Dammed if you do, damned if you don’t. I can start my own IV. Pack and unpack my wounds. Irrigate and try to unclog my own small intestine. I can do a lot of hard, gross medical stuff. I couldn’t a long time ago, not at first, but I had to learn how to deal with the chronic and post-surgical crap. When it didn’t all go away. Because I didn’t want to keep needing others, partly because it’s hard to be strong sometimes. And it’s embarrassing. It’s a tricky art predicting and accounting for the feelings of those you love so much. It’s hard to be the reason they’re sad, frustrated or pissed. It’s hard to carry the weight or handle their sympathetic reactions when you’re feeling pretty weighed down. You know it hurts them. To see you sick, and not yourself. Laying down. Not laughing, and sometimes with the tubes coming out everywhere. Filling bags with fluids.

I can get inside my own head most times and work things out with this disease and God. But it’s hard to work things out for good inside the heads of those who want to take it all away. Make it disappear. Who would take on the shit for a day. A week. Or even longer, maybe even forever, to give me a break. Though I would never let them. I love them too much. And I’ve gotten to be pretty good at dealing with hard stuff. I know that it’s shaped me for better too. Most days.

I was trying to play soccer with my boys today. On an unseasonably warm December day. I was hurting. But we were having so much fun. Laughing. High fiving each other, up-high and down-low. My boys’ ecstatic reaction to my unexpected backwards kick into the goal made me feel like a soccer magician. Even though I’m not. The sun began setting, painting the sky a million shades of beautiful. I made my boys pose for a picture because it was unbelievably spectacular. Maybe I would want this picture, this memory captured of the fun we had. And the Kansas sunsets behind 69 Hiway are just the best.

My boys begged to stay. “Please.” Times three. I didn’t want to leave. I was hurting pretty bad when I ran. I told them we needed to walk home so I could go to the bathroom. They asked why I couldn’t just go in the woods like them. My best response was, “it’s not that easy. I don’t have a penis.” It kind of worked, along with the promise of a drink and snacks. My kids will play forever without food or a drink if they’re having a good time. They have some secret energy reserve or an auto-pilot play mode switch in their brains.

When you’ve been the center of unwanted attention or altered other’s plans too many times because of a disease you didn’t ask for, you try to tough things out. Grin and bear it. Or just get silent and focus on others around you. Until the pain gets better or gets to be too much. You don’t want to be short-fused or unkind like a hurt animal, growling or snapping to protect yourself. You just want to feel normal. You just want others to know how to shake up the perfect magic cocktail of sympathy, positivity, strength and compassion. With maybe a squeeze of resilience. And add some humor around the rim of the glass. It’s a tough order to fill.

Tonight, I hurt. I couldn’t get past it. I wanted to help put my boys to bed. All of them. I wanted to because I’m worried. I fear that I may have to vanish to the hospital in the night. When I’m feeling this way. Ironically, in these moments, I crave the simple, the things that on other days can seem exhausting and irritating. Same ole. Bedtime rituals. Boys fighting over who gets to sit next to me on this side and that. Whose book I will read first. After they brush their teeth. “Have you brushed your teeth, yet?” The little, yet meaningful and habitual love expressions that my boys spill. All over the place. For me, their humbled and grateful hurting mama.

I’m worried because it’s not a good time to go to the hospital. I have to help with a preschool cookie party tomorrow. And our house is a complete disaster from redoing our floors. Man. Oh man. There’s SO much laundry. SO much. And the toilets aren’t clean.

That’s one of the hardest things about chronic illness. It doesn’t seem to ever strike at a “good time.” Because there never is a good time. It’s always the untimely and uninvited house guest. Knock. Knock. Barge in. There’s never a good time to be separated from your family by an illness and the distance to the nearest hospital. There’s never a good time to miss out on any precious moments that you didn’t choose to miss out on. No matter how big or small. There’s never a good time to have an NG tube shoved up your nose and down your throat. If I could put one down myself I would. I think my gag reflex is too strong. And I’m too weak. There are things that I just can’t do. Maybe one of my nursing friends could teach my husband how to do it. Then, I wouldn’t have to lay here wondering if I need one. Or if I need to go to the hospital. If I start throwing up.

I cleaned the toilet in case I need to throw up in it. I even put some eucalyptus oil. I started a load of the boys laundry. It’s my way of jinxing a trip to the hospital. It makes me feel a little better that they may have some pants to wear to school in the morning. They just have to be moved to the dryer.

Hopefully, I will be there to help get them ready for school. And I will have a different attitude than I did yesterday. An “I get to….”do it instead of a “I have to….” do it attitude. After all, I could be sitting in a hospital room longing to be home. No matter what this disease takes away, I want it to know that it always gives me more. It helps me see what matters. Often, right in front of my face. And most of the time, it pushes me to appreciate and cherish, not complain about the routine. Habitual. Because really its the best, the most important. The simple and beautifully boring things that most days I have the privelege of doing.