Unexpected Plans.

I really, really, really like things to be planned, and organized and then perfectly executed.

It makes me feel safe and calm and at peace; much like the way coming home from work and cleaning the kitchen or throwing in a load of laundry prepares my mental state for the evening.

Neurotic, maybe.

But, it's always been me.

Ha.

To say the least, I've had a little dose of life, mostly appearing in the form of a couple of cute little blue eyed babies. This, among other things, awakened me to the realization that as much as I really, really, really like control, it is never, ever, ever in a bazillion years going to be my reality.

Like ever.

The funny thing about life is that, "always" in reference to our comfort zone, is a recipe for disaster. It's like wearing a sign on your back asking the big guy to test out that "always" thing and see if you can handle a little change. 

"Come Get Me," it reads in bold print, "Things are really comfortable for me right now, and I could use a little zinger to the thigh." 

This change often comes in ways we may not always welcome or understand, sometimes for years, but it is change that in hindsight always shares volumes of wisdom.

Unexpected plans, and how we choose to handle them, ultimately define who we will become.

These past few weeks have allowed me several moments of reflection on these moments of defining change in my life.  As evident through this blog, I have had many, many days where I've questioned my sanity, let alone a purpose in the pain I or my family was experiencing.  But, it's as if this week I've had that magic "light bulb" turned on inside my being, and I've finally recognized that the clarity this "light bulb" brings does not come from me. 

It comes from something much brighter.

I've had conversations with my husband this week, where we have dissected nearly each "changing" experience we've encountered these eleven years together.  All of them, every single one, has played a role in every moment of joy we are experiencing today.  I can say with certainty, that I know we are where we are destined to be.  Is it optimal?  No.  Is it uncomfortable at times?  Absolutely. 

But, it is the definition of us.

And, surprise, surprise...I'm not the one in control. 

There is a plan and a purpose to each change we encounter in our life.  Choosing to withdraw your personal army of defense mechanisms is not easy.  It requires trust and an acceptance that we may not always have all the answers exactly when we want them.

But, I promise, the answers do come.

And, when they do, the peace that they accompany, beats a sparkling granite countertop any day.

Decisions Suck Today.

I usually rock at making decisions.
(I can only say that because there are countless things in life that I absolutely suck at, and I gotta count my strengths in the tiny places I find them.)
I just kinda know what I like, know what needs to happen, and then get it done.

Deak, in true form, has decided to shake things up a bit in this arena, and for once in my life, I sincerely do not know which direction to take.

I don't think it's fair that I have to decide if my son is ready for neurosurgery.  I don't think any parent should have to make that decision.  I did not, again, read the fine print on my life plan which stated that making a choice that could potentially determine whether my little boy, whom I love more than my life, would independently walk or toilet train, was going to rest completely on my and my husband's shoulders.

I really, really suck at reading fine print.

Deak saw the Neuro-Surgeon yesterday for the first time and was diagnosed with Tethered Cord Syndrome.  Essentially the spinal cord extends lower into his back, than others' and the nerves are kind of bunched and stuck together.  The symptoms include, among other things, bowel/bladder control issues and lower extremity weakness/numbness and often times back pain.  The problem with sweet kids like my Deak and diagnosis's like this, is that we have no way to really interpret, due to Deak's lack of expressive communication, whether or not he is experiencing numbness and pain.  It is completely a guessing game.  There are a few "red flags" of which Deak has little, but really, science is tricky in this area.  The neuro has ordered another test, that he referred to more than once as being "not pleasant" for Deak (a uro-dynamic study), and that should give us another "clue."  But, the neuro-surgeon honestly said "Listen to your instincts on this one.  I am happy to do surgery, or wait and do surgery.  It's your choice."

Lame. Lame. Lame.

I don't want my baby to be put through spinal cord surgery. I don't want to watch him attempt to lie flat on his back for 48 hours (not going to happen).  I don't want him to hurt and be sad and have to worry about his stats and lungs and all the other stuff that comes along with worrying about my Deak. 

But, I want Deak to walk.  I want him to toilet train. I want him to learn to rely on himself and develop the self-respect that comes along with doing so.  I want him to be happy.

There are no guarantees that this surgery will help, although all the parents I've spoken with (love, love, love my C18 friends), have said they've seen tremendous progress in motor skills afterwards.  Considering how close Deak is to walking on his own, I'd hate to not give him every opportunity I absolutely can.

But, I don't want to.

See? I can't make a decision.
I'm sure I will eventually, and I'm sure it will be okay and I will be okay.
But, for now, I am going to cry in my car alone and stress and worry.
Because, that's what I do.

Top Ten.

There are a few moments that I consider when thinking about my "Top Ten" moments in life.  The births of my babies, my first date with my future husband, and Abby's recent Festival of Trees creation in honor of her brother. 

