jumbled

I haven't posted in months. The truth mentally I've been struggling. Sometimes its hard to own that to put it out for the world to see. There is a lot of pressure to think positive, to live in the moment, to focus on the good.  I can't tell you how much I wish that was possible but at the end of the day I'm just human.

My son is dying, slowly. It's a truth I can't deny. It's a damn ugly way to live. Right now there is a 0% percent survival of duchenne muscular dystrophy.  Zero.  There's no odds to win, no poison to put in his body and hope it takes the bad stuff away, nothing, I don't even understand how that is possible.

Most the time I can shove that down. I mean I have to the truth is well it's paralyzing and I have dishes wash, lunches to pack, loads of laundry to fold. But sometimes I can't and I am afraid to admit that because the world isn't okay with hearing it. We want the feel good stories. We want the strength, and the fight. We don't want to hear about the dark times.

The nights a man and woman lay in bed and cry together because it just hurts too bad and there is only one other person that really truly gets it. The times a mom holds a little boy when he asks why? and she has no answer. The times I'm so angry at a God I don't think hears me. The times I am so jealous of everyone's healthy kids I can't see straight.  The times a little boy hurts his knee and his mom and dad gasp because his leg muscles are breaking down and they can see it. The times an 8 year old is screaming at you about being hungry and crying and tells you he doesn't know why he is so mad and mom knows its the steroids.

People tell me I'm strong or I'm special but I'm not. I'm just a person that walked into a doctors office one day and walked out broken. It's not strong to love your child it's just what we do. If I could wish this away and go back to being the mom with 3 healthy kids I would.  I think I'm not supposed to say that. I am supposed to say I wouldn't change it but that would be a lie. I want him to grow stronger. I want him to fall in love, have babies, find his life calling, and mostly I want him to live.

To be perfectly honest it's all weighing on me. He's 8 by 10-12 he's likely going to be in a wheelchair.  Every time his writing improves, or he rides his bike further, or he cuts his food with a knife it is so bitter sweet. Every time he hugs us, gets out of bed at night, every time he climbs into the car. His Dad and I know we have to watch him lose those things. It isn't supposed to work that way.

i stopped believing God has a plan on December 15th 2011. I just can't believe and accept that this was a plan for my kid. Is that unfaithful? Maybe but it's how I feel. I have lost relationships because of that and it saddens me but I can't pretend to make other people comfortable.

I am very lucky to have my husband.  When we first found out it was so hard to reconcile the different ways we were grieving. It took a lot of time and honesty and yelling to get to a place where we can say whatever horrible though crosses are mind and have someone to just wrap an arm around you and nod.  Sometimes Shelby will get really wrapped up in handicap accessible housing. That is really hard for me to deal with but it's how he copes and now I know he's handling because right now it's too hard for me. I feel guilty a lot I know this isn't my fault but I can't not feel guilty. Don't we always feel guilty when our children hurt and we are powerless. Shelby used to struggle with that and try to make me feel better but now he just listens. Emotions are not something we can control and having one person that will hold me no matter what I say it's just  a gift and I am proud we worked so hard to get there.

One more thing I want to say and I know this post has been kind of all over the place. Shelby and I are greiving. It's weird to greive what you haven't lost but still we greive.  We greive the football he can't play, or the legs w/o braces he can't have. We greive the grandchildren we likely wont have. We greive for our daugthers knowing they will lose their brother they love so much and knowing the times he gets our attention before them.  When we are angry or take something the wrong please don't be angry we never want to anger anyone we are just walking around emotionally wounded. We don't want or expect anyone to fix it for us. We just want to know we aren't alone.