December.

December came and left us in a blur this year.  Though I consciously attempted to soak in the moments, I'm afraid the hustle of the season may have overtaken me more often than not. I love making memories, and the anticipatory craziness that surrounds each activity. I love that Christmas allows me to plan and create and be a little domestic.  I enjoy being traditional; wearing an apron and baking from scratch.  I love that I don't have much choice in guiding my thoughts towards others and towards my family.  I love the Lord, and the reason for celebration.

I guess, I love Christmas.

Visiting Santa...

Deak actually really liked the Big Guy this year, and was excited each time we spoke of him.  I've been waiting a long time for excited Santa giggles from that little dude.

Deak, pretty much doing what he does (ipad).

Abby's first time outdoor ice-skating.  She eventually braved "letting go" for a two foot span.  After we left, she begged and begged to come back again.

 

Making our homemade Gingerbread Cookies...

Ab and her cute friends, exchanging gifts.  Brittney to the right (next door Bff who moved in this year) and Briawna to the left.

And, for good measure...Deak.

Love What You Got.

Last night before bed as I stood in my little girl's room praying with her, I could not help but feel.
She was tucked in, looking like the baby girl my heart longs for her to stay, and I was taken aback by a wave of emotion that emptied in my heart.

I consciously listened to the prayer I was reciting and found myself thanking my Heavenly Father for the stuff that so often in my past I've taken for granted.
People often say things like, "I'm grateful for food, I'm grateful for the roof over my head, I'm grateful for my family."  And, trust me, I am guilty of rolling off the standard phrases more often than not.

But, last night I realized that I mean it.  Every word.

I've said aloud a few times, that I think the Lord knew what he was doing when we ended up on a crazy path last year that circled us back into our home.
I needed to understand, I needed to feel gratitude, I needed to show gratitude.

My most important prayers are the ones that tell the truth.
The prayers of gratitude at 1:00 in the morning, after a long and tiring day, and I realize that my right leg has not ached once...not once. The prayers of gratitude sent at 5:00 on a Wednesday afternoon as I walk to my car from the grocery store, and realize that I made it through without a scream from Deak.  The prayers of gratitude that are sent at 9:00 as I put my not so little girl to bed, listen to her recount the plethora of reasons as to why her bedtime should be extended, and feel nothing but love.

I feel so lucky that the experiences I've had in my 33 years of life have lead me to a place where my heart can swell with gratitude over healthy bodies, uneventful grocery store trips and drawn out bedtimes.

I am grateful.

Halloween 2011 in Pictures.

Despite the picture documentation, I did attend these activities...I even dressed up to the last one.

We like our family and friends.

And, Deak really likes the candy bowl.



Time.

Building a relationship with Abby is not easy.
She has just got this solid exterior, and it takes a lot of work to crack through and figure her out sometimes.
It is labor intensive and time-consuming...
But trust me, if you put forth the required effort, it is infinitely worth the reward.

I took her to Chili's tonight.
Deak took his first step, and for some reason my heart needed to share that moment with her.
She was so excited and said he will "walk in January, because that's when he likes to do things."
I love the way she believes in him.

She likes being with just me.
I like being with just her.

She chatted about her class, her best little friend and a girl who "gets into everyone's business." 
She expressed concern over the choice her friend made to share her "crush" with the "nosy girl" because she is certain she will tell him (I told her she was right.)

I found out two boys like her, and I can tell she is kinda stoked about one of them, though she will go to the grave before admitting it aloud.
She said that when the nosy girl told her he liked her, she replied "Gross" and the other dude never had a chance because he is a BYU fan.

She said the "nosy girl" likes the boy who likes her (Abby).  I told her to watch out for girls like that, because girls can do some mean things about boys.
She nodded her head, but only to appease me.
She knows she can take that girl any day.
Mostly because she just doesn't care.

I talked to her about my first crush and the pukka shell necklace he wore to school everyday.  He asked to be my boyfriend right before my parents told me we were moving to Utah.
I was crushed.

She giggled.

My heart was filled to the top with gratitude that I got such a dang good kid.  I am so unbelievably proud of her. 

My first baby, born with an old soul.

As we walked out of the restaurant, a couple of boys that looked to be around her age elbowed each other and watched her walk around the corner.  She turned her head, looked their direction, then up at me, and smirked.

