Our Lovely Summer Begins

I got in "trouble" for saying that our summer is going to stink because of all of Tabitha's contraptions . . . the no swimming, no bike riding, and having to deal with poop and urine bags wherever we go.  Someone told me I should instead look at all the fun stuff we CAN do besides swimming and bike riding.  My philosophy is I'd rather assume it's going to stink and be pleasantly surprised, than to act like everything's fine and be upset when it turns out awful.  So call me a pessimist, but I'm sticking with my "this summer's going to stink" philosophy.  After all, if you expect the glass to be empty and it turns out only half empty that's a good thing.  If you expect it to be full, you'll be mad when it's not.

So anyway, today's our first day of summer break, having finished school on Friday.  Here's how it began:

Tabitha's bag (which was newly put on yesterday) was showing signs of coming off around the edges, so I retaped all that, hoping it'll hold a little longer.  (If we change to too often it could damage her skin.)  Oh, the reason it was a new bag from yesterday is that we had put on a new bag Saturday night, but unfortunately it had released its contents overnight, so Sunday morning we woke up to a daughter and her bed that were covered in those contents.  Cleaned up, put on new bag, off to church, no further incidents.

This morning one of my dear sons (who shall rename nameless) refused to get out of bed so we could proceed with our fun summer plans for today, and we had a wonderful time of, shall we say, character building exercises between him and me.  Meanwhile, while he was having some alone time to work on his attitude, I was helping the other two do their chores.  Tabitha finished brushing her teeth, and leaned against the edge of the counter top to wipe off the sink, the pressure causing the velcro closure on her ostomy bag to burst apart.  The contents were all liquid today and proceeded to skip over her clothes entirely, but made a huge puddle on the floor and splatters all over the walls, cabinet, and me.  It would've been funny if it weren't so nasty.  So I cleaned that up, went back to dealing with aforementioned attitude problem, and then proceeded to Tabitha's regular morning routine.  I got that all finished, my beloved son had a shiny new attitude, and I thought, "OK, we're good now.  Let's get ready for our outing to the park."

While I was still in the house and the kids were playing outside, Ethan and Tabitha came running in saying her bag popped.  I looked down, and the urine bag was empty, and her shoes and pant legs were drenched.  It didn't actually pop, but it had a leak in the seam.  Back to her bedroom, another change of clothes, clean up, put on new bag, resume life.  And at this point it wasn't even 10 in the morning.  At this rate it's going to be a LOOOONG summer.

We've already had to turn down 3 swimming invitations because it's sort of cruel to go to someone's house to swim and make Tabitha sit and watch.  And every time we leave the house I'm nervous something's going to leak or explode.  What supplies should I bring?  How many outfits?  What do I dress her in so the world isn't gawking at the bodily waste hanging off of her?  Is it even worth leaving the house?  I guess the experienced parents who said the ostomy is no big deal either had a very different experience than we're having, or have a very different definition of "no big deal."

Oh the good news....we started dilations on Friday.  That's where we stick a metal tube up her butt to make sure it's not healing shut.  Well, it doesn't hurt her at all, which we're very thankful about.  (See...look at me seeing that glass half full!)

I'm actually doing pretty well emotionally.  I'm not feeling overwhelmed or angry anymore, I'm just kind of resigned to this being our life for awhile.  I fully intend to make the most of this summer.  I'm not going to wallow in misery or anything.  But when I say that having to deal with these things all summer is going to stink, I think I'm right.  Anyone who disagrees is welcome to come takeover.  =)