I am fortunate enough to be mom to two of the most beautiful and wonderful boys in the world. Ok, so maybe I'm a little biased in my view, but my boys are definitely the coolest thing in my part of the universe and I love being their mom. Sometimes its a challenge when I'm having a bad UC day. What I really hadn't thought about too much was how this illness effects them overall.
My youngest is not quite seven months old, so I don't think there is much impact for him at this point. He loves snuggling up in bed with Mommy, so even my bad days aren't too much of a burden on him. Probably the only negative experience for him is when I have to quickly stick him in his crib (especially if he was in the middle of a feeding!) so I can run into the bathroom. I've spent a few days like that with him crying in the crib and me trying to console him from the bathroom letting him know I'd be right there as soon as I could. Not fun, but probably not anything that will stick with him later on.
My oldest is almost four years old. He's seen me in pretty bad shape. I can remember when they wanted me to try an iron supplement and I reacted very poorly to it. The result was an extremely painful flare up that had me laying on the bathroom floor crying, sweating, and moaning until I finally puked up everything I'd eaten in the previous year (at least that's what it felt like). It was just my boy and I at home that morning, and I remember him being really scared. I tried to hold myself together as much as I could, but the pain was just too much. He was so sweet patting me and hugging me and telling me it was ok. When I finally threw up, he cheerfully told me I would feel better now. We spent the morning snuggled up on the couch watching cartoons and he just wanted to stay next to me the whole time.
I try not to let him know when I don't feel good because he worries and I don't want him to feel uncertainty. Sometimes it can't be helped though. There are plenty of mornings where his getting ready for school routine is conducted with me sitting on the toilet and him bringing me his clothes so I can help him dress, etc. He knows sometimes my belly hurts and I'm tired and need lots of naps. I've never really tried to explain UC to him though because I wasn't really sure how to do it.
A few days ago I started talking to him about Mommy going to the hospital. I wanted him to have time to digest this news and ask me any questions he might have. At first there was just a lot of "Are you going to the hospital now?" followed by my reminding him how many more days were left before I go. We would go over what is going to happen and that his grandma is going to come take care of him. I thought he was taking it all pretty well and he really didn't seem to have any questions. Then I picked him up from preschool yesterday.
The teacher handed me an orange paper with a disciplinary report written out on it. I knew immediately what the orange meant as it was all laid out in the parent handbook. I also remember reading about this process and feeling certain I'd never see one of those papers. Ha! Joke's on me! At any rate, apparently my sweet boy has been freaking out at school the last few days which culminated in him kicking, hitting, and screaming at a teacher in the nap room yesterday. This kind of thing is entirely not like him and as the director and I were discussing what on earth could have gotten into my typically mild mannered young man it struck me....he's more upset about this hospital thing than he is letting on. He just doesn't know how to talk about it. I made the decision to share the news of my upcoming surgery with them and they agreed it probably had a lot to do with it. I decided I needed to be more proactive in talking with him about what was happening and why.
It's always tricky trying to explain something like illness and surgery to a child of this age. I didn't want to make it sound too scary, but I wanted to be as honest as I could so he would understand. As I was trying to figure out the best way to go about about this, I remembered a book he got for Christmas called The Gas We Pass. There is a pretty good kid friendly drawing in this book that shows the digestive system and how food passes through it. I got the book out and showed him the drawing and pointed out the large intestine. I told him that part of my body was really sick and the doctor at the hospital was going to do an operation to take it out and make me better. He actually got kind of excited and said, "They are going to take the sick part out of your belly! Cool!" We talked about how right now with that sick part in there my belly hurts a lot and I have "mean poops" (his own terminology for diarrhea) a lot of the time. I told him when they took the sick part out it would fix that. I decided to take this opportunity to explain the ostomy bag to him, too. It took a couple of tries to convince him that I wasn't going to poop out of my bottom anymore, but into a bag on my belly. He actually thought it was hilarious that farts would come out into the bag, too. He wanted to know if we could pour the farts in a bottle to keep them! I told him that probably wouldn't work too well.
Then he looked up at me with those big brown eyes and asked me, "Mommy, what will the bag on your belly look like?" I had actually been waiting for this question and I asked him if he wanted to see a picture of one on the internet. He said he did. I went to Facebook, pulled up the Uncover Ostomy photo page, and showed him some pictures of women with their ostomy bags. I steered clear of the post-op pics there and focused on the others. There are some great pictures there of people looking proud and happy with their ostomies. He actually said it was kind of neat and we talked about it some more. I pointed to the area on my belly where mine will likely be. At the end of our talk I told him he can ask me any questions he wants about the hospital and my operation and we will talk about it. I also promised him that I will say goodbye to him before I leave for the hospital. I think he was nervous that he would go to school and come home and I would be gone. I am hoping all of these things help settle this in his mind somewhat, but I'm prepared to keep repeating and explaining if I have to.
My husband and I talked about whether or not I would show my older son the stoma. Right now I'm not showing him stoma pictures because I don't want him to be frightened by how they look. I plan to wear a solid bag (versus clear) so he won't be seeing it in the normal course of things. I kept going back and forth over whether I should show it to him once I'm home from the hospital. It's not that I want to hide it, but I'm not sure it's necessary either. Finally my husband said, "Well, you wouldn't go out of your way to show him your butt, right?" That made sense to me. My current thoughts on this are that I am not going to make a special effort to show him the stoma but, if he is around when I am changing the bag or something and wants to see it, I will let him look and answer his questions. I think that's a good place to be right now.