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.