saturday morning, the purpose of my son's journey became actualized. 

The sea of red shirts running and walking, united together in spirit and time, all in honor of my son and his life purpose, was the fulfillment of a promise made from my Maker to me during my darkest days. 

Hope has prevailed.

 My husband and I discussed last night how this Run turned into something so much more than the initial fundraising thought I had six months ago.  Raising funds for research is clearly important and necessary, but even more so, we wanted every single person to leave Saturday morning filled with inspiration.  We wanted to do our best to demonstrate the power and strength of our Deak's message of hope. 

My gratitude to those who came, whether in spirit or in person, is unspeakable.  People have continued to donate generously even today, two days after the race. 

My heart will just never be the same. 

To those Spirit Runners who could not attend, I wanted to share a little piece of the morning.  Thankfully one of our friends and awesome race participants, was thoughtful enough to capture my most favorite moment on video.

I don't think a "Thank you" can get any better than that.

With love,

Jenny, Blair, Abby and Deak

You have forever changed us, for the better.

Until next year...

*I will post final $ numbers, once I get them organized*

The Night/Morning Before.

This is why I did it.

That smile.

Those eyes.

The two little arms that wrap around me tightly each morning as I pull him from his crib.

I am super emotional.

This boy has been here five years.

Five.Whole.Years.

I love what this event has not only created in terms of funding for research, but what is has changed inside my heart.

Thank you - from the most sincere place "thanks" can come from.

My deepest wish is that all of you will leave tomorrow morning with a little taste of the most awesome medicine I've ever found.

Hope.

Love,

Jenny

Race Packet Pick-Up

Just a reminder...

If you would like to pick up your race packets (bib, t-shirt etc.) before the morning of the race, they will be available at my home Thursday Night from 6-8 pm and Friday Night from 6-8 pm.  My address is located under the Race Information tab located at the top of this website.

I have had people pull together and save me this week. There has been so much to do, and I've needed help.  My dad has ran around all over the valley, running errands during the day that I cannot get to.  My mom folded and put together over 200 packets. My husband ran more errands, and quite literally "ran" the race route to help quiet my compulsive need to check the distance 567 times. Many others, in many ways have rallied and supported and given me strength to finish this week and create an event that I hope will be memorable enough that most of you will want to come back again next year:) 

I am so excited.

Beyond words excited.

Thank you for making this dream come true for me and my beautiful boy.

Participation List

Seriously? Saturday?

I am going a little bit crazy, but it's the most amazing kind of crazy I've ever felt. My hope is that all of you will feel of my sincerity and love when you walk or race with us Saturday. Whether it be, wearing shoes, or in "Spirit,"  I just want to do you and my boy justice.

A few people have asked me if I have received their registrations via our online system, and in a very few cases, I have not.  Overall, I have LOVED Runnercard and believe their online registration system has ran very smoothly.  There have been a couple occasions where people have not received confirmation numbers, or for some reason their card was not working properly within the system.  I've decided, for clarification purposes, to attach a list of all runners I have registered (NOT including any Mail-In Spirit Runner Registrations).  This list was updated Sunday, May 8th at 8:25 pm.  Anyone who registered after that will not be shown on this list.

So, if you have any questions, please click here.

Also, please do not hesitate to call or email.

Thank you.

Love,

Jenny

PS: My participant goal has been surpassed! Hooray! I am excited to see how high it will become...
Remember, even if you cannot make it, we would love to have you join us in Spirit.  Click here for details.