Since then we've been through the best and the worst of it. I'll start with the worst, because then I can end on a positive note.
The Worst
Last night I had to change Kyrie's colostomy bag. I was thinking I would have until probably Thursday. The Ostomy Nurse changed it Monday in the hospital, and it was awful. Like horrifically awful. David and I had to hold him down while she did it, so that was a great peek into what our next two months would be like. Thrilling. I am not sure that removing the adhesive is all that painful, more uncomfortable. He is just terrified.
Then again, I've never had to remove a colostomy bag with extra adhesive tape around the adhesive that comes with the colostomy bag. So what do I know.
Anyway, I thought I had a little time. We had a home visit nurse come, and she was going to come back to check in after I changed it. My cousin is a nurse, and she offered to help me when the time came. I felt super comfortable with the whole process, besides the torturing my child part. Because how do you prepare for that?
Anyway, Tuesday night rolls along and the boys are supposed to be laying in my bed watching TV while I put Ezra to bed. I come back into the room to see Kingston on top of Kyrie's stomach (NO!) and Kyrie crying in pain. Oh brother. Poor Kingston was just being a four year old boy, and he wasn't even being super rough. But poor Kyrie is recovering from surgery and has a very sensitive tummy right now because of it. And this led to me having to change the colostomy bag. The nurse said at any sign of a leak, I needed to just change it, and not try to reseal or anything. And did I mention that David was at a board meeting? So I was running solo?
So I get all my stuff, and Kyrie starts crying before I even begin. I went super slow with the adhesive, and used these adhesive wipes. But there were still hysterics. Being four, he's still working on sharing his feelings, but he is SUCH an expressive little boy. He was shouting lots of things at me. And I know he was just hurting and scared and didn't know how to communicate that. Or actually he did. He communicated it quite well. "MOM YOU ARE NOT DOING A VERY GOOD JOB! MOM YOU ARE HURTING MY FEELINGS! NO! NO! MOM! NO! DON'T PEEL IT! STOP IT! STOP IT! STOP IT! I DON'T WANT YOU TO DO THAT TO ME!"
Kingston didn't know what do think. I have no idea if Ezra slept through it because I wouldn't have heard him crying over Kyrie. With bargaining, distracting, holding down of limbs, trying it quick, trying it slow, trying to just be stern, nothing helped. And what should take 10 minutes, tops, took me about an hour. Maybe more. David came home at the very end and got Kingston into bed while I finished up with Kyrie. As I put Kyrie into bed, he said in the tiniest voice ever, "mommy, will you lay with me forever?"
As I held him there, I couldn't hold the tears back any longer. As they silently streamed down my face, Kyrie talked through his feelings. "Mommy, I didn't like that. You can never do that again, okay mommy? Don't change my stoma bag anymore. Okay mommy?" What could I say? I have to do that a couple times a week for the next two months at least. I just squeezed him close and told him I loved him and told him I did my best and I'm so sorry it hurt. "No, mommy. You did not do your best."
Oh my sweet boy. I love you so much and I promise we will get through this together. I promise there will come a day when you never think about me pulling ouchy tape off your skin and I promise these days will be history one day. I hope to tell you about it as an adult and have you not remember any of it. I promise all this to you because I need to hear that promise for myself too. We can do this. I promise we can.
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And now I'll save the good for tomorrow. I'm emotionally drained living through that again. And I've used up my limit of quiet time while Ezra naps. Kingston and Kyrie are ready to be wild again while I tell them to settle down, and be careful, and watch out for Kyrie's tummy, and stop that, and be gentle, and no jumping off the couch into a pile of pillows.
I know this post was a bit of a downer. But I promise there is also SO MUCH good going on here. Lots to write about that is positive. I promise to share that tomorrow. This is our one huge hurdle right now, but the rest is truly going wonderfully. Thank you again for your thoughts and prayers!!
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