Insomnia

The year Robbie was diagnosed started as probably the best year of our entire life. We were happier than ever. Our kids were healthy, we loved the life we had, and we were planning the next step. Shelby and I had dreamed of a craftsman house with a big front porch and we thought we were on our way to that. It seems silly and stupid now but at the time it seemed super important.

I wish had the skill to put to words what diagnosis does to a family's life.  I have tried many times but it is so hard to explain. I guess it's like the bottom drops out. Nothing is ever the same.  I changed, we all did.  You know in like war movies or I guess in a war when you see a bomb drop. It's always just the bomb drops then it cuts away after a few minutes. We never see what happens afterward. The devastation, the fear, the grief, the hard work of getting through day after day, when one moment has changed everything.  We never want to see the rebuild. We don't always like the way things are rebuilt.

There were parts of Shelby, the kids, and I that were destroyed by the diagnosis and there were and are parts of us rebuilt or being rebuilt that are more strong and more beautiful because we have survived.  Survival has come at a price though. It's really hard to communicate those things. Like how much I love seeing Robbie zipping around in his chair but that the existence of the chair in our life breaks my heart.  That I once said to Shelby " We should bury him with that." and then hated myself for weeks after. That my 15-year-old is really concerned she may be a carrier and has to consider things 15-year-olds shouldn't have to consider.  That my 9-year-old is constantly checking surfaces to make sure they are safe for her brother so he doesn't fall again. That Shelby had to decide to stop trying to further his career because we are in a good situation right now, insurance wise, and we can't risk rocking the boat.

I always fear sounding too positive or too negative. Sometimes I think that is the hardest part for me. We have to advocate for him. That means saying things that aren't always positive. That means standing up for what protects him even if we have to stand alone. I, no, we were so angry after the 2016 election. It's hard to put into words what it was like for us. Honestly, I don't really want to upset anyone but everything that happened. It hurt. It was like a sucker punch to the gut. Here was this party that wanted to take things from my child that he needed to survive and this country I'm supposed to love gave them the power to do that. It wasn't just an election to us, it was a battle for our child's survival.

I am not being dramatic just honest. We all like the world to be simple. We like to draw lines in the sand and label this thing bad and that thing good. We don't like to be challenged. We want the people around us to see what we see. To hear what we are hearing. We want the people that we love to be who they have always been. Life just never works that way.

Shelby, Robbie, Kelsey, Madi, and I do not have a normal life.  We are different. Sometimes it makes us feel very square peg round hole.  Often it just makes us feel like we don't belong. We aren't exceptionally happy but we aren't in mourning either.  We do live with this constant fear and it's not the same for each of us either.  We all go through different waves of emotions at different times but we get through it every day somehow and do it again the next day. Often silently struggling.

You're whining when you share your feelings. You're irresponsible if you ever share the times your mind wanders to the what ifs. You're jealous when you cry because things like dream houses, dream cars, dream everything are out of your reach and you miss dreaming about them. Okay, that is jealousy but it's not greed.  You are dramatic. You could do more. Your tired and lazy when you can't sleep because the enormity and weight of the future hit you like a ton of bricks when the lights went out. You need therapy if you let the sunny facade slip.  You have to be okay because this was just the card you were dealt make some damn lemonade or some BS from people that have no clue because they don't have to and they don't want to hear about it.

All I really wanted to say is that we are imperfectly going through one of the most devastatingly brutal and fatal genetic illnesses with all the grace and humility we can muster. We might seem fine or we might seem angry and awkward but at the end of the day, the five us are doing the best that we can.

Wednesday Night

Memory is a weird thing. When Robbie was first diagnosed I relived diagnosis in my head over and over again. I could explain it in great detail. I can't exactly do that anymore.

I don't remember the doctor's exact words. I remember my hand was in Shelby's hand and we were both gripping each other's hands so hard.  I don't think I sobbed maybe silent crying. I was trying to listen and keep together. I was in no way accomplishing that. I remember the doctor's hand on my knee. I remember telling them he just started riding his training wheel bike hoping that meant they were wrong. I remember the nurse leaving the room to give us a minute and collapsing on Shelby's lap. I know said "Not my baby." I don't remember what he said. I remember wanting to get to my mom in the waiting room. I remember calling everyone and when my aunt Debbie called I couldn't talk and my mom took the phone. I remember my brother was at Target when I called him. I remember the office staff and doctor leaving for their Christmas party. I remember the stupid decision to get Santa pictures that day. I still can't look at them.

It's weird that a day that changed the entire course of my life is remembered almost like snapshots. I didn't think I would ever be able to move on from that moment. I really thought it was the end of times. I didn't know how one continued on from a moment like that. In truth, I can't explain how we did.

The grief has never left. I doubt it ever does. I've lost people I love in my life but this? My baby. There is no therapy, no chocolate, no inspirational qoute, nothing that makes it not hurt. The knowledge I can't stop it, I can't make it better no mom or dad should ever feel this. No child should ever have to live this.

I haven't really allowed myself to blog in a couple of years. Here and there but mostly I was afraid to share what I was feeling. When you first get news like DMD no expects you to be okay but eventually. You are supposed to be positive. You are supposed to strong or well I guess the fictionalized version of strength.  So I faked it. I fake it all the damn time. Not for my kids or my husband, not for me, but for everyone else. I don't know why it happens and I suspect I'm not the only person in a hopeless situation putting on masks.

