Awake.

About a year or so ago, I began the process of accepting that Deak may not ever walk truly unassisted in this life. He was turning 6, and I knew the research; research that I should know better than to pay attention to. I was private in my grief, ashamed of the fact that although I never gave up hoping, I knew that the loss of this stage of development equated to a loss of several independent stages that I had always hoped were going to be available to my boy.

I knew I needed time to heal.

Deakon has been blessed with an amazing team of teachers this year. Teachers who believe in pursuing and exceeding expectations. Teachers who truly love; love enough to know that sometimes the easiest way is not the best way. These women have challenged Deak to become better and stronger. They have given him opportunities to trust his own abilities, and they chose not to give up. Ever.

This year at school Deakon has advanced from enduring walking in his walker, to thriving while walking in his walker, to walking with assistance using only a dowel, to walking with minimal assistance using only a small handkerchief to hold onto. He does this walking continually, for 6-7 hours a day at school.

He can walk.

While sleeping, I used to dream often of my boy walking by my side, his little blond curls bouncing with the breeze. I dreamt of holding his hand in grocery stores and watching him walk towards the playground at the park all on his own. These dreams although beautiful and personal, could also at times be heavy to bear. Not knowing if they were meant to be actualized in this life or in the next.

This morning, I awoke to the sound of joyful squealing and laughing. When I realized that the sound was close, I opened my eyes. I opened them just in time to see my son walking across the room to my bedside, a giant smile plastered across his face as he thought he had gotten away with stealing my iPad.

I took a moment to feel, and my heart swelled with gratitude.
I no longer only see my son walking in my dreams.
I am awake.

Register today to join us next Saturday for a morning you won't forget. Online registration closes the night of May 2, and prices go up $10. We'd love to see you (in person or in spirit:)

Love,
Jenny

Raffle GiveAways

I am SO EXCITED to announce that once again, Silverstar Resorts in Park City has donated a stay at their luxury condos to one of our race participants! This is an amazing place, and I am happy that someone will get to experience it:)

We also have some $25 gift certificates to Tri-City Nursery, 4 all day passes to Boondocks Fun Center, a 3 month family membership to the Kaysville Sportsplex, a 1 month session with a trainer at Kaysville Sportsplex, gift certificates to Great Clips and possibly more!!

I am so grateful to my family for taking the time to help secure these donations, and I am so grateful to all of you for choosing to spend your morning with us on May 4th.

It's 2 weeks away!!!
Register ASAP...:) We'd love to have you join us and win one if these awesome prizes!

Love,
Jenny

Courage.

“Courage is resistance to fear, mastery of fear, not absence of fear.” — Mark Twain

I am afraid.
I've learned to shove it aside while working, carpooling and folding laundry.
But...it still manages to creep up and simmer; boiling over mostly when my house is sleeping and my mind won't shut off.

Deak stood up on his own in the middle of the floor several times tonight and walked with secure stability over to the couch where Blair and I were sitting.
It was so cool.

But, those stable walking legs are going to go through hell in a couple months and it breaks my heart to even let the thought flutter through in passing.

Deak, to put it simply, has to have a sort of double hip replacement in June. It's a lengthy hospital stay combined with a 6 week recovery, combined with months of physical therapy to regain his lost muscle strength and muscle memory.

The last time we had a surgery, we almost lost him.
I don't want to almost lose him again.
I've almost lost him enough.
I don't know if I can do it again.
I don't know if I can sit in that damn OR waiting room.
I don't know if I can watch him cry the kind of cry that only exists when one's body is experiencing physical pain.
I don't know if I can bear the loss of the tremendous progress he's fought so hard to have made this year, only to watch him have to do it all over again.

I just don't know if I can do it.

People sometimes tell me I am strong, but they have it all wrong.
I am scared out of my mind.
I survive most days by resisting the urge to let my mind go there.
But, some days I lose the battle.

My Deak, he is the strong one; The most pure form of courage I've ever known.

Some days, I just wish so badly he didn't have to be so courageous.

Join me May 4th, in celebrating my boy and his courage.
You won't leave uninspired, I promise.
Register ASAP to help ease his crazy mama's mind :)

See you soon.
Love,
Jenny

Stay Together.

Deak has always had a strong preference for certain types of music; rap and soul to be specific.
It's just his thing. He bops his head to the strong beats and grins from ear to ear while waving his arms a' la Stevie Wonder.
A few months ago, during an especially rough period of time, Deak and I had the night to ourselves.
I admittedly, often take these times for granted and find excuses to work or clean the house (I have a problem with sitting still).

But, that night, I didn't.

I needed him...perhaps hoping to steal a string of strength to cling onto.
We lied together on our family room floor and played songs on my iPhone; Deak breaking up the music with intermittent body slams and kisses.
As the playlist shuffled to Al Green's "Let's Stay Together," he inched his perfect body towards mine and wedged himself in between my legs while curling his fluffy head of hair into the crook of my neck.
I looked at him and sang "I am so in love with you...," and gently rubbed his little hand while it laid on top on my own.

Then, we just were...for a while.
And, I picked myself up from my low place and gained perspective.
Man, what would my life be like without him?
I can't imagine.

Since that night, that song has become "ours."

I whisper it in his ear when he is upset.
I sing it, cheek to cheek, as we wait together for the school bus to pull up to our driveway.
I am forced into repeated renditions during moments of boredom.

We belong together, he and I.
This baby boy, created in love, was meant to lie his beautiful hand inside mine forever.
And ever.
Even when I don't deserve it.

I am so in love with him...

Register today and join us May 4th for Deaks's Run for Hope.
He is worth it.
We'll even play you some soul.

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