King Colon and Its Royal Subjects

1) Why don't you trade off so that Amy can come here or go there?

2) Why don't you just put Malachi on a schedule so that you can come to _____ or do ______?

1) Because this it what works for our family. It helps tremendously in maintaining order and continuity for the other children; they are important too and we do our best to make sure their needs are met and it's not all about Malachi. I am the home parent and Sam is the away Dad. There are many contributing factors, but the deciding one is that this is what feels best to us and prayer has confirmed it is right.

2) Because we can't. We have tried. He gets sick. He is sick enough without us causing it. He is healthy and thriving as long as his colon gets to dictate.

Have you ever tried to get something out of a kinked hose? You can't. The only way is to rectify the kink. Malachi's colon does not have a kink, but it has a shut off valve and there is nothing we can do to turn it on and off. Our job is to pay attention and make sure life is conducive to proper flow. 

Do you know how difficult it is to pay attention to the minutia when fully engaged in hustle, bustle, and every manner of busyness? Impossible. Our minutia isn't trivial, far from it, but it is very precise and the smallest thing out of place means bad things. 

People often wonder why we can't just put him on an irrigation schedule like a catheter for patients that can't urinate. We could, and we have, it doesn't make anything better. It doesn't free up time or make it easier to attend things. It does create busywork and misery for our little buddy. 

The nature of his disease is a spasm that does not let up. Some hear spasm and think spastic contracting and relaxing. That is not the case. It is spasming shut, always. In those opportune moments of relaxation relief comes and waste is allowed to exit the building. Whether he is able to poop on his own or we do an irrigation depends entirely upon myriad other factors. 

Sticking a tube in a shut off spigot is not productive. That is exactly what scheduled irrigations are; a futile effort. You start that way because it takes a while to learn your child's signs. When he is sick signs don't matter and you are in a constant state of irrigations to try and catch it. As you get better at reading the signs his health improves and things are not so volatile, but they can go that way quickly if vigilance is undervalued. 

The surgeries were supposed to fix the spasming. In scientific theory they did, we are in a holding pattern waiting for all the newly connected parts of his bowels to start getting along and functioning in a more predictable manner. 

Perhaps the trickiest part is keeping him nourished and hydrated. One never knows if he will be eating solid food, needing bottles only, or a combination of both. Some days it takes a full 24 hours of constant offering to get him the minimum fluid required for basic life sustaining hydration; 15 or so milliliters at a time. It is tedious but vital work. He is way to busy to drink a bottle if out and about. 

His ability to eat and remain hydrated is entirely dependent on how much room is available at the Inn. He didn't come with a gauge. He came with behaviors and patterns that we are experts on. Despite the lovely title, we still get it wrong sometimes. 

There are improvements and he has wonderful stretches where we think we are done and can put king colon's throne in storage. Every time we think we are there, our vigilance starts to wane and he ends up very sick. So far we haven't been able to step over the threshold of complete healing and wellness. 

Until then ...

We are loyal subjects and the king is happy.