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.

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.

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.

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? :)

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.

Ten Toes

*Re-print from my personal blog. Written July 2011

Ten Toes.

"He is missing some toes."

For some reason, during the midst of learning our son, whom we had grown to deeply love at 22 weeks gestation, was at best going to struggle with significant health issues throughout his then determined short life...that one sentence resonated and stomped on the pieces of my freshly broken heart.

Ten fingers. Ten toes.

Something most doctors quickly celebrate and joyfully proclaim to the beaming father and teary-eyed mother upon first meeting their precious, newly-birthed baby.

I was cautiously joyful upon Deakon's arrival.  I believe a mother can only hear "Your child is not going to live" a couple of times before trauma sets in. As the doctor and his partner were preparing to deliver Deakon, via c-section, I heard my doctor whisper to the other, "She is preparing to have a handicapped child."

Wow, I thought my heart was broken before.

Deakon was blue when he was born.  He didn't cry quickly like other babies.

I didn't get to even touch him.

The nurse whisked him away to be prodded and poked and hooked up to tubes, and my heart stood still.

As she came back into the room, and while the doctors were fixing what they discovered to be a pretty severely damaged uterus (thank you placenta previa), I became fixated on one thing...his toes.

"Did you count his toes? How many does he have?"

Why didn't anyone tell me this? Isn't that what they do?

The nurse, sensing my panic, (as irrational as it must have seemed considering I wasn't even certain Deak was breathing), ran out of the room promising me she would go count and let me know.

Within minutes, she replied, "He has ten toes. Ten. A couple of 'em are just kinda hiding in the back."

Even as I write this, I feel the warm rush of relief run through my veins.

I knew it.

He was going to be okay.

I was not able to see Deakon until my doctor saw me back inside my hospital room and realized no one had taken me to the NICU.  He barged in there, pushing my bed and told the nurses I needed to see my son.

I did need to see my son.

I took one look at him, very much oblivious to the monitors beeping and tubes through his nose and IV taped down to his skull, and felt joy.

"He looks like me," I said aloud.

I noticed others' eyes in the room turn downwards in pity, clearly seeing the differences in his nose structure, noticing the eyes a little more widely set and thin, flat eyelids.

Not me.
I saw the ridge of his forehead and his face shaped more oval than Abby's.  I saw his blue eyes and blond, blond hair.

I did not see DNA splattered with Ring Chromosomes.

I saw me.

He was mine.

He had made it, and I loved him with my entire soul.

Today I was feeling really sorry for myself.

And actually, yesterday too.

I think I have too much time for thinking on my hands; and me and thinking time are not friends.

Plus, I haven't been sleeping.

I just can't.

I sat next to Deak and his mattress island of fun, while feeding him some corn dogs and thought to myself, "I'd really love to have normal problems - like what to make for dinner, or making time to go to the gym."

Not that I don't have those problems, because I absolutely do, I am just craving normal.

Normal. Normal. Normal.

I think my heart is running on fumes.

Then, I saw these.

My boy's perfect toes.

All of them.

I love the way they stick together and push the one out in the middle.

I saw them and I remembered.

I remembered the sharpness of the pain that I felt at the thought of never having the opportunity to kiss those little feet.

And, everything became better.

How could I allow myself to wallow, while my Deak has been the one who has endured?
He has handled this life with happiness and gratitude. 

Gratitude to just be him, and to just be here.

I feel like I constantly have to learn this lesson of acceptance, and on dark days, it can still ride a low tide.
But, not anymore today.

How grateful I am, to get to live with this boy whose patience re-teaches me over and over and over again.

I am grateful for those ten toes and the spirit of truth that has come with them.

 I am grateful for a Lord who believes I have the strength to watch those toes grow old.

*I do this race because of days like this.

Days where the clarity flows and gratitude prevails.

Register Today, if even in "Spirit" and join us in helping to secure more days of hope for those living with Chromosome 18 abnormalities.

Just a couple of seconds and a few computer clicks really can help.

Love,

Jenny

Emotion.

I thought that this year, I'd be able to direct this race without the onslaught of emotions I felt last year.
I was wrong.
Every single email I receive and every single letter I open, fills my heart with so much joy.  Each one represents an amount of time spent thinking about my son. How could I not be overwhelmed with emotion?  I am so grateful for every encouraging thought sent in the direction of my Deak.
We feel them all.
So, while I'd like to pretend at times this is a business endeavor, created to raise funds for our son's condition.
It just isn't.
This little 5k is full of heartache, and joy, and love and hope.

Thank you for giving me the chance to feel all those things. 
My life is so much richer because of you.

Hope.

Something I've learned, albeit not well, along this journey of parenting my Deak, is regardless of the battles we've won, this Ring Chromosome that he was given still likes to jump out and prove it's around when we least expect it.

