What is Joubert Syndrome?

.perspective.

I used to be a pretty avid runner. I ran track in high school and then continued to run on my own nearly everyday, participating in my fair share of 5k's, 10k's and a half marathon. When I got pregnant with Parker I even ran until I was about 5 months pregnant. Running was easy for me...I didn't really have to think twice about it and could run 5 miles without it being too difficult.

Then Parker was born, I went back to work, he was diagnosed with Joubert Syndrome, and everything kind of changed.

I was no longer able to carve out the time to run due to working full time, balancing dr appointments, therapy appointments, managing the household, etc.

Call it an excuse- but I was just too emotionally and physically exhausted from merely surviving this new journey we were on that running didn't even come close to being a priority anymore.

Since Lane has been born, I am now staying home with the boys, and we live near family, I decided that this year I want to run a half marathon to prove to myself that I can do it.

That despite the crazy rollercoaster we have been on the last few years, that my body is physically capable of pushing itself to train and run 13.1 miles again.

Before my training for my half marathon I ran in 2009 was somewhat effortless. I didn't have to push myself very hard. The miles came easy and I was able to finish the half marathon without a problem.

This time...

IT. IS. HARD!!!

I am having such a hard time training for this half marathon. Each mile is so painful. I have to psych myself up before each run and while I am out running I literally have to keep telling myself to just put one foot in front of the other.

I want to give up. I don't want to willingly put myself through this tough training.

But then I sit through Parker's physical therapy where they are trying to teach him to stand on his own and learn to walk and I keep thinking of how often I take that for granted.

Take for granted the fact that I have the gift of being able to walk, to run, to move my body exactly how I want to without any limitations.

Parker works his little booty off 3 days a week in physical therapy and occupation therapy teaching him to do the simple things that I take for granted.

And this has inspired me to continue pushing forward with my training.

Will I still dread each of my runs?
Probably.
Will I still feel like I want to puke during the long runs?
Most likely.

But I will always have the reminder in my mind of how hard Parker is working. And if he can work as hard as he is and continually make progress despite all of the odds being stacked against him.

Then I can finish out that last mile.

Perspective taking can make the world of difference and for me, the simple act of training for this half marathon has been a challenge, but with Parker as my motivation I know I will cross the finish line with his beautiful face in my mind!!

Here are some pictures of Parker in therapy and what he is learning....









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