This day, May 14th 2011, will go down in my little personal history, as one of those moments.  Those moments that seem to clarify and project exactly the reason one has for living.

It was amazing.  I'm not sure I've ever felt as supported and loved as I did in those moments.  Family and friends just stepped up and helped.  My dad drove around half the state hunting down red t-shirts, my mom helped and pretty much put together over 200 race packets, my sister Nikki took over 200 pictures to help document the day, and my in-laws helped register and time race participants. Family friends sponsored large amounts of money to help cover the costs of the t-shirts and medals (West Coast Engraving and Benson's Trophies).  My amazing neighbors and church group showed up at 6:45 on a Saturday morning just to help me.  I had friends, some of whom I've known for over 20 years, plan together to come support me.  I had friends from work past (Holla Youth Corrections) and friends from work present.  I literally had people drive and fly hours to be with my family.  I've even had strangers send me emails about how wonderful the "feeling" they experienced that morning was, and how they are excited to support us year after year after year.  To put it simply, I have been floored at the outpouring of love.  Absolutely floored.  I have amazing people in my life. Amazing.

A few highlights (like I said, I have 200 pictures:)...

My Burg...known her 20 years.

My Mom and Dad

Abby, amazing and comfortable with her "Big Sister Supporter Role" like always.

Cousins, waiting for the action.

I am happy despite having 13 chins in this picture.

I love this picture:)

The Sea of Red

Awesome Friends.

Friends all the way from Junior High and High School.

A, Ash and John

Deak signing "Thank you" to the crowd.

Loving that the mass of over 200 just sang "Happy Birthday" to him.

Chilling and watching the runners...

Doing their own "finish line" walk.

Deak loved clapping for the runners as they crossed the line.  Many people stopped share some love with him.

Deak and his Indie (bff from school), she loves to kiss him.

Cori was instrumental to this day...so extremely helpful, all on her own accord.  We love her.

Me and Nik

Mad and Deak

Kel and Deak

The Peter's Family drove from Provo to support us, we loved having Em and her family there.

Marilyn and Craig (Blair's Parents).

For more details about the day, including a video, click here.

As mentioned on our Run for Hope blog, I am forever changed by this day.  So happy that my boy gets to share his life with me; watching him impact others the way he does is a daily dose of needed inspiration in my life.

I am so blessed.

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*

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.
Click here for details and to register now.

Abby.

This morning while getting ready for the day, Abby asked me to do her hair, "like mine."

Maybe this is commonplace in your homes, but in mine, it most definitely is not.  There are not many things Abby likes to do like anyone (except Maddi). Her sincerity has lingered with me throughout this morning and made me smile.

Abby was born independent.

She refused to sit in a swing, bouncer chair, or any of our laps for a significant amount of time since the day I first saw her blue eyes.  It was as if she was born telling us, "Excuse me. I can handle my own business. Thank you very much."

Abby is driven to excel...at anything.  If she makes a decision to do something, then she rocks the Hell out of it.  Soccer (when she chooses), academics, friendship and of course cheer.  She wants to dabble in many things. Often while driving in the car to her already crazy 6 hours a week of cheer, she'll say,"Hey mom. I'd really like to play the violin."

"Hey mom.  I think I want to try a singing class."

"Hey mom.  I would like to do a little theatre."

"Hey mom. I want to start a special needs cheerleading team at Cheerz."

That's just how her brain works.

Abby has had consistent life goals since she could talk: have a baby girl and become a NICU doctor (Yes, she knows the term, NICU).  In fact, she drew a picture of a "baby doctor" (what she called it at age 4) in her preschool memory book as a description of what she wanted to be when she grew up. 

Even though being sick with the flu is terrible, I have to admit, I've loved being given the chance to baby my baby girl for a day.  I relish in it, because rare a time does it come.  Earlier this week when I was down with the flu myself, Abby got herself out of bed (set her alarm), got dressed, did her own hair, fed herself breakfast and made herself a lunch. I came upstairs, and she was done. 

The girl can take care of her own business, but sometimes I just want to take care of it for her.

I don't know why, maybe because it's Mother's Day soon, maybe it's the fact that a large portion of my free time has been tied into organizing Deak's Run for Hope. Whatever the reason, I am feeling sentimental about my sweet girl, and I wanted to document how full of love my heart is for her, especially today.

I am just so proud to be her mom.

*Age 7*

Easter 2011

Easter kind of came and went this year.  It seemed to fall so late in the season, and our family had just returned from Disneyland and were anxiously preparing for Deak's Run.

That being said, we had a wonderful time, remembered the reason we celebrate, and truly enjoyed spending our time together.  Blair even surprised us all with Family Lagoon Season Passes, which we were very, very excited about.

My pretty girl.

 This is Deak's happy and content face; it's my most favorite:)