Here, on Mars

When did my life become alien? I try to remember the exact moment but maybe it just always was and I didnt notice until duchenne entered our world. I don't know and not sure it even matters when. It just is.

I used to try to be a relentlessly optimistic person. I aspired to be more positive all the time.  I hated that people saw me as ditsy and naive but I put a lot of effort into being that girl. Shied away from confrontation (still do) until it was a weapon people could wield against me.  I would shove down every negative feeling let everyone walk all over me just so maybe they would like me. I wasn't good at it and eventually it would come out and be ugly. I kept trying to be that person, i thought I was supposed to be, I could explain any awful thing away by saying it led to this other positive thing. I was reliably a yes to everyone in my life.  And then Robbie's diagnosis came and I just couldn't be that anymore.

You don't know how many of these I write and never post, How much time I spend trying to justify the totally justifiable things I feel.  How many things I wish I could share things that have been said to me the last 8 years that have cut me and left me gutted. The way I wonder if those people spent even a second thinking before they spoke and wondering why I am always the one to turn the cheek. The one asked to have grace when so little seems to be afforded to me.

I tell myself its strength to realize they will very likely never have to do what i am doing every day and somehow ignore the crap. Most people don't raise their children, watch them take their first steps, say their first words, write their first letters, learn to ride a bike. Then turn around and tick those things back off the list as they lose those abilities. most people aren't living in fear of a global pandemic while they watch almost everyone moves on as if it couldn't kill your child. Most people aren't leaving facebook because it hurt to much seeing people you love support the policies you knew could hurt your child.

I feel like I am living on Mars, like just this completely different planet. My life seems so different from everyone I know. Just this relentless stress and fear.  There is a global pandemic and I'm like please stay home wear a mask lets protect the vulnerable like my child.  Family members call me a communist.  I don't even know what to do with that. I do know it was the end of that relationship.  I will never understand the people walking around without their masks on as if they have proven anything other then how much they suck.  Imagine being proud you are potentially hurting vulnerable people. Just stupid. I know I'm being harsh and I am completely cool with it. If you are completly cool risking my sons life why should I give a shit if you are mad at me?

I'm so tired of bending myself into a pretzel to try and make this easier for anyone else.  Its why I feel so alien. So different. I cant keep trying to make this pretty or easy so it doesn't hurt anyone, or annoy them, or make them call me names. But why doesn't anyone consider what it is like for us. Do I make it too easy? Am I too quiet for fear of being asked to be quiet? People always tell us how great it is that we make it work but it's not great. Its draining and hard and all anyone sees is the end results. You dont see how hard we work to get him in and out of a pool or lake or ocean you only see the pictures of us smiling. We are supposed to be happy all the time. Not just Shelby and I but our kids too. It's just a pressure none of us need but it's always there. "Why are you guys quiet?"  "Why can't you be happy?"  "Now isn't the time to be sad." None of this was a choice any of us made and sometimes we feel things in ways you can't because so are so damn lucky. You are lucky you didn't sit in that room and hear a doctor tell there is a 0% chance of survival. We did and we are doing the best we can. I wont pretend we are doing it perfect, we aren't, I'm just asking for a little empathy.

My kids will likely not be going back to school this fall. I just don't know how in the world we send any of them back because if one of us is exposed we will all be exposed. I hate the thought of any more digital schooling and homeschooling but i hate the thought of losing Robbie so much more. I know people will disagree but I mean does your kid have reduced lung function? I don't even know why I keep trying to share these things. What do I think is going happen. Suddenly people will my perspective and think "Wow, good point." Laughable.  People will likely roll their eyes call me emotional and go out to do whatever normal people do these days.

I live with a guilt most people will never understand. A pain I don't have enough words to adequately describe.  Robbie was growing in my body where he was supposed to be safe. We will never know what caused the cell to divide wrong. I know I didn't cause this, I know that it isn't my fault, but still I feel guilty. Guilty that i'm fine and he's not. Guilty I wanted a boy so bad. Guilty that I will likely outlive him. Its an anguish i wouldn't wish on  anyone even the assholes screaming about their freedom and endangering him now.  All I am saying is that if you give this virus to someone you love even unintentionally it will be a guilt that will make even your best days haunted.

Eye Doctor

13-year-old boys are not supposed to have cataracts. They aren't supposed to ask their moms if people like them can go to college and move out or have a job. They aren't supposed to say "I can't be a doctor when I'm older because I don't have the muscle control in my hand".   It's just not supposed to be like this.

I'm so tired of texting my family whatever the latest bad news is because I just can't say it out loud. I'm tired of feeling alone yet I'm too tired to not be alone.  I just don't have it in me to be okay when I'm not. To smile while I am crumbling. It's too much.

Cataracts? Because of the steroids that I know are making other things better but have robbed him and our family of so much. Now cataracts? Wtf? Things aren't hard enough? We aren't all stressed enough?

There were all these other families there. Just walking in picking out glasses and ordering contacts but we will never be those families. Sometimes I watch them and I wonder what is that like? Healthy walking kids.  I know that's not fair that we all have problems but  he is a child and he has to have a surgery old people have because the only way to keep him mobile is to pump him full of steroids. Actually, you know what not everyone's issues are the same as watching your child slowly lose function and control of every muscle in his damn body. When the medicine that might MIGHT give you a few more years with him is freaking hurting him.  And I am powerless.  I don't want to lose my son. I just want to know what its like to not grieve your child while you're raising them.

I'm running out of words that will comfort him.  It's not fair. Its stupid. There isn't a God because a God that would let this happen to a child has no place in my heart, in my home.  I'm so tired of smiling and nodding and pretending we are fine so no one thinks I'm emotional. My kid is dying I get to be emotional and scared. I get to be angry.  He gets to be angry and emotional too.

i'm tired of feeling like no one reads this. I'm tired of people only commenting if I put a feel good spin on it. I am so damn tired of spinning shit. My 13-year-old son spends 50% of his life in a wheelchair. He has cataracts. This shit sucks. It sucks. Its not pretty, I don't find faith here. I havent found a community. It's just me and Shelby and the girls holding it all together all the time and I am exhausted. We are exhausted. We just wanted to get him a pair of glassses so he could see the board.