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.