Last Thursday, I sat with my boy who was wearing no pants (don't ask, it had been a long morning), waiting to meet with our Orthopedic Surgeon for our yearly routine check-up.  This same routine check-up last year lead Deak to a neuro-surgery on his spine and a traumatic mistake during the anesthesia administration that nearly left us without a son.  So, I guess when I mention routine in Deak's world, it should be qualified with a disclaimer explaining that our version of routine probably isn't so much yours.  Nevertheless, 6 packs of fruit snacks, a package of candy, 25 stories and two hours later, I was again met with the following statement...

"Mrs. Howe, things don't look good."

You'd think I would be used to it, but I'm not.  My heart breaks every single time.

This time, it is Deak's hips. They have shown a marked decline over the past year, and Deak's hips are now functioning at over 50% outside of the socket.  They need to be replaced and fixed, and this requires my extremely active and mobile Deak to get new hardware inside his body and wear a cast from his chest down for approximately six weeks.

Six. Weeks.
This time I just don't know if I can do it.

I know I am not the first parent who has endured this type of thing, or even this type of surgery with their child.  It's not even my first surgery with Deak.

It just does not get easier to watch your baby in pain; it just never will for me.

I've selfishly indulged myself in tearful drives the past few days.  I've projected my anger onto the doctor, my husband and my kids.  I have asked "Why," felt defeated, powerless and alone. In fact, I've consciously thought, "This one is going to push me over. I can't do any more. I can't."

Then, something happened yesterday as I left an especially emotional physical therapy session with my son. I got an email alerting me of two new registered runners for our little race; a father and his son, also with Ring 18.

I read the simple email, and I cried.

I remembered that I wasn't alone.
I remembered that there have been times when I've been able to show strength beyond my capability, and stand by my son's side as he endured more than any child should.
I remembered that I do have power, and that I can do my best to help change things for future families traveling our same road.

I remembered that although I will not always feel appreciative of the "why," I understand that my son's life has purpose.  Through this understanding, I have hope that one day the "why" will become clear, and his patient suffering will have meaning.

I have hope.
Some days it blows loosely in the air like the wisps of fine baby hair.
But, some days it is so overpowering, that I feel I have been given a gift so amazing I need to stand tall and scream, "Hey guys! I get it. Spend some time with my kid...You can get it too."

I need this run.  I am proud of the money it has earned and the lives Deak has inspired.
But, I need it.


I need to have hope.

Come let me scream it in your face on May 12th :)
Register today.

Close.

Man, he is almost there.
My cute little dude doing his Frankenstein walk...
He'd love to show you in person.
(And, I'd love to show him off for you...)
Register to run with us May 12, 2012

Again.

(Written November 2011)

I wasn't sure Deak was 100% today, he wasn't terrible, but just kinda seemed a little off.
I cruised in the door from work, snagged he and Abby and began the trek to Shriner's for our biweekly physical therapy appointment.
I walked inside Shriner's carrying my 40 lb little big dude, because I did not have time to think about putting the stroller inside the car, and made it a mere five minutes late. Which is pretty much considered "on time" in my world's clock.
Mark, Deak's therapist, set up an awesome game with a real bowling ball and pins to encourage Deak to stand up from a sitting position and move his body forward, stepping if necessary.
Deak was a butt head.
He screamed bloody murder for the first 15 minutes, the only exception being each time the ball hit the pins and made a crashing sound.
Deak's therapist and I questioned his health and wondered if he just wasn't going to be into tonight.
It totally sucks when Deak isn't "into" it because it is such an investment of time and energy just getting there.
I was ready to be done.
I know I've done it a million times, but I don't care what kind of steel your awesome mom suit is made of, a screaming child can only happen for so long before your heart just hurts.
Deak's therapist said, "Let's just try one more thing."
I reluctantly agreed, already having moved closer to Deak in an attempt to pick him up and carry him home.

Something changed.
Maybe the new toy, maybe Deak's choice to give in rather than fight...
Whatever the reason was, he decided to cooperate.

Deak sat in his little red plastic chair, stood up and grabbed the table to stabilize himself in order to play with the toy the therapist had placed just outside of his reach.
He made it easy at first...
and then gradually pushed the chair back....

Deak is no dummy; He'd instantly recognize when the chair was placed to the point where his arm span could not reach the table without movement forward.
Then, he'd whine about it.
And then he'd turn his little head towards my direction and his eyes would look at me and say, "Really mom? Really? You're going to make me do this crap myself?"
Mostly, he gave up.

But, then....he didn't.

He stood up, quickly stepped forward with his right foot, and then grasped onto the table as if he was holding on for dear life.

One little tiny step.

One little tiny step that I was told he would never take.

One little tiny step that stole my heart and stirred my soul.

I turned to the therapist and said with welling tears, "He did it. He took a step. That was his very first one."

The therapist's smile may have been bigger than mine.

I am realistic about this step. I understand it will take time for this little beginning to become a big ending.

But this ride...this ride of hope that this boy has brought me on...is worth every single second.

My boy can walk.

He.can.walk.

(The first time I saw him)

From this...

...to this.

We are doing it again, and we are so excited.

We hope you will join us May 12th for a morning of filled with the kind of hope only this little dude has to give.