Thank Heaven for iPhones.

Or, my life would not be documented.
The handheld video/camera/phone/calendar invention has changed my life!
So, here's life since about March...

Deak's Run for Hope 2012

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.

Deak's Run

It is coming up so quickly...crazy how time flies when you are insanely busy.

If you would like to participate in Deak's Run for Hope 2012, see our run website and register today.

Prices increase to $35 in 7 days.

See you all there!

Click here to register today!

Shop.

When I'm stressed, I like to shop.

Or, pretty much, I like to shop.

There is just something about something "new" that cures the worst of days.

Problem is, my budget doesn't so much like to shop.

(and the hubby doesn't really endorse this shopping while stressed thing with flying colors)

So, although stressful doesn't seem seem an adequate enough descriptor of my life at the moment...

I won't buy these things.

But...I really, really want to.

Come.On.

They're only $495.00.

3 Weeks.

Crunch time is officially beginning.
Deak's Run for Hope is only 3 weeks away.
Join us, May 12th for a morning you won't soon forget.
All proceeds benefiting the Chromosome 18 Registry and Research Foundation.
See www.deaksrunforhope.blogspot.com for details about registration.
Prices go up to $35 on May 10th.

Abby's Cheer 2012 via my iPhone

I am so proud of my girl this year. She worked really hard and pushed herself more than most 9 year olds would. She loves, loves, loves cheering and I am happy I get to watch her excel at something she enjoys so much.

Milestones.

From the second a child is born, a mother instinctively believes that the beautiful goodness placed inside her arms is the most perfect being to have ever graced the earth.
It is a good thing.
That overwhelming love protects, not only the child, but the mother.   Because, really, newborns are not easy.
Almost immediately, and especially with the first-born, we compare.  We research and read and dissect the pamphlets given to us by our pediatrician. 
When should my baby hold my gaze?
Reach up their arms?
Roll over?

We feel proud when they appear to have exceeded developmental expectations, and though we may not admit it...we worry when they don't.  We search for some external validation via checklists that will fuel our most divine desire to be a good mother, and somehow tell us, "Hey. You are doing a good job at this being a mom gig."

We (mothers) count them.
The milestones.

I tried this for a little while with Deak.  When that inevitably failed, I then attempted to compare his milestones with those few who are born with the same chromosomal abnormality.  Many years and few circles of acceptance later, I've mostly stopped.  The external validation for a "job well done" does not run rampant for moms of special needs kiddos.   I had to learn to accept that milestones may become "inchstones." This is not easy; it's painful.  Excruciatingly painful.  But, eventually you get there because you need to emotionally survive.

My boy has hit a milestone.
He has patiently inched his way along his own little cautious path, and reached a place, that admittedly I was learning to accept may not be a possibility for him in this life.

Last night, he walked.
Not just a step.
He walked.
He looked so cute. 
Six years.
Six.years.of.inchstones....and now, he can walk.

He walked back and forth for an hour at therapy; making it several feet before stopping himself.  It will take him a few more inchstones before he is walking around Target.
But, he is ready.

Our last physical therapy session, three weeks ago, was pretty disheartening.  I had just found out about the new hip surgery and the implications for progress that entailed.  Deak's therapist, Mark, was respectful enough to kindly guide an appropriate discussion of realistic expectations. My heart left broken.

Last night I mentioned to Mark that he had stood in our family room and had taken two steps towards me unprompted.  I had seen this a positive sign, but was cautiously hopeful.  My heart can only take so much...

Mark and I chatted, and then, Mark just let him go...and Deak walked away from him to his toy on a nearby bench.

"What? I didn't expect that!! Let me get my video camera!!"

Mark was beaming.

I was beaming. 

And like any proud mama witnessing a milestone, I took 700 videos.
Hundreds of physical therapy sessions in my boy's little tiny life had suddenly been so worth it.
External validation had found it's way inside my analytic brain, and it felt amazing.

Mark said he'd like to attribute Deak's new found fearlessness to acquired ability level. 

"He has made significant progress in the past three weeks.  He is ready."

Those unexpected miracles.
Actual, real miracles.
I get to live them.
They are the best kind of happy I know.

A day later, I am still beaming.
And, I am now watching his 700 walking videos over and over and over again.
Crap has happened at work, and I have been able to just smile it off. I drove to grab a Subway sandwich, remembered the feeling I felt last night and cried happy tears through the drive-thru.

This boy does this; creates a depth of feeling most do not get to experience.
He is joy.
He is my joy.
My heart could not be any more full.
How grateful I am to be his mother.