Stand with Us

At first, we were 2 kids that didn't know much more than we loved each other. We weathered what now seem like little rain showers and we were making it. We had 3 kids. we were happy. Our life was simple and we talked about RV's and forever houses w/ grandkids running around. I think some people get to have that but that wasn't our story.

Sometimes it feels like were reading this book and it has a terrible ending and we know that but the beginning and middle is so good we can't quit it.  I don't know if that makes sense outside of my head. I know that everything that life was supposed to be is completely separated from what we have.

Most days we find some sort of reason to get up and go through the motions of life.  It's hard most days and it's lonely because you can't just live your life unloading on people. You can't give into the darkness and anger. You can't spend all day crying. So you pretend because it's all you can do. You nod when people tell you God has a plan, it's just that yours happens to suck.  You carry on because what other choice is there?

Some people have said they don't know how we do it like we had some special hidden skill set for dealing with sick kids but its really quite simple. We love our children's lives more than we love our own. Seeing Robbie battle this hurts like nothing I have felt before. People don't understand because they don't have to and that's not said to be accusatory. It's just the truth. I didn't until I had too.

I could tell you all about hope and thinking positive and I think maybe that would be easier to digest but the truth is when it's my kid those are just words. Hope, prayer, and positive thinking are great and important but they are not enough when certain death is part of the equation. 

So we go on, a little broken by yesterday, a little destroyed by tomorrow, and somehow make it through today.  It's not admirable, we don't want, or need adulation for getting through the shortened life of our child.  We need to be heard.

We need to be able to say the Affordable care act with all its warts is vital to our son's chance of survival and we need people to hear us. It's not enough to keep us in your thoughts anymore. This is really really important for Robbie. We need you to stand with us and demand the new congress and the president-elect do what is right and fix what is broken instead fo tearing it down and risking Robbie's life.

I know I sound like a broken record but I am scared. This isn't an imaginary person far away, this is Robbie. This is as he would say about a lot of other people who aren't lucky enough to be born to parents with well-paying jobs and good benefits. This about the experimental steroid he is currently on that is making his life easier. This about families not having to fight to get their kids physical therapy covered. This is about not being denied coverage because of a pre-existing condition.  I know premiums are higher and choices are limited but is a lower premium and more choice worth the loss of Robbie? I don't think it is. Please stand with us now and demand better rational thought from our government.