Monday, April 30, 2012

Marketing.

Monday mornings are my favorite.
 Deak began this year this school year, slowly picking up each foot and cautiously tip-toeing to his bus.
You should see him now.


This morning, I had to swiftly move in order to catch up with his running feet as he booked it towards the road, to the place where we wait for the bus together.

Dare I forget, he has come so far.

I was recently asked what I've learned the most from having been given this gift of Ring 18 in my life.  Sparing you the wordy details (I'll save that for the article), I've learned to hope.
Hope, to me, is not ideological and unrealistic dreaming...it is trusting that through each step of this journey I have with my son, as hard as they are at times, there is purpose in his story and power to be found within.  Simply put, it is going to bed understanding that tomorrow I will do it again, and we will be okay.
The run is two weeks away.  Register now to ensure t-shirt sizing and lower pricing. Registration goes up to $35 on the morning of the race.  My little human marketing machine is wearing his 2011 shirt today in an attempt to muster up some more runners. 

I'm pretty sure he will, if you can catch him.

Monday, April 23, 2012

Family.

When I was very suddenly thrown into a position of discovering my sweet baby boy may, at best, struggle with health issues for his lifetime, I felt so isolated.  I yearned for a connection with anyone who understood; anyone who could help provide any insight that might ease my aching heart and restore some balance within my logical brain.
Then, as I have mentioned before, I discovered the Chromosome 18 Registry and Research Society, and I found my home.
Deak is a rare little dude; even within the Chromosome 18 changes, his Ring 18 is quite rare and quite un-researched.  Thanks to facebook and attending a few conferences, we have been able to "meet" a handful of family members traveling this rocky Ring 18 road with us.  I promised myself, during my dark days, that when I was able to, I would do my best to support new families of our precious Ring 18 babies. I needed to know that the pain I was enduring would not be in vain.  I needed to turn my pain into power.

Then came Miss Jenna.


She was born with Ring 18 a couple of years after Deak and stole my heart.
Her parents are pretty amazing too (even if they are Patriot's fans).
We've been able to develop a real relationship with this family, while living across the country from each other.
We are family.

Please consider joining our run and supporting my Deak and his friends. 
There is only 3 weeks left...click here to register right now.

Really, how can you resist this face? :)

Tuesday, April 10, 2012

Run Flyer

My awesome and talented friend designed a beautiful flyer for our run.  I love it, and am excited to share it with as many people as possible.
Please pass it along, print it off and distribute anywhere and everywhere.
Our numbers are looking great again this year, and I am so excited to spend the morning of May 12th honoring my son and earning money for the Chromosome 18 Registry and Research Foundation.
I'm so thankful for your continued support.

Love,
Jenny

Click Here to get a copy of our race flyer.