Winter blues

The world around me keeps going. It seems everyone is moving on and living but I am still here. Still sad, angry, still in hell. There moments of sunshine, days it doesn't feel like hope is gone but darkness always comes back. 

I hurt everyday and then constantly feel guilty like I am not allowed to admit it anymore. Sometimes it feels like everyone around me doesn't want to hear it anymore. I can't help that for me it is every hour of every day.  I am filled w/ hope begging God to let Robbie be saved to let this be the generation of breakthroughs.  I am filled with a sense of loss, a feeling of distrust.  Everything I thought about life, faith, hope...was it all wrong?

I am told to focus on the positive which is usually said as a way to make me feel better but is honestly laughable. You mean the fact that my kid is still alive for the time being. Right, yeah its not good enough.  I know there are no guarantees in life but damn't this is worst then that.  It doesn't matter how much i think positively it won't change this. There is no cure. That is the life I lead.  There is no silver lining there.

I just want what I thought i had. I don't understand why us? Why Robbie?  Why anyone?  Why does this happen to so many families and we all just let it happen?  Years and years, generation after generation, and no answers. 

I love when doctors ask what led us to testing.  For some reason saying nothing I thought it was a speech delay always makes them flustered.  Its  horrible but it's like sometimes I have to make sure they know I'm destroyed, that this makes no sense, that I am beyond angry.

Pain like this is so indescribable and the worst is eventually I have to put it away.  Not for me but for everyone around me.  It's annoying but understandable. I get that seeing me sad is hard for the people around me.  I even get the desire to make it better. I know it comes from a place of love.  I end up pushing aside all the bad stuff because I can't stand seeing everyone else's pain and I want to make them feel better. It's like a circle.

This is my child. He's real.  He loves my cooking.  He loves Curious George.  He clings to me when he  is scared.  He likes to read to me.  I am supposed to make it better.  I am supposed to have the answers.  It is me that is walking around w/ a broken heart day in and day out. Oh my God it never stops hurting.

Then life has to keep moving. So the motions of life they are still there. There's still homework, and report cards, dishes, laundry, cooking,sweeping,planning fundraisers,  and all the while I have to smile. I have to go on vacation and not be jealous of the millions of moms walking around w/ their healthy sons.  I need to not tell off the lady bitching about my use of a stroller for my child who she feels is too tall.  And the worst thing? I am supposed to walk around freaking grateful he's not gone yet.

I know that was a horrible thing to say but I refuse to sugarcoat at least here.  I am up not asleep because tomorrow night I have to put my son in leg braces when he goes to bed. I have to because of some mutation in exon 45 that I can neither change or make better at this point.   I will smile and hold him.  Explain muscular dystrophy again being as truthful as possible.  For a brief moment I will savor him in my arms.  I will be thankful then.  Not because "I will be cherishing the time I have left with him" but because loving him is enough.  Even when it hurts me being the one to hold him when he is scared is enough to make me keep going.