I asked her if she knew them.
She said, "No" with a smile.

Man, we are heading for trouble.

My invested time tonight was repaid tenfold.

(Dressed in self-proclaimed "Utah Colors" to church after the beating they had against BYU:)

*PS...mention this post to Abby, and you will pay deeply...

One Little Step.

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.

*I am still doing the private thing...when I have some actual time (It's kinda a pain).

Private.

I believe really strongly that one's instincts or "gut" tends to pull you in the right direction.
And, I learned a long time ago, that in my case, I always need to listen to those instinctual promptings.

Lately, without any factual base, my gut is telling me this is what I need to do

My purpose, other than to document my little family's history, has always been to enlighten "the world" via Deak and his message of hope.  I believe I can still do that in other ways, most significantly through his Run for Hope (2012 date coming soon), and my relationship with the Chromosome 18 Registry and Research Society.

There may be a time when I stop being private.

But, for now, I need to be.
I'm happy to share my little life with any and all of you, if you are interested.  Leave an email in a comment, if you feel comfortable.  Otherwise email me at jehowe@gmail.com.

Until then...

Letting Go.

Deak is big (and by big, I mean really getting huge)...

But, he is still my baby.

The same way Abby is still my baby, and will be forever.

We were given the "go-ahead" from Deak's neuro-surgeon to begin physical therapy again about a month ago.  I was ecstatic to find out that we were able to get into the highly sought-after physical therapist at Shriners, and was anxious to see if any leg strength was apparent after our tumultuous tethered spine surgery experience. 

Last Wednesday, Deak and I made the trek downtown after a long day of work and school.  It is tiring to go to physical therapy at 5:00; tiring for both of us.  Deak has been working really hard on "breaking gaps," meaning that he is working on cruising and walking in between spaces that don't continually run together (ie. the couch and coffee table).  Deak has only been to three appointments in the past month, and during the first appointment, he dared not even walk the "gap" of about two inches.  It scared him to death. It is so interesting to watch his amazing little brain process the situation:

           He stands along the bench, notices the gap, bends down to look very closely at the gap, takes one arm off the bench and measures how far he will need to venture in order to cross the gap, bends his knees and thinks about getting down and crawling between the gap, and then eventually decides to cross it. 

The entire process, at first when he is evaluating the risk vs. reward, can take quite literally five minutes. 

Deak is just too smart.  

Most children, when they are learning to walk, have not progressed to the stage cognitively where they are able to compute such a high-level calculation.  They just do it, without fear for the consequences.  Deak isn't there. He has fear.  He knows it hurts if you fall, and he doesn't like to fail.

After only three appointments (and practice at home), Deak is now confidently walking (without his walker) in between gaps upwards of 1 1/2 feet.  Another inch or so, and the boy is taking steps on his own.

Deak's therapist, Mark, has been gently "chastising" me.  He is constantly reinforcing the abilities that Deak has and reminds me that I need to let him fall once in a while.  Last week he actually said, "Jenny, Deak's legs are strong enough to walk now; that's not what is holding him back."

Yep, I am.

I know he is right.

But, how do I let go?

He already has so many things in life stacked against him, sue me if I want to catch him and carry him a bit longer.

Plus, that damn walker is NOT easy to carry around and walk inside of in the real world.

Since our appointment Wednesday, Deak has nearly stood up on his own two feet from a sitting position and was sosososososo close to taking an independent step after balancing on his own two feet for a few seconds in front of the couch.

So, close.

The walking stage is coming for us. 

The stage I've hoped and dreamed and prayed for.

I just need to let him go.

 Deak's crazy new favorite position.  He does this ALL DAY long.

My attempt at following the therapist's advice and allowing Deak to "walk" in the real world.

It was hard work (for all of us - Abby is a rock star helper).

But, it was empowering.

Deak complained a bit about it, but I think he also enjoyed being able to randomly take off and walk to wherever his mind determined he wanted to go.  Deak was very cautious at first, but I knelt next to him and told him that he could do this. I told him he was a "big boy" and could walk now, and he needed to push through.

He looked at me, smiled, and gave me about ten big kisses on the lips in a row.

Man, he is growing up.