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.

Silent Struggle

There are things i cant say out loud.  Places I can't allow my  brain to go.  There is a  piece missing from my life something I will never have again.  I have been saying I am so much stronger but really I just force myself to pretend I am. Maybe that is strength but I suspect in these situations we do what we have to survive. 

I have been struggling since vacation to get back into the swing of  doctor visits and therapies.  It all takes a toll on our family.  This constant obligation to this disease. As much as we try to act normal we aren't and muscular dystrophy never lets us forget.  Its the 6th family member we didn't ask for.    I am so sad for my little boy for all 3 of my kids.  i cannot explain how much I wish I could shield all of them from this disease. How much I want to shield myself, everyone that loves and cares for us really.

I never realized how much I would wish for autism or downs syndrome or something that would just make him different not something that would slowly rob me of my child.  I get so filled w/ desire to fight this disease but I have no weapon.  I have no miracle drug, no chemo, no anything. Hope, awareness, and fund raising they just aren't enough some days.  I don't mean to say these other disease diagnosis are any less devastating but please don't judge me if you haven't been here just feel damn lucky you aren't.

i am so jealous of my friends even my own mom.  I love all of them but i am different from them.  I don't want them to have to feel what I feel but my God do I wish I could feel the sympathy they feel for me rather then this raw horrible pain that will forever be a part of me.  

I have never felt such an outpouring of love before yet I feel so alone and isolated.  I am so scared to reach out to anyone dealing w/ this because I can't face what this disease will mean for me and my family in the future.  It is so hard to constantly grab at hope but force yourself not to be to hopeful.  I cant  fully believe there is a cure out there because what if they don't find one? 

My child is losing so much.  Its not just his ability to walk, or his eventual loss of life.  It is the simple things he doesn't get to have.  He cant keep up w/ his friends even now.  He will never be the first choice in gym class. He could forget what it was like to walk or spend his adulthood haunted by the years he walked.  I hate this.

I hate hearing about God knowing best and his almighty freaking plan.   seriously I don't give a rats ass what his plan is, I just want my child healthy and I am not willing to sacrifice this because of some plan. My husband and I made this child. We decided everything for him, God doesn't get to slowly kill him to satisfy a plan. I am sorry I just don't get why this plan should comfort me.If this is a plan I refuse to take comfort in that.

Tomorrow I will wake up living this silent struggle.  I will pick out clothes and tell Robbie to quit fooling around because the bus will be here any second.  I will do some laundry. Go to the ophthalmologist to make sure my 5 year old isn't developing cataracts from the steroids.  make lunch and dinner, curl up and watch TV and force myself to stay in the present because the present is the only thing I can believe in.