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.

A Mother.

Before I found out about Deak, I experienced four days of the "normal" nesting rituals that inevitably ensue upon hearing the words, "It's a boy/girl." 

I shopped.

I ordered a little onesie with an embroidered applique that read, "Mommy's Little Slugger" among other things I deemed absolutely necessary.

Those packages were carefully put away by my sister, unopened, inside the closet of the room we had stopped preparing for our Deak when the doctors told us he would not live.  I couldn't bear to even look at them.

The weekend of Mother's Day 2006, something inside of my husband must have told him, this little guy we were hoping for was going to make it.  He snuck my daughter, Abby, away and together they picked up the paint we had chosen for our boy's room.  Together, they painted. 

The project they so thoughtfully dug themselves into obviously signified more than just a colorful nursery for our Deak to come home to.

They were paint strokes strengthened by a hope we were learning to hold to onto.  It was an acknowledgement that we were going to do this; love this boy with all we had to give.

It was hope that this boy the world told us would not live, would. 

That his purpose would carry him home with us, at least long enough to sleep inside the room we had spent hours creating and dreaming for him.

I had Deak, unexpectedly, the very next day.

May 15, 2006

My most favorite Mother's Day gift ever.

*November 2007*

*Christmas Eve 2010*

There is still time to register.  Online registration will stay open until Friday at 5:00 pm. 

Day of Race Registration will be available this Saturday May 14th, from 7:00-7:30 am.

Goodness.

I believe in the goodness of ones' soul.  I've brought it up through this website before, and I'll continue to state it until I no longer can. 

People are just good; I will always believe that.

This race has turned into more than just the "little 5k" I had planned on.

It's big (to me, big).

Way bigger than I had envisioned for this first year, newbie race director's trial run.

The more I wet my toes with the opportunity for funding this could provide to my son and his Chromosome 18 buddies, the deeper I want to swim.  I'm afraid fundraising is my new drug of choice.

Good people, without being asked, have spread the word, acquired sponsors and donated their personal time and resources to helping my boy.  These good people feed my soul.  Good people like our long-time family friend, Rick Tuckett, with West Coast Engraving.  I got a phone call earlier this week from my Dad letting me know that Rick had generously offered to pay for ALL the shirts for this event. All of them. He has donated his time, designed the graphics, and put up with my compulsive need for control.  And, now...he is doing all that for FREE.

Amazing. He does fantastic work, all of our signs, medals, and shirts have been designed and ordered through this awesome company.

Our friends, whose daughters cheer with Abby and my sister Maddi, have also been amazing. Diane, on her own time, found a sponsor (Ken Garff West Valley Chrysler Jeep Dodge) to pay for the entire Viewmont High Cheerleading Team (18+) to participate.  This is worth several hundred dollars. 

Unbelievable.

As I sat in the car, driving to pick Deak up from preschool today I let myself feel how amazing this thing I call "hope" is; the infinite power it holds.  I felt the sun finally shining through my windshield, and held back my joyful tears.  I consciously thought, "Man, I am so glad I am choosing happiness today."

 My hope sits in the back of my car and leaves blond little curly cues all over the black fabric on his carseat. Your hope may be found elsewhere. 

Where ever it is, give yourself a second to feel it today...it's worth it.

*Candid shot taken during Deak's 18 month old photo shoot.*

(I kinda wish my skin still looked like that...;)
Reminder: Registration Fees increase after this weekend...click here to register now.

Perspective.

We've had a rough weekend

A very unexpected flooding incident inside our home was definitely not the most welcome kind of news.

Crisis tends to follow our little family around, lingering on our foot-tails and entering at the most inopportune moments.

But, we have learned to handle crisis and look at situations with the proper perspective; thanks to Deak.

After the initial news and ensuing anger and sadness, my husband and I gathered ourselves together and quietly understood that although this is a stressor, it is not important, and we will be okay.  I think we even laughed:)

My thoughts kept turning to Deak...all night as we waited for disaster clean up to arrive and help us clean our mess. I needed him. When we returned home, I got him out of his crib and held him close to my chest as he held on tightly in return.

One hug, and I was okay. 

Perspective through Deak's eyes is an undeniable blessing. I often want to say to people who are hurting, "Please. Come over. Spend a few minutes with my boy, I promise it will help."