Things are rough for us currently. Life just isn't giving us a minute to breathe and I feel like we are on an island. The dark spot in otherwise happy groups of people.  I'm angry and I am so tired. Living my life and the life I feel like I have to constantly project, it's draining.  Duchenne is expensive in ways that most people don't understand.  Half the damn world is not accessible.  Every dream Shelby and I had is just gone. there won't be a craftsman with a giant front porch. There will be no RV, there may be no retirement. No college degree for me. No dream job for either of us.  The life we planned went up in smoke that day in 2011.

I'm okay with losing the dreams or at least I try to be. They were never reality, so it is what is. Robbie though, he deserved better. He deserved to be healthy and whole. He deserved to be able to go to 6th-grade camp. He doesn't deserve to face his mortality in his childhood. He doesn't deserve to have asked me if pre-existing conditions are still covered. 

Our life isn't a disaster zone. It's just hard and real. We love and are loved in return but I can't keep pretending things are fine when they are anything but fine. I can't stop yelling about taking care of the most vulnerable in the world and if that causes people to turn away from me well then I hope life treats them well and kindly. 

Feelings are Hard

There have been so many times since Robbie's diagnosis that I have felt alone in crowded spaces. That I have felt different when I wanted to feel the same. Conversations where I can tell in someone's eyes they have stopped hearing the words I am saying.  When I have been dismissed with a think positive or God has a plan. Honestly, can we just stop saying those things? Maybe you're right maybe there is a plan, but right now it doesn't help me. It just makes me feel like my feelings are being dismissed.

Emotions are rarely one size fits all and sometimes they are complicated. Sometimes I can feel immeasurably happy and sad at the exact same time. I can fully appreciate the freedom Robbie's power chair gives him. I can let his giggle and smile fill me with joy and still feel so freaking angry and sad that my son has to face duchenne. That we are as of right now powerless to change the natural course of his condition. I can feel happy with his newfound freedom and sad about what it means in the future.

People always think I am too angry or that I am a hero for still smiling, laughing, and living. It's frustrating because first, I am angry.  I am angry that there is no cure and that science is unable to work faster. I'm angry that I have to beg my government not to take the 10 essential health benefits away. I'm angry that Robbie's life is harder than his sisters. I'm angry that so much is demanded of my girls. I'm angry that someday my girls will get pregnant and they will be terrified and there is nothing I can do or say to make that not happen.  I'm angry that a cell divided badly in my body and my son has to pay the price. That doesn't mean that I am always angry or that I am ruled by my anger.

Second, I am happy every day. I'm deeply totally in love with my husband. We have the kind of love that they can never quite capture in books or movies. Imperfectly perfect. I have 3 of the most amazing kids ever to walk this earth. Empathetic, smart, beautiful children, that will change the world for the better.  I have the means to feed and clothe my family. I am happy, I'm just angry too. 

I see all the good things in my life. It doesn't take away from them when I'm angry or sad. In fact, it makes the good things so much more amazing. When we first got his diagnosis I thought being strong for him meant being happy and cheerful. I was so mad at myself because I wasn't like that. Eventually, the shock of diagnosis wore off and we had to decide as a family how we were going to face this. We decided honesty even when it is ugly is the only thing that would work in our house.

I don't want to feel like I have to pretend to be happy and I don't want my kids to feel they have to pretend. This is a hard hand they were dealt and pretending it's not will not help them. I feel like I am saying we are depressed all the time and it's really not what I mean. I just mean if one of us is upset and needs t cry, if one of us is angry and needs to express it, or if we need to watch an inappropriate movie and laugh out loud about stupid crap we are going to do that.  Honesty doesn't mean we are always sad it just means we aren't always positive.

I hate the relentless pressure to look on the bright side or to think positively. I'm not a negative person, I feel I'm mostly optimistic and I try to see beauty in darkness. I'm just not a super sunshiney person. If you are that is great but please understand that Robbie's diagnosis didn't come with some massive personality changing pill for me. I've always been serious and shy, I've always liked reading and writing more than sports and stuff.  I always preferred small intimate get-togethers to big loud parties. I'm still that person. I still struggle to ask for help. In fact, most of the time I won't. Learning to advocate for Robbie has been a process for me. It didn't just come naturally. I work at it all the time because he needs me to do that so it doesn't matter that its hard it just matters that it happens. I hate pretending I'm fine when I am not fine and I will not make my kids do that.

I think strength is different for every person. For me, I think my strength lies in being able to fully feel my emotions. I grieve when I need to grieve and I can get through it because I can let myself face the hard stuff.  Sometimes I take an hour or so and just cry it out. then I can focus and figure out the next step. It's how I'm wired and embracing that makes me strong.  Other people use positive thinking to get through stuff and they are also strong. My husband breaks things down into small pieces and goes to work one at a time. It's how he is wired and it makes him strong. If two people survive cancer and one was feeling like crap and angry and one was super positive and sunny wouldn't we still feel they were both strong? Would the positive person deserve to survive but the angry one not? Of course not, because at the end of the day no one deserves the bad things or the good things. They are just life and how we get through it is specific to each person.

I don't mean this as some kind of takedown against people that look on the bright side quicker and easier then I do. I'm honestly a little jealous that my mind doesn't work that way.  I just want society to appreciate that we all face things we aren't expecting, we all have down moments and that it is okay to feel sad or angry.  That when I am sad, I don't need anyone to make that go away. I mean there isn't a word that word makes it go away, I just need you to hear what I am feeling and let me feel it.