One year at home

I was looking through some of Isaac's old paperwork, trying to remember exactly what day he came home from the hospital. I did not find anything that definitively stated the date of his release, but I found a couple that were dated April 26th. So I'll go with that. In any case, this week marks the first anniversary of when Isaac came home after nearly two months in the hospital.

A lot of what has happened and the care Isaac needs has become more routine, more "normal" for us, however, there are still days that it seems so surreal. Earlier today, Aaron told me how it sometimes seems so strange to him that our son has a hole in his neck which we are required to push a tube into and essentially vacuum his boogers out of him. Even after doing it for over a year, that's a bit odd. It's something that we have to do multiple times a day, so it has become very normal for us, but it's never going to be "normal" for a three year old boy to have all that going on.

We talk regularly and casually with Isaac about his feeding tube and the "feeds" that he gets through it, his trach, suctioning, the spasms in his legs that are a symptom of his spinal cord injury, and his "big" hand (his left, which works a little better) and his "little" hand (the right, which is noticeably more difficult to use). We talk about all these things just as any other parents might talk to their preschooler about lunch, or if they have a runny nose. Or which hand they want to use to hold a fork or crayon.

We have begun to finally settle into some sort of "normal" routine. Not that there are not bumps in the road along the way. Since late January, we have spent most weeks with one or two nights where we had to stay up with Isaac because we did not have nurses to cover those shifts. That has definitely been difficult and not something we want to get used to, but most of the daily cares and routines have become exactly that-routine.

What a strange thing to think of as routine! While we have become accustomed to taking care of all the extra needs that Isaac has, the realization that this should really NOT feel normal is what weirds me out the most! My "normal" has had a definite shift. Have you ever been on a road trip and dozed off in the car? Whenever this happens to me, particularly at night, I wake up feeling disoriented and not knowing which direction we are driving. So when the sun comes up, I am once again able to orient my internal compass and recognize which direction I am headed. That feeling of seeing the sun come up in a place where I was not expecting is, for me, really similar to what I feel when I recognize how much normal has changed for me. Like the world is just a little bit askew for a minute, but at least now I know where I am going.