Our family is home. We are here with the compromise that we have oxygen for the boy in case his sleep apnea is problematic. He is not impressed and is, in fact, quite determined not to have anything blowing into his nose. This is one of many issues we have to work on in the interest of maintaining his well being.
We have discovered tonight that being home comes with many of its own challenges: learning to measure out medications, keeping track of what he is supposed to take when, getting him to take them at all (because most of them are quite disgusting). This is going to be a new kind of life for us. I won’t lie and say it’s easy. It’s not. However, it is what we have to do to help cure our son, so we will do everything it takes.
Any frustrations or fears we may have about all of this are trumped by the elation of seeing our son at home. He immediately became engrossed in his “work,” finding one task and then another that he needed to do. His legs are wobbly from twelve days of being in bed. In fact, he walks a bit like he did when he first started, but this didn’t stop him from wanting to help with making his dinner, examining his play kitchen, even toting around some favorite appliances.
This boy is so different from the Caemon we saw in the hospital. His spirits are lifted. He’s eating, and he’s drinking, and he’s laughing. Seeing this is good medicine for us all.