And Now We Wait ...

If it worked and will help, we should start to see results very soon. So far, some gas and a stain, that's more than we've had in about 3 weeks. We shall see.

In our post-op discussion today, Dr. Aiken said something that clicked for me. Hirschsprung's patients never have 100% colon function. The operation we give them will allow them to have somewhere in the range of 85 - 95% function, which for most cases is enough. But, they still never have full function." Each case is different and Malachi is throwing every possible curve-ball, and then some, into the mix. There are still options on the table for Malachi. He will never be done with Hirschsprung's.

Since the beginning of this journey, some nearly 6 months ago, there has always been this idea of an end point. A point where Malachi would be 'normal' and we could resume our life as 'normal' and never look back. At first, we bought in. We are no longer there, and haven't been for sometime now. I am not sure that I have been communicating it very well. Everything from diet to sleep patterns effect the digestive system. If you think about it, life is pretty miserable with a messed up gut. You've got to eat to live. You've got to poop to eat. If you can't do that then there aint no sense puttin' anything in.

Think of it this way; if your colon was full and you needed to use the restroom, how would you like it if someone said to you, "Sorry Charlie, you are going to have to wait until your digestive systems starts backing up and you start throwing up bile, then we'll get you taken care of."

For Malachi the backing up doesn't take so long at all. He's pretty much always backed up, it's just a matter of getting him through the burps, spit up, and discomfort, until things move along far enough that an irrigation will help. He has reached a point where he is spitting up enough that he is not gaining weight like he needs to and he can't consume enough to make up for it. He's got reserves, the Lord blessed him with that at birth. He's got dedicated parents who keep him upright and dutifully clean up barf all day and night long. He's got siblings that care about his well-being more than what they may or may not be 'missing'. We've got people that think of us. And mostly, we've got the Lord who understands it all.

Malachi's digestive system is extremely dependent upon being able to sleep and eat according to his own body's schedule, which is different everyday. There is no way to plan around it, work around it, or pretend it's not going to affect things. There is only living with it and working with it. We do the best we can and we are blessed with everything we need to live a peaceful, joyful, and fulfilling life. And, there are wonderful people that don't help us, but rather, are with us.

We live in a society where everything is fixable. This idea creates an impatience that can actually hinder the healing process. We are striving everyday to do the best things we can while also carefully listening to what this disease is giving us ears to hear.

Perhaps when the body fails, it's trying to tell us something. Perhaps there are opportunities all around that offer a space to see through all the confusion and chaos surrounding us. Perhaps the point is not to resume where one once was. Perhaps the point is not to be 'normal'. Perhaps there is a different plane on which to resume. Perhaps the point is not to be what we were, but who we are now. Perhaps.

A dear friend that is a breast cancer surviver said to me, "Amy, you have to find your new normal." I am working on it, every minute of every day.