How lucky am I to get that every day?

Less than two weeks until race day.  Unbelievable.  I know I overly state this, but I am so immensely grateful for the support and love.  Your generosity and Deak's hugs have carried me through a tough couple of days.  I am so excited to see you all there, and so overwhelmed with emotion.  If you haven't, register quickly, as the fee increases to $35 after May 7th.

Click here for a direct link to the online system.

And, remember to stop by and give Deak a hug May 14th...I promise, it will heal you too.

*Picture taken the first night he crawled...it still makes me cry:)

Media

So immensely grateful for writer Natalie Draney and her article she wrote for the Salt Lake Tribune about our Run for Hope. It turned out beautifully, and I am so excited for the possibilities this brings to our little event.  Hooray for Good People!

Click here to read the online version of the article.

And, register today!  We are counting the days (less than three weeks)...

Winner, Winner.

Each participant, walkers, runners or hoppers (that would be Deak) on race day, will receive a "Raffle Ticket" tear off on the bottom of their bib. 

This is super important.

Important, because we have a couple awesome prizes.

Thanks to a very generous donor and great friend to my dad, Chris Conabee with Paladin Partners, we are able to give two very lucky raffle winners Summer Weekend (Friday, Saturday, Sunday) stays at the amazing Silver Star Condos and Resort in Park City. 

I've been able to stay there a couple of times with my family, and it is fabulous. It is my 8 year old daughter's favorite place in the world.

*Pictures taken during our weekend at Silver Star this past Fall.  We don't look happy at all, do we?*

Good luck!

By the way, three weeks? How did this race get here so fast?  I am so excited, and cannot believe the amount of love we are receiving.  My goal of 200 participants, which I originally thought to be quite lofty, is in our clear future.  Spread the word, encourage friends, and get up a little early on a Saturday morning giving of yourself for others. 

We are so excited to see you!

Dreams.

We all have dreams.

The moment the pregnancy test reads "positive," visions of the child we are carrying begin permeating our thoughts and making their way into our hearts.

We fall in love with this little peanut we cannot feel long before our belly shows signs of new life.

It was not different with Deak.

I had dreams.

Dreams of a little blond haired boy playing shortstop (because I never could) and catching touchdown passes. I felt the emotions; how it might feel to sit in the bleachers and proudly exclaim, "That's MY boy."

I learned to modify my dreams, but that process was not easy.

When we were told Deakon would not live, the pain that I endured is nearly incomprehensible to recall. It penetrated my heart so deeply, that I did not know if I could recover.

But, I did recover, and I allowed hope to prevail.

I learned that hope was a choice.

And, I choose to create a world of opportunity for my son.

Deak is working really hard on balance while standing unassisted at physical therapy.  He is doing amazing.  Yesterday, Lisa (Deak's wonderful therapist), in an effort to encourage balance, retrieved a plastic tee, bat and ball.  She was a little unsure as to whether or not Deak would enjoy the activity.

He loved it. 
Every single second. In fact, when the game ended, he crawled over to the ball across the room, brought it back to the tee, tried to place it on top, and grabbed the bat again.

My heart stood still.

Although my dreams have been twisted and turned around a bit, I have grown to understand that they are real, and they are possible.  Watching my Deak hit a ball, something that 4 and 5 year old boys do daily this time of year, is not something I take for granted.

It is a dream that the world attempted to take away from me.

A dream fulfilled.

Let this boy touch your life.

Register today to walk and run with us May 14, 2011.

Details above:)

I like easy.

Awesome news.

We have now created an online contribution option for "Spirit Runners" via runnercard and the same site used to register "Live Runners."

Click on this link here, or check out our Spirit Runner Tab above, and register today. 

So far, our Spirit Runners have made a strong showing; it has been amazing. I have a feeling we all may have a little extra "push" from some amazing spirited friends as we walk and run together on May 14th.

Literally, 3 minutes of your time and a few bucks can help save the life of another sweetheart like my Deak.

No printing, mailing or stamping.

What an easy way to make a difference.

Happiest Place on Earth.

That's where we just returned from, and my Deak loved it.

His Favorites:  Buzz Lightyear, Nemo Submarine and the Disney Junior Show.
My Favorite: This happy face.

