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.