So we have been grieving for him.
He's already gone through so much in his long life, having had to deal with numerous consequences of choices he did not make. So we would love to just let him 'rest' for awhile. . .to have no new challenges for the foreseeable future.
Guess that is just not going to happen.
We went to his gastroenterologist today, expecting to be scheduled for a colostomy. We were ELATED to hear that, after all, he was not going to be having one. We were so relieved that we were positively giddy.
But then the doctor said the word: "Cecostomy."
And I had no idea what that was.
After all, we've thought we were heading toward one procedure for months. A colostomy is what I've been researching and coming to terms with for a very long time.
So to hear this new word, I was filled with a combination of dread (fear of the unknown?) and optimism (maybe it's not as scary as it sounds?!?). After all, the doctor's demeanor and countenance suggested this was at least a slightly more positive option than a full blown colostomy. Right?!?
I suppose in some ways, it is. But not in all ways.
A cecostomy is basically a small flexible tube that is permanently inserted into the colon, with one end outside the body. A 'trap door' flap closes the opening and is used once per day to admit a flush of various solutions to cleanse and empty the bowel. There is no 'bag' that needs to be worn or maintained and the tube and outside connection are smaller and less obtrusive than a regular colostomy. With one, our son can still participate in almost all of the normal activities a typical teenage boy enjoys, including swimming and most sports.
Though it's not quite as invasive and permanent as a colostomy, he'll still have it for at least 2 years. Overall, it will mean some freedoms he might not have had with a colostomy.
But we've discovered some significant down sides, too.
The one that will have the biggest long-term impact on our lives is that every morning, for about an hour and a half, he will be in the bathroom completing a lengthy flushing procedure. Every. Single. Day. For at least the next two years.
And that's on top of everything else. Which is, to be brutally honest, already a lot.
I think I'd like to have a great big cry, but, unfortunately, there isn't time.
We have another hill to climb.
(photo courtesy of publicdomainpictures.net and can be found here)