My not so favorite:  An emergency hospital visit for an unexpected and severe corneal abrasion for Deak's left eye.  (He is recovering and hopefully will be back to himself soon). I am thankful for good doctors at good Children's Hospitals, even out of state.

Less than five weeks!

Ah!!

I am feeling the stress, and keep having a recurring nightmare that race day comes and either I oversleep or no one comes.  To say that I am anxious, would be an understatement:)  But, knowing how much support I have already felt and have, I have a feeling my "happiest place on earth" will come the morning of May 14th.

Register today!

T-shirt designs are being finalized as I type, and I will be placing orders soon.

Via Mail, or Online (*Links Above*)

Hope you all had a wonderful "break."

Love,

Jenny

Six Weeks.

Wow.

Six Weeks.

May 14th will be here before I can even blink my eyes.

So much to do, so much to hope for.

We've been reminded in our house recently just how desperately important funding for research is to the life of our sweet Deak.

He is okay, but has had a couple of health setbacks recently. 

As I mentioned on my family blog, there is nothing like the possibility of neurosurgery to help get one's priorities immediately put into check.

We don't know details yet, but are hopeful that if the decision is made that Deakon will need surgery, the surgery will help his legs gain the strength they need to walk on their own.

We have hope those cute little legs will.

In fact, I'd say we know they will.

And, you can help.

Please join us with your healthy legs May 14th.  Registration is open via mail or online, and register early to guarantee t-shirt preference.

(Deak minus curls, thinking his big sister Abby is pretty funny.)

Spread the Love

I've had lots of very kind people offer to help me with any aspect of this race, and I am positive I could not have made it this far without them.

If you are local, and have a couple of seconds to give, I have created a pdf flier that can be posted anywhere!

Offices, grocery stores, gyms, athletic stores...where ever your heart desires:)

I'm getting close to crunch registration time (April), so I would love and appreciate any help you are willing to give in this area. The link is always noted above in case this post gets lost in translation, but just in case I will post a link here.

Thank you, Thank you, Thank you for your help and support!

Love,

Jenny

Hope.

Do you have it?

He does...

*Shirt courtesy of HopeKids*

He also really likes the camera.

I opened up a couple accounts and deposited a handful of checks into a growing pot of hope yesterday.
With each push forward, the joy builds and builds.
Register today online by mail, or join us as a Spirit Runner.
Help us give away some hope to all kids like my Deak.

Good.

I am a psychologist by profession, and inadvertently by heart.

But, I am kind of unique.

Most psychologists believe strongly that a change of behavior is the predecessor to change; that once a behavior is managed, intrinsic motivation will be discovered.  In fact, most will fight tooth and nail defending this belief system.

Not me.

I believe the heart is the predecessor to change; establishing a relationship, validating feelings and providing encouragement are essential components for hope.  I believe it's hard to find the drive to change without first recognizing that one's heart also needs a strong investment of time and energy.

I'm a humanist - the last of a dying breed.

I just can't help it...

  Without fail, humankind continually shows me that when given an opportunity, its' innate nature of goodness is exposed.

This race is no exception.

I have been floored by the outpouring of love.

Good friends have offered sponsorships (Thank you Sahara Cares)...

Friends and family from out of state have continued to enter as spirit runners...

Friends I have not seen, some since Junior High, have committed to running...

Friends at work are organizing and collecting funds...

Perfect strangers have emailed me and offered their expertise on a volunteer basis...

And, the list goes on...and on...

People are good.

They just are.

And, those hearts of ours are capable of doing so much good.

Sometimes they just need to be reminded.

Thank you for sharing your hearts with me and my family.

Push.

There have been times, especially lately, when I feel as if I've been pushed to my limits in all areas. I often find myself wondering, "When is this hard stuff going to end?"

But, I'm lucky.

Lucky because I get to live with a really jumpy, curly, blond haired, blue eyed, bright as a headlight ray of hope.

I look at the scratches on his feet, torn up from braces and practicing climbing.

I look at his toes and the funky way the middle one sticks in the back, like it's hiding something.

I feel his anticipation and excitement when he attempts to communicate something and the person with whom he is communicating with understands.

Deak pushes, and pushes, and pushes.

Just to get through each day.

He pushes me to persevere.

And, for that reason I am going to push you, sometimes gently and sometimes with a little more torque.

