Shut up, hope.

My son has been "well" for the most part for at least two weeks. It's a strange feeling. I feel a nagging sense of hope down deep but I will not encourage it, or even acknowledge it very much. Any time when we've gone a month without hospitalization I start to feel this, and I hate it. I know that my son feels it as well. Tonight at bedtime he said, "I'm never going to get better, EVER," and the next minute he prayed, "Thank you for me getting better."

He knows the basics of what we know; that he has one pressing "kind of sick" that is causing him to be on so many medications and is also the primary cause of his dietary and fluid restrictions. He knows that is the sickness we're trying the hardest to make better. But he also knows that he has another kind of sickness that will be with him his whole life. I've tried to encourage the optimistic possibilities and tell him that maybe that "kind of sick" will be no big deal, that maybe he will just have to take a couple of kinds of medicine and that will be all. But I also try to be honest and tell him that no one knows right now what its effect will be. That uncertainty is miserable for me, and is stressful for him as well. But I am not the kind of parent who can lie to my child and tell him that everything will be fine, when it very well might not.

He was put on a new medication in a gelcap last week that was nearly impossible to mix into pudding like his crushed pills, and the liquid version was ten times more expensive than gelcaps. So I read up on teaching kids how to swallow pills, and we went for it.

My little guy is such a surprise sometimes. With something like jumping into a pool or lake or trying out a slide at a new park, he hems and haws and talks himself out of it. But he took to swallowing pills like a fish to water. He's now swallowing his pills two at a time, and is talking about trying to move up to three or four at a time soon. I'm so proud of him. At the same time, his new ability means he's drinking more fluids at meds time than he was previously, so I have to be a little more stringent with drinks throughout the day, but that is a small price to pay to be able to hand him one more thing he can control in regards to his diseases.

Now, what to do with the enormous quantity of pudding stashed in the pantry?