stress

One day the inconceivable (Princess Bride!) became my reality. A year ago at this time we thought we were starting an amazing year. We were quite wrong. 

The weight of DMD is so unbearable. I never have a minutes peace from it. There is not a point in any day where it isn't lurking in the back of mind even when I force myself to not go there.  It's a pain that is indescribable yet I feel called to describe it. I try to find hope when there ins't much. I try to believe it will be different for Robbie that they will find something and he will get a normal life. The darkest truth though is that I also have to accept my child's inevitable death from this disease.  I can't pretend it will all be ok because right now barring divine intervention it will not be okay.

I want to face this w/ a combination of grit and grace but there are times I have neither. There are moments it takes all I have to not dissolve into a sobbing, screaming, mess.  Every view I have ever had of everything is different now.  I am the mom of a handicapped child.  I am different from most people. Instead of watching my children grow stronger I will watch one of mine grow weaker.  

To be perfectly honest I am terrified of the future. I don't know how I will handle caring for him.  Am I really strong enough for this? Why didn't this happen to a boy w/ a more organized less scatterbrained mom?  Why are we so far from our family? There was a time I relished the freedom of being so far away. When we left I needed to take that step of independence now I wish I hadn't taken it. Wow that sounds pretty selfish.  I love my family I just have a very hard time saying no and moving afforded me the luxury of no. 

I feel guilty now because my little boy loves family so much and he has missed so many family things because of the choices Shelby and I made.  Then at the same time I absolutely love living where we are. I love my kids school and my kids pediatrician.  I like my low rent and barely there winters. My kids have friends and a life here but they miss their family and between school and rising fuel costs we can't bring them to visit their family as much as I'd like too.

On top of all that Shelby's job has become very unsecured at a time we need it to be secure. The added stress of this is just I mean it's incredibly unfair.  We have a job offer near my parents and money wise it works except they are barely going to help w/ moving and I just don't think we can make it work on our own dime.  How do we walk away from that though?  I hate making decisions out of fear. We had decided to really give ourselves time to adjust to this diagnosis before we made life changing decisions but now we are forced w/ a choice.

I don't know what to do. Nothing feels right. My gut is staying suspiciously silent. I just want one thing to be easy. Just one part of our life to feel normal.