New Normal

My normal is not what I planned on it being.   Its not all bad and it's certainly not all good.   I am learning a lot about life that I have been mostly sheltered from.  I don't think you can fully see and understand the healthcare debate until you are in a situation like this.  I am seeing a lot of my views of the world evolving and changing.  I question more and I call bull shit a lot more. I see the way we judge each other and I try really hard not to jump to conclusions because truth is i can't always see what is going on in someone else life. I am just not the same person I was December 14th 2011.

Now I have to force myself to see the blessings in the midst of such soul crushing pain.  I greive for what might have been while finding a way to enjoy what is.  Duchenne can not be everything.  It doesn't get that.  It is already taking too much. While many days I want to i cannot dwell in my personal hell.  I have to carry on.

Robbie has DMD but DMD does not have Robbie.  We can't ignore what is happening in his body.  I wish I could pretend it wasn't happening and go about collecting the memories of happier times i will need later but life doesn't work that way.  This isn't a matter of thinking positive but thinking w/ love.  Wow that sounded corny.   What I mean is accepting this disease does not mean that we are giving up.  it means we know we have to live w this disease but not for it.  As I commit myself to doing my part in the fight I also commit to just loving my little boy.

If Duchenne is going to shorten his life then I am going to do everything I can to fill it w/ love and laughter.  i am not saying that everyone in this house is not going to have dark days.  That we won't collectively and individually rail at the fates.  I am saying the anger the pain is just a slice of the pie.  That for every day we think we can't get through there is a Disney vacation, or homemade cookies, or laughter.

So we slowly adjust to this normal.  We have gone from surviving to slowly living again.  I pray that this new normal includes changes in treatment and cures. that some day my new normal will be just normal.