Deep.

I read an article floating around the Internet recently, written by a parent who recently experienced the death of their son. They described their emotional experience as being both deeply painful and deeply joyful. The contradictory experience of loving a child who either has endured or does endure daily pain is nearly impossible to describe. I have too, experienced pain on a level so deeply, that I did not, and still sometimes do not, know if I will recover completely.
But, with that deep pain, comes deep and profound joy. In a conversation with my dad earlier this week, I told him that I truly believe I've been blessed to have been given the rare opportunity on this Earth to experience a love so pure and unconditional. My love for Deakon extends to the inner parts of my soul where my darkness lies, and allows me ample opportunities to continually re-examine the core of what I choose to stand for. His love in return is real, constant and genuinely driven.
It's deep. On a level I'm lucky enough to witness daily.
I'm pretty sure anyone who truly knows him, would say the same.

My boy is continuing to endure through his daily struggles with dimpled smiles and clapping hands. He is communicating his needs and walking around the school all day long like a champ.

I received this picture in a text message from a friend during a particularly rough morning this past week. My heart stood still...then I ran around my office like a crazy person proudly showing off my 7 year old boy walking on his own.
The same boy who was never supposed to live.

Come join us Saturday May 4th. Catch a glimpse of this deep joy and fill up your emotional bucket. We would love to share our morning with you. Register online or via mail with details noted at the top of this webpage.
Much love,
Jenny

Updated Sponsorship Information

I have finally had a few minutes to update the 2013 Fundraising/Sponsorship letter for Deak's Run. 

Please, feel free to email, print, and share as you see fit. 

There are two forms, the letter, and the sponsor form; both of which are helpful.  The form details the sponsorship levels, and the letter explains the reason we are doing the fundraising.

I appreciate you all.  Spreading the word, and asking for support are so extremely helpful.  The past two years, our expenses have almost been completely covered by Sponsor donations, which has allowed us the opportunity to donate even more to our cherished cause.

Visit www.chromosome18.org to learn more about Ring 18, and other conditions on the 18th Chromosome.

Click on the "Sponsor" tab at the top of this page, to find the updated sponsor letter and form.

Thank you, Thank you!!

The Chase

I've sat inside restaurant waiting areas for 6 years, watching other families wrangle with their squirmy toddlers; fantasizing about what my Deak may be doing had he been born with the ability to do those kind of things at the appropriate age.

My heart, though quite healed, still meanders around "what if" land on occasion. Especially around little boys.

Tonight, six years in the making, my hopeful day-dreaming became a reality: we braved Red Robin with the walker.

Deak has been able to walk in his walker for a couple years, but has lacked the endurance to do so for a lengthy period of time. Due to his newfound ability of walking unassisted, the walker has become a tool for endurance walking, rather than supportive walking, and we are attempting to incorporate it more often in his life (he uses it at school daily, as he only method of getting around).

My heart leapt as I watched him cruise through the waiting area mock 90, and maneuver himself inside the small video game area. I privately whispered sincere prayers of gratitude as I chased him around the restaurant while he attempted to join others' at their tables and steal their food. My eyes welled as I listened to his sweet laugh while quickly cruising down the accessible ramp to our car.

I am so genuinely grateful for the opportunity to chase him.

I get to chase my own little blonde boy.

Man, I've waited a long time to say that.

My boy can walk.
He can walk.

I'll never ever tire of it.
Ever.

PS: If you see him coming, get out of the way fast. The crowd at Red Robin have the battle wounds to prove it.

Join us Saturday morning, May 4th to see him in action :)

*Reprint from our family blog

Save the Date.

It's official.

We are doing this again.

We would LOVE for you to join us, May 4th 2013 at 8:00am, either in person or in "spirit."

If you are super organized, you can even register now by clicking here.

This little dude will probably walk to you by then.

Final Race Numbers.

I've been waiting for a month to finally post this, and I am excited to share with finality that we exceeded last year's numbers!!

Net Proceeds:  $7,125.00

                        - $400 (Chromosome 18 Conference Fees for our family)

                        - $725.00(Savings Carryover for Next Year's Event Expenses)

                       __________

                        $6,000.00 check being sent to the Chromosome 18 Registry and Research Foundation 

Hooray!!!

I am in awe of our generous support and excited to see what next year will bring!!!

Thank you, thank you, thank you.

See you next May!

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.