Misplaced Normal

After spending over a week at the hospital with Mark, we thought for sure that coming home would get us back to normal. After a couple of nights, things are still abnormal. We seem to have misplaced normal. I'd ask you to come and help us find it, but you'd be looking for something different.

Of course our normal hasn't really been misplaced, it has just morphed into something we don't recognize. Mark's room is now a noisy place. He seems to be wanting to talk so much. There are no words, but there is a constant flow of vocal expressions. He might actually be bored. His mind is clearer and so his normal has changed. There's more to think about, more to respond to.

Most of us spend most of our time keeping track of our normal. There's nothing more disconcerting than when our normal gets off-track. We use all of the standard navigating techniques. We keep our eye on things that we think are reliable, and then we measure and track the changes in distance between our current position and that fixed point. The beginning of September and the start of school will be one of those fixed points. Whether or not we have kids in school, this annual milestone keeps many people on track. Then after that there's Thanksgiving, Christmas, New Years and of course anniversaries and birthdays. There are career way points too. Each of us keeps track of how things should be and takes steps to stay between the lines, but what happens when life blurs the lines?

Lately, our life lines have become a little blurry. Many of our friends ask if there is anything they can do, and others wonder if we shouldn't just put Mark in some kind of institution. In the last century that is exactly what happened. In the century before that kids like Mark just died off before they became to much of a burden. Today they build hospital rooms that are designed to accommodate overnight guests. The doctors and nurses defer to the parents experience when it comes to care giving. The way we care for special needs kids has changed. The cost of caring is shared with the family, but we wouldn't have it any other way.

Mark is our little gift. He is our normal. All four of the adults living in this house adjust our normal navigation way points according to his needs. That's how we get where we're going. Without Mark in our lives, life would be easier, but we'd all end up somewhere different.

Like you I am going to work hard to protect the normal I've been given.

W