Whatever

I am so tired. Just the constant barrage of crap.  I want a break, just a few minutes to not feel bad.  I don't want any of this and I am so tired of feeling so out of control.

Nothing makes sense anymore. I cant remember what it felt like to feel things would be okay. It feels nothing goes in our favor anymore.

I hate steroids. The way they are affecting Robbie's behavior and that i keep giving them to him. Is it even even working?  Stupid athletes taking things like this by choice. Assholes.  Just so you can make a couple more million, wasting years of their lives when Robbie has to take them just 2 stay upright a few more years? I have no respect whatsoever for people that do this.

I hate how much our lives revolve around this disease, illness, condition.  We cant even think about buying a car, house,  well anything w/o wondering if it will be adaptable when that time comes.

I just want my damn normal life back.  I want to feel again.  I am numb. I have no choice I feel like it is numb or depressed that's all I have. My faith is nonexistent. I try to find it but I don't even see the point anymore.  Why is this happening to anyone? Where is God? He is a little boy, how is this even remotely okay.

We have to pay a 160.00 ticket we got on our anniversary for a stupid traffic violation Shelby didn't commit. Seriously world there isn't enough crap we are dealing with? I know that's nothing compared to everything else but it's like we had 1 night to have fun and we get a damn ticket.

How can we live in a world where this just happens? Why are people winning millions of dollars in lotteries yet we struggle to fund research for these diseases? Why do I have a stupid genetic eye disease the prevents me from even getting a few hours out of the house?  Why was I blessed w/ this amazing little boy if he was just going to be taken away from me slowly while I sit by powerless?

I yearn for other diseases. How sad is it that? I don't want Duchenne. I'm not a carrier. It just happened. A cell divided wrong and then boom... misery. 

Yesterday while I took a shower Robbie started having a monster temper tantrum. My girls were freaking out. I had to tell them to lock themselves in their room. Part of me died.  I know he was out of control but he was just yelling and I was able to calm him but I think it was the first time I actually really saw a steroid side effect.  I had to tell my girls to protect themselves from their brother. I hate myself for that. I know I did the right thing but it hurts so so bad.

Shelby and I have been fighting about really stupid stuff. It happen and we will get through it. Sometimes we only have each other to lash out at. We try so hard to hide the anger and sadness from each other. Each of us trying so hard to be strong. That can only last so long and then we blow up.  After the big blow up we can usually sit down and talk it out or cry.  We get so far inside ourselves that we forget we can share our load.

It feels like life is moving so fast. All I want is for it to slow down give me some time to enjoy life before that thing we can't ever talk about. We can never think about after.  We call it the "end stage".  I don't want his life, our family to always be in the end stage but it feels so close and I can't even let myself hope we find a cure before then because then it will hurt more after.

I had to get that out or all these feeling would cripple me for days. If you made through all that well I'm sorry I know it wasn't very pleasant.

Strong enough

Most the stuff I type here is hard for me to read.  I really wanted to have an honest place to just put my thoughts to words.  Actually there was a part me that felt and stills feels someone needed to say this sucks.

I am all for hope and fighting, prayer and spiritual strength, but I don't think that can be the whole story. As parents in this community I think we have a responsibility to tell other moms " You don't have to be strong.  That being sad, stressed, scared, and angry doesn't make you weak just human.

I know we all want to be the amazing mom w/ the charity. The mom yelling the loudest, leading the charge, but its just simply not in everyone.  I have spent a lot of time feeling like I wasn't good enough. Every time I read "I had to make a decision or wallow or fight" or something like that I felt a punch in the gut. I would get angry. Start feeling like I was letting Robbie down.

My strength isn't organization.  I literally dread making phone calls even to order pizza. The deli counter can cause me to have a nervous breakdown, and don't even get me started on special orders at a restaurant. I can't change this part of me because Robbie has Dmd. 

It has taken me a long time accept that my fighting will be done in this house or surrounded by others.  Robbie needs mommy. He doesn't care that I don't run a charity. He cares that I love him through all the challenges and mountain climbs we will face.

Robbie needs me to be his advocate not muscular dystrophies advocate. I fully support the mothers that are leading the fight. They are my heroes but that doesn't. Mean the moms quietly charging forward in the face of the unthinkable aren't heroes too.

I guess I want us all to have a voice.  I want any other mom still grappling w/ some of the worst news imaginable that, it's okay. You don't have to be super mom.

Getting this kind of news, watching your child struggle, and facing an uncertain future is HARD.  There are days you will want to hide in bed and pretend this isn't happening. Do it. Give your self time to feel sorry for yourself.  This isn't supposed to happen to our babies. It's fine to be angry.  I yell at God daily. I figure if he cant handle me being mad at him how powerful can he be?  It's okay to fight to charge on. We are all facing the same mountain but  we will all climb it differently.

Every day I wake up, tell my kids I love them, and have as much normal time as possible.  Today Robbie asked if I always knew he had muscular dystrophy and if it was hard when we found out. I told him we didn't know until he was 5 and it was the hardest thing I ever had to hear.  Then he asked if it hurt when they cut him out of my belly. Boys!

I just want us all to be the best mom we can be. Facing this mountain is courageous.  Loving them is all out kids need.  If you are doing that you are doing your best.

Insomnia...the Blog.

I have spent a considerable amount of time in the past this last week. Untangling the knots in my family tree. Obsessed in a way. Part of it is that I have always been a history geek.  Give be a 1000 page Marilyn Monroe (We share a birthday.) biography and I won't come up for air until it's finished. I suspect the obsession this week was simply that what happened 100 years was easier then the present.

Be fore warned this is not a pretty finding inspiration and fighting on post. I am grateful yet angry and sad at the same time. More equipment entered our life this week.  It's almost like the week of diagnosis again.  Leg braces. I don't have the technical words down yet so bear with me. 

I am so grateful to have this equipment to make Robbie's life easier. I am pissed we need to make his life easier. I am sad that in my head I worry it's happening to soon. That we are moving closer to the dreaded "end stage".   I want to scream and rail at something, someone, God, the Physical therapist, the neurologist. I can't because this time my feelings have to go 2nd.

When we got the diagnosis we kept it from Robbie at first. We took time to really get our selves together before we started talking to him.  He is fully aware of muscular dystrophy now. Honestly he isn't above using a "I have a muscular dystrophy question" stall before bed. He is nervous and apprehensive about the braces. So I have to fake it for him.  I have to find a bright side, act like the blue camo and green came look good, I have to be okay so he can be okay.

Not that I am doing a bang up job of the whole thing. When we took them off tonight, he had the left the family room, I got up to put them away. Kelsey and I were watching some reality thing and she looked me right in the eye. She saw my brief moment of reflection as I looked at them in my hands. She just gave me a sad smile patted me on the hand and went back to watching T.V.

She doesn't know that was probably the most comforting thing she could do right then. I feel like on top of keeping it together for Robbie, I have spent a lot of time comforting other people. Sometime I want to scream. "I'm not a damn expert, just his mom!"  I get it, lots of people love him. We all want him to be the kid that's I don't know the best at Duchenne's?  At the same time I feel like sometimes I need to say I know you love him but I need time.

Honestly why did I just think of that?  I get angry occasionally and it's not justifiable at all. I can't ask everyone to just know what I need from them.  I think I really just need to be honest and selfish at times. There are days that being strong for him takes everything I have. I forget that I can say, no, I need time.  These people that love him love me, I'm sure they would understand. 

Okay this is starting to feel like a slow motion train wreck. So hopefully I got enough off my chest that I can get some sleep.