Push you to register for our run and provide an opportunity for Deak's message of hope to be spread to others.

Although my major marketing onslaught will begin in a few weeks, I've already received registration forms from people whom I've not even met, and that fills my heart with so much joy.

Let Deak inspire you to push yourself just a little bit harder than usual on Saturday, May 14th. 

8:00 am.

Register online, or by mail as soon as you can to ensure proper t-shirt size or delivery (details on sidebar).

Deak, age 3, with two other children who have Ring 18 in Las Vegas at a Chromosome 18 Registry and Research Society Conference.

 Deak and an adult living with Ring 18. She is amazingly independant, has even lived on her own.

 Deak and Emarie in Vegas.  Emarie has 18q-, which is similar to Ring 18.

Deak, age 2, and our angel Em in San Antonio at the Chromosome 18 Conference. 

Kindred souls, worthy of your donations, prayers, and the push to run for hope.

Are you inspired yet?

Mail

I get so excited every single day to find new registration forms in my mailbox, it instantly will turn whatever type of moment I am having to joy.

Although the race is actually three months away, that time will sneak up (especially for me) very quickly.

Register as early as you can to ensure your preference for t-shirt size, because our race shirts are totally going to rock.

(Hint - they are going to be red.)

Thank you for all the support and love!  Deak's Race for Hope is quickly becoming more than I ever dreamed possible...and that is thanks to you.

Love,

Jenny

PS:  Spirit Runners - I will be sending your t-shirts to you as soon as they are made, most likely in March.  I will make sure they arrive ahead of time, so your heart and shirt can join us on May 14th.

I love me some good news...especially free good news.

The city proposal went well, to say the least.  Admittedly, it most likely had nearly nothing to do with me and a whole LOT to do with Deak and his story.
Our city has agreed to participate in advertising (for free).  Which means, if you live in the city where our race is going to take place...be prepared for bombardment in the coming months.  School fliers, city marque, city electronic sign (DATC), Utility bills, website, and the city newsletter.
Wow!
I am ecstatic, and full of hope.
Hooray for good people and kind hearts!

Proposal

I'm meeting with the city the race is to take place in tomorrow, in an attempt to gain support and advertising.  They asked, among other things, that I include a written proposal.

So, I re-formatted a few lines and am including a post I wrote last year while asking for fundraising money for our beloved charity. 

So, in case you are wondering why I am so passionate, why I am so persistent, and why am I committing more time and money than I have to give?

This is why.

  “Profoundly Retarded”

     Those were the words that would resonate after the cold and blizzard-like February morning my life forever changed. No words of comfort were given; no meaningful gestures or signs of hope, just cold-hearted terms and grim medical statistics.
My husband and I were strongly encouraged to terminate the life of our baby boy – our boy. We were told his life was going to end regardless and would have no quality even if he made it to term. In fact, we were lead to believe his life would be a disservice to humanity and to our families’ lives.
     You don’t prepare for something like this. You can’t. I did not sign up on a roster sheet and volunteer to have my heart torn to shreds. Albeit, life happens, and we get to make choices; choices that ultimately determine our consequences, and choices that allow us to learn, grow and experience worlds we were not aware existed.
Blair and I made a choice in that moment; a decision of our hearts. We knew without a doubt that this boy was ours, and we prayed that we would be able to hold his body and kiss his cheeks. We didn’t care about his nose, or cute little funky toes…we just wanted to be given the opportunity to love him.
     During the months that followed, test results were given and we discovered Deakon had an extremely rare Chromosomal abnormality, simply titled Ring 18.  Basically, the second chromosome in his 18th pair had broken at the ends and formed itself in the shape of a circle. Needless to say, hours upon hours were spent on the Internet; reaching for any beacon of hope I could find. During my search, I stumbled across the website www.chromosome18.org, and read the following mission statement:

Our mission is to help individuals with chromosome 18 abnormalities overcome the obstacles they face so they might lead happy, healthy and  productive lives.
     I don’t remember exactly, but I am nearly positive I cried. What a difference this statement was in comparison to the words the specialists were choosing to use. Through this website and its’ resources, I was able to connect with families who had children with Ring 18  and other chromosome 18 abnormalities. Pieces of my heart began returning, and hope was beginning to be restored.
     Deakon is now nearly five…FIVE years old. He is beautiful and happy and sweet natured. He freely gives kisses and whispers, “Mama, I la ya (I love you.)” In fact, rare a morning goes by without me hearing it. Deak loves music, especially the Black Eyed Peas, and lives for his favorite TV show, Yo Gabba Gabba. He crawls around, creates mischief for his amazing big sister, Abby, and walks like he has something to prove in his awesome green walker.  In fact, his physical therapist says it is only a matter of months before he is walking on his own.
    
