War

I've spent months trying to sanitize what I want to say here. To make digestible and to not hurt anyone. Which being honest was extremely difficult because I have been working through a pretty hefty amount of pain and felt too vulnerable to share it. 

Duchenne is a war. For some people, it's something that sort of touches you. In my house, we are in the trenches doing battle every day. Sometimes because we are human it makes us hard. We get bitter and we get so angry. An anger I don't think can be explained if you haven't feared for your child's life. We get jealous. We wonder what life is like outside of this war. Sometimes we get a taste of it but it's always ripped away as we head into the next battle.

It's hard to be different especially when you didn't make the choice to be different. It's hard to feel like you are fighting every day just to keep your head above water and then someone tells you to find a silver lining or to pretend that you feel positive, or that it isn't the time to be sad. First, this is sad.  There won't be a point where this is not sad. Our life is not only sad, but sad has a pretty big seat at our table. Second, being positive is great and sometimes you have to pretend to make it but sometimes when you put that pressure on us you take away our ability, to be honest, and get our feelings out there. 

People tell us all the time how well we are handling all this. Okay, they used to before the election now people pretty much avoid the topic. The thing is I don't have a choice in how I handle this. I'm just a soldier in a war I didn't ask for. My marching orders are clear: Make Robbie's life as good and as full as possible no matter the costs. 

That is a very tall order. It's not an easy thing to do and it's honestly a very lonely thing to do.  Like eventually the shock of the diagnosis is supposed to wear off. At least that's what the world wants. That eventually you just get strong and you don't to fall to the ground sobbing anymore. To be fair it happens less over time but that feeling that makes us drop to the ground, the hopelessness and fear, it's never gone. We learn to function under it but it's never gone.  The world wants it gone because it doesn't make people feel good but it is never gone. We might push it aside and go on but it always there ready to bubble up to the surface.

I don't say these things to be dramatic. I'm not asking the world to change.  I don't want attention. I just want to be understood. I want to be heard. Mostly, I want people to see the pressure we put on families dealing with the unimaginable.  We want inspiration so we expect those most desperate to give it to us. We want to feel that saying you're in my thoughts is really comforting to someone that is fighting a war. 

Sometimes I want to know what it's like to be included again. I can't even remember the last time Shelby and I shared a meal or a glass of wine with someone in our age group.  I don't know why but I'm just not a person people like and that makes this all the more isolating.  This isn't a new revelation, it's practically a joke in my family. Sometimes though I wish it was different. That I was different.  That people didn't just see a shy angry person.  Sometimes I'm angry that I'm stuck in that category as if I asked to be this way. As if I don't want to laugh and drink wine, and talk frankly once in a while.

Maybe this whole thing sounds like a self-serving bitch fest. I really can't tell anymore. And if I'm being honest I really tired of trying to make my feelings palatable.  I'm fighting battles every damn day and sometimes I'm not in a good mood. Sometimes I'm a jerk and sometimes I cry a lot.

I think those of us struggling through things like this have a really hard time separating emotion from well just about anything. While everyone else can think about health care legaslation in the abstract I look at Robbie and it colors every view I hold. I won't apologize for that, it's a battle I have to and will fight.  Robbie's diagnosis changed my perspectives on nearly everything. It turned my life from ordinary to a war zone. 

Duchenne families do a lot of our battling alone. It's a consequence of a rare disease, there just isn't a lot of people that understand.  That makes it all the more isolating. Add to that being naturally shy and sensitive and you have a recipe for lonely.  I hope that someone finds this that needs to hear that it's actually okay to feel bad and it gives them a measure of comfort just to know they aren't alone. It's okay to feel bad and good and bitter and hopeful and sometimes all at the same time. This is a war and we are fighting battles, just keep going.

One Day at a Time

When rare progressive disease entered my family, I lost hope. Well no, I didn't lose hope it just became a lot more elusive.  It was confusing to me at first. I had always found light in the darkness. Well to be honest before Duchenne touched my life I had a lot more light then darkness. That's not saying my life was easy but compared to watching my son battle duchenne it was a lot of light.

I was always a positive force in my family, within my marriage, to my kids but suddenly faced with an illness that offered my child no chance of survival that felt fake to me. I felt guilty that I felt so dark. That faith, hope, positive thoughts were foreign to me and frankly, they pissed me off. I spent a lot of time trying to hold on to that part of me. Trying to fit the role of "mom of special needs child". 

I was angry and I had right to be. I was scared and I was right to be. I was grieving the loss of a child I thought I had. That right there was and is the hardest part of all of it. I love him so much my heart could burst but there will always be the alternative him.  The healthy child I never had but until diagnosis, I was sure I did have. The one that could ride bikes, play baseball, walk to the bus stop, walk into adulthood. the boy that wouldn't lose his ability to hug me.  It feels so wrong to grieve what was never meant to be yet I'd be lying if I said I didn't. 

Tragedy changes us and not always in the way the world, our friends, our families, or ourselves want it too. There just isn't a correct way to be sad or angry or grieving or for that matter happy. I know people think I complain a lot about my life. I do, brutal honesty helps me. I understand some people like denial and I get it, it's just not for me. Positive thinking wasn't working and I'm finally at a place that I am okay with that.  I'm more cynical. I don't believe there is some magical reason this is all happening like it was predestined I simply can't believe that and function.

When Robbie was first diagnosed I kept waiting to find peace or clarity.  I didn't find it in faith, positivity was pissing me off,  and inspirational sayings or quotes were making me crazy.  I realized that the really hard things,  They don't fit into the boxes we want them too.  There isn't a right way to be sad. There's not some special parent club you gain access too. There isn't a duchenne kid for dummies book.  While I wanted to find peace where the world says I should,  I could not.  I still can't.

For me being strong and fighting through duchenne means to be super candid. It means saying "this sucks" when it does in fact suck. I know that for some people it looks like "complaining" or "drama" or maybe even "depression" but honestly I'm just working through shit. I feel it's healthy, to be honest and open about my feelings. It's not always going to be pretty but it's going to be real. I am mad and sad but I am happy and joyous too.  I can't put on a happy face and pretend things are fine because I want my kids to feel free, to be honest about what they are feeling.

Having a sick child is draining. There are times I am so frustrated and stressed out that I have to cry. Ugly shower crying.  I can't make this better for him. It's a painful truth and it's my truth. I've wasted so much time trying to figure out how to "correctly" deal with duchenne. How to "correctly" word my message as to not offend.  It's a weird situation I think society puts people into.

We don't want to feel the yucky messy things so we try to minimize them in other peoples lives. We often use words and language to make ourselves feel better w/o a consideration to how it make the person actually suffering feel. I don't think its purposeful but I do think it's time to change.

We have to realize there are no words to make these things better. There is just not. If you tell me God has a plan when I have repeatedly said it makes me angry how does that help me? It helps you and I am glad it helps you, I'm glad you're comforted by that but please allow me to not be comforted by it. When I am crying hand me a kleenex. Let me cry, I need it. Let me be angry. Don't tell me to look on the bright side because you don't know how hard I have worked to find light and hope in a fairly hopeless situation.  Give to charity, sign petitions, listen to be when I am down.  That is all I need. If I am doing something that doesn't make sense to you maybe decide to let me have the space to handle something you are not or have not had to handle.

We have to start letting people be upset the way they need to be upset. We have to understand that sometimes a broken person is a strong person. That telling someone to smile because it's easier for us to look at doesn't cure what hurts them.  We don't always understand the battles people are fighting.but we don't have too. We don't have to make it better. We can't make it better. We can make it easier, we can listen even when we don't like what we hear, all we have to do is be there.

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.