Being a mom with a chronic illness.

Every night before she goes to sleep, I have to tell R three stories.

The first is the "pony story" where R-pony and her pony friends rescue Hank-the-dragon after he's run away.

The second is the "pirate story" where R-the-pirate and her pirate friends rescue Hank-the-octopus after Captain Hook takes him.

The third story came about a few weeks ago, and R calls it the "hospital story." In it the mama-pony has to go to the hospital because she's sick, and the pony doctors cut her tummy open. Then she comes home and is all better and tells R-pony how much she loves her.

The other day my mother-in-law told me R was playing with some toy fish and was pretending one of them was going to the hospital to get it's own tummy cut open. Apparently there were a lot of "I love you's" involved.

Although I wanted R to know the reason why I had to leave her to go to the hospital, and the reason why there's a big scar on my belly and why she needs to be careful with me, I never wanted her to have to experience my illness like this. I never wanted it to be a part of her life.

I can only remember my mom crying a few times while I was growing up- and most of those times came in high school and my behavior was the reason for her tears. But I never remember her being sick, and I never remember her being weak. To me she was strong and invincible, the way many moms appear to their kids.

But I won't be that kind of mom. I've tried to hide my sickness from R. I've tried to put on a brave face and cry only after she's gone to bed, but this year with the deterioration of my stomach condition that's become harder and harder to do. And I've broken down around her more times than I can count, more times than she's ever deserved to see me cry.

When I'm feeling my worst I like to lay in the bathroom because the toilet is right there. It's not a comfortable place to lay- especially since my body is longer than the bathroom itself and maybe 1/3 of its width- but it makes me feel better to know that if worse comes to worse and I throw up, that I'll be right there. It's an anxiety thing.

I did a lot of laying in the bathroom for the first couple months of this year while I weaned off one psychiatric medication in order to wean onto another. Doing that exacerbated my Gastroparesis to the point where I could barely function physically, and mentally/ emotionally I was almost pushed to my breaking point.

I made sure R was fed, clothed, and happy. She never wanted for anything, but she could have had more and I couldn't give it to her. A lot of cartoons were watched, and a lot of Easy Mac was eaten. She saw me sit in the bathroom, and she saw me cry a lot of tears. I'd wait all week for Saturday night (the beginning of our weekend), and panic every Monday night.

Things have gotten better, but not completely.

Yesterday was Mother's Day, and from the moment I woke up I knew it was going to be a difficult day for my stomach. I could feel myself refluxing bile (something that's been happening since my surgery) and I was very nauseous. I almost couldn't make it to the lunch we had planned with my mother-in-law, but I took my nausea meds and tried to put on a calm face.

When we got home I napped, and when I woke up in was in a cold sweat- I couldn't stop shaking. And R was there to comfort me. She wiped tears from my eyes, rubbed my arm, and told me her renditions of the bedtime stories. She told me to close my eyes and rest, to N to whisper when he was talking, and told me that it'd all be ok. That I'd feel better soon.

And that just made me cry more. She is such a sensitive, caring little girl. Even if her favorite thing to do is "body slam" and play with monster trucks.

There's a lot of stigma surrounding being a mother with a chronic illness- especially if that illness is psychiatric (a topic for another day), and especially if motherhood was planned. It's a stigma I want to fight, but it's something I also feel a tremendous amount of guilt about. This is not the mother I wanted to be, this is not the way I want R to remember me, this is not the childhood I wanted for her. I'm not saying I don't believe things will ever get better, but I know that they will wax and wane for the rest of my life.

Every day I try and put on a brave face for R's sake, and some days I am better at it than others. I don't strive for perfection because I know perfection is impossible, but I strive for giving R what she deserves in life- which is a hell of a lot. I am proactive about my health not just for my sake, but for R's sake. I want to feel better for her.

I wish this had come to a neater conclusion, that's what I had planned. What I want is to not feel guilty about being sick and being a mom, because I want other moms who are sick to not feel guilty. But things are still too fresh right now, so you're going to have to take this for what it is- a confession and a promise of hope. Because I'm still working at this whole motherhood thing, and we're doing it on a day-by-day basis.