     Deakon’s life is anything but a disservice to our family, and Deak is anything but retarded.  He is an example of who I wish I could become.
     Although Blair and I had made a choice, I am forever indebted to the Chromosome 18 Registry and Research Society for the restoration of Hope that was given to my broken heart. I am so grateful for the positive attitudes and assertive drive that began medical and genetic research twenty years ago. Medical research in an area that is considered non-commercial and unprofitable; Research through which my son was advised to begin medical growth hormone treatment that has drastically improved his life.  The connections I have made with families, through the aid of the registry have been life and sanity saving. They are family…sealed with a Chromosome 18 gift.

     That is why I am choosing to raise funds for this charity, and for my son.  Without the families of the affected children fundraising, we would have nothing.

     I would deeply appreciate any support in advertising the city would be willing to give us.  This is the first of what I hope to be an annual event, each weekend closest to my son’s birth.  There truly is no better way to celebrate his day, than by providing hope to others.

     
     We are so excited to spread awareness and earn funds for a cause that is clearly so dear to our hearts, and appreciate the opportunity the city is giving us to do so.

Thank you,

Jenny Howe and Family

Online Registration is Now Available!

Hooray!

Online Registration is now available and easy, and heaven knows I like easy things.

The link is always listed to the right in the sidebar under "Details," but I will also post the link HERE.

Thanks for all the support; I was in tears this morning as I saw how many of you have linked this site to your facebook pages and blogs.  Nothing like a little love to help my day instantly get better.

Love,

Jenny

Spirit Runners.

I've had many of my far away friends mention to me that they'd love to help and run this race...if only they were near (and believe me, I wish they were near...but, those are for my own selfish reasons:).

Based on their ideas, I've come up with the idea of having "Spirit Runners." 

These amazing and generous people who would run if they could, can now be with us if only in spirit.

If you would like to join us for this race and participate from afar, we would love it.

I'll even send you a t-shirt :)

Just click on the link to the right of the screen, print off a mail-in registration form, and write "Spirit Runner" next to your name. Send your donation/registration form to the listed address, maybe adding a couple extra bucks for shipping...and it shall be done.

Your presence will be felt, and your spirit love will mean more than you know.

Love,

Jenny

The Beginning.

I am so excited.

So excited for the opportunity to share Deak's vision of Hope with others while raising funds which will be devoted to research for Ring 18.

He deserves it, and you deserve to be a part of it.

For those who don't know, Deakon was born with an extremely rare chromosomal abnormality, Ring 18.  Essentially the second strand of DNA on his 18th pair is missing some pieces and has formed the shape of a ring.

We were told by several medical professionals that Deak would not live to term, and if he did he would have no quality of life and be "profoundly retarded."

We chose not to give up hope, and Deak has been defying the odds since birth.

Deakon is now 4 and the race will take place the weekend of his 5th birthday.

He will be five, and that is nothing short of miraculous.

We chose to organize and direct a race at this time as Deakon is now on his way to becoming an independent walker. He is strong and tough and taking his first steps along furniture. His physical therapist believes it is only a matter of months before he is off and running.

I believe with my whole heart she is right.

Please, join us. Use your healthy legs this May 14th morning to help provide hope to those who have to work very hard to have that ability.  All (every single penny) will be used to fund genetic and medical research for these beautiful people affected with a Chromosome 18 abnormality, and most specifically Ring 18.  We are hoping to find sponsors that will help cover all costs of directing/putting on the race, which will allow for all funds to be distributed directly to our cause.

If you, or anybody you know is interested in becoming a sponsor, please leave a comment or contact me at jehowe3@gmail.com.

Let Deak inspire you, I promise you won't regret it.

With love,

Jenny Howe

(Proud mama and Race Director)