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.

I am sitting in my car, typing this on my ipod. So it might have typos. Not sure how much I care about that right now. Am tired. I just want to get away from life right now. I'm trying ro have some optimism about things getting better. We might have a new nurse for Isaac soon. Assuming this one's background. Comes back clear. Aparently she's got some pretty impressive experience, so that's good. It's hard to be hopeful when things have not worked out the last time we thought we had someone. And even if she does work out, I don't know how soon it will be. She haa to go up north dor some training or something and then come train with the current nurses for a couple nights. i am just rirwd of waiting though . I need a break now, not in rwo weeks. You know? I just feel so ceippled and trapped by life eight now. And I don't know how to change it. i am just trying to wait it out, which is not working well. I mean, I'll get there one way or another, i just know I can't handle anything else today. So I'm sitting in the car, being away