Spirit Runner Shirts

Wow!!
The shirts are finally completed and ready to be shipped. Thank you for your patience; next year I will try to "guesstimate" a little more accurately.

I am going to overstate again, how overwhelmed I am with your love and support. Proceeds are close to being finalized (just waiting for one more sponsor), but it looks like we've earned $500-$1,000 more than last year.
I am thrilled that we will be able to spend a week in San Antonio (Chromosome 18 Research Center headquarters) for the Chromosome 18 Conference this year. It is an expense getting there, and we haven't been able to go for the past two years. This year we are going to use $400 of the proceeds to pay for our conference registration costs (and that is using an affected family stipend), which will help us tremendously. We are so grateful to have this opportunity, and cherish this time with our Chromosome 18 family.

People are good. I am in awe of you and your generosity towards my family.
I am one lucky gal.

'till next year...
(I will post final numbers when they are completed).

Love,
Jenny

(Spirit Runner packages taking over my kitchen;)

2012 Picture Recap.

How do I express in words the awesomeness of this morning?

I can't.  Pictures are better.

I was lucky enough to have a photographer friend (Steve Peters) take all these amazing pictures.  In fact, there are LOTS and LOTS more...but, I tried to pick a few to share.

I can't look at them without crying; it was such a cool morning.

 Smiling with our big boy.

 The "Utah" Chromosome 18 Chapter.  Aren't they adorable?

Deak apparently wanted to show off his physical prowess for the crew.

Singing "Happy Birthday" in his ear...

 Thanks to Megan's family, everyone got to enjoy yummy Creamie bars.  In typical Deak form, he ate two.

 My cute sisters and mom, minus Kelli who was already gone.

 Boston and his mom; a new friend we met for the very first time race morning.  He has 18q-.

 Megan and Emarie...Deak's Chromosome 18 buddies.  They are also affected with 18q- and like Boston, also benefit from the research we are raising funds for.

 Deak and Grandpa.  They "ran" the route on the 4-Wheeler and cheered everyone on.  Deak was in Heaven.

 The Start Line

 I loved watching the sea of red move together...all for my little guy.

How cool is that?

 Ab and her cute cousins.

 My beautiful boy.

If you'd like to see a video of the awesome morning that includes many more pictures and live footage, click here.

2012 Deak's Run for Hope Video

Thanks to an amazing friend, Steve Peters, we have an awesome video depiciting our morning.

Take 4 1/2 minutes and experience the reason we work so hard to help my Deak and all of our other Chromosome 18 family members.

I think you'll understand.

Deak's Run for Hope 2013 will be even bigger and better.

Click Here to View the Video

Unexpected.

My sister, fresh out of the first six week newborn stupor, recently said to me, "Nobody ever tells you it is this hard."

My response?

"Yes, we do. No one listens."

Isn't that true for all of life's curve balls?
  We have to experience life, and its' unexpected shifts in motion and changes in velocity.  We have to feel, in order to truly understand.

I always knew I wanted to be a mother.  Though, I also always knew that it was my life's destiny to do something alongside raising children.  I knew my heart had enough steel to handle more. My experiences in life that some would call "painful," I have chosen to use for good.  There is so much hidden strength found in our ability to choose.  And, I choose joy.

As I thought back to my motherhood expectations before I had children, I realized that they focused on vivid pictures of supporting; watching my son play football, standing next to my daughter as she got dressed for Prom. 
Future memories...that was what I wanted.

I don't believe there is a mother who anticipates the journey of raising a child with special needs, and that's okay.  We learn really quickly how to survive. We wear masks of smiles and drink lots of caffeine to hide the worry that encompasses sleepless nights. We are strong. 

But...hidden beneath all of the struggle, is the most sincere understanding of purpose.  We know that our children hold value.  We learn how to fight for them.  We feel love so deeply, that my meager attempt at words could not justify.  

I certainly did not anticipate my motherhood experience to have brought with it an honorary doctorate level degree in genetics.  I did not anticipate sleeping in hospital chairs having not used a bar of soap in days.  I did not anticipate mail-order pharmacy confusion and debit card denials at the grocery store due to unforeseen medical expenses. 

But, the really cool thing is, I did not anticipate the strength I found within myself to hold my baby as I thought he may not make it through the night.  I did not anticipate having the ability to organize and direct events for fundraising that would profit thousands of dollars.  I did not anticipate the overwhelming sense of direction and peace that has come with choosing to turn our struggle into joy.

I get this good stuff, because of the hard stuff.  

And, I am okay with that.

I wish I could adequately express my gratitude to each of you, whether in person or spirit,  for experiencing our morning with us yesterday.  Rough totals are showing a marked increase over last year's proceeds and I am excited to share the final numbers as they become available.  I'd like to say I'm surprised to see the love and support shown for my boy, but honestly...I get it.  He has a way, doesn't he?  He makes me want to be better, do better and live better, every single day.  I hope he was able to touch you yesterday as well.

Here's to those unexpected miracles...take a few minutes to enjoy them today.

*Photo taken by Steve Peters at Deak's Run 2012

Online Registration Closed.

Just in case there are any questions, I wanted to clarify that online registration is now closed.  You are welcome to register in person, either at my house, or before the race tomorrow morning. 

Registration begins tomorrow at 7:00 am, and shirt sizes and availability are "First Come, First Serve."  If we run out of t-shirts tomorrow morning, we will gather your information and mail one to you within the next few weeks.  The registration fee is now $35 for adults.  Children may still register for $10.

If you have any questions, please feel free to email or call. I will do my best to return calls asap, but I am also working today and have limited availability until later this afternoon.

I am so completely in awe of the support we have received this year.  I did not anticipate this kind of a response and hope so deeply that all involved (near or far) will feel our love as we honor my son together tomorrow.

Thank you for making this dream a reality.

Love,

Jenny

Race Packet Pickup and Spirit Runner Details

Wow.
Time flies.
My emotions are over pouring this week in preparation for our run in honor of my boy.
I literally cannot control them.
I will do my best to siphon them into appropriate time blocks, but just remember Saturday morning...I gave you fair warning, and the floodgates will be open!

To those of you who are running in spirit...my appreciation to your thoughtfulness and generosity is out of this world. I am hoping (fingers crossed) to get my spirit runner t-shirts mailed by Friday.  I am sorry I won't have them to you by Saturday morning.  I can only control so much (though I like to believe otherwise:), and this was something I could not control.  I hope that is okay with all of you.

To those of you running/walking on Saturday, if you would like to pick up your race packet beforehand, I will have packets available for pick up Friday evening from 7 - 8.  You are welcome to stop by my house (see registration mailing address for my address) and pick it up early.  Race packets are also available Saturday morning, beginning at 7:00 am and continuing to 7:50.

Please any questions, email or call me.  I tend to respond to emails a bit more quickly with the craziness that embodies this week, but either are just fine. I want to help make this experience something that you will remember and continue to support every year.

With so much love in my heart...See you Saturday!!
Jenny

Race Route

Click here for a map of Deak's Run route. 

As you can see, it is a pretty flat run in a pretty quiet area with gorgeous views.

One week from today, the registration fee increases to $35.

Save yourself a few bucks and register early!

And, just because I think this is a cute picture...

Deak, around age 3, trying out his walker for the first time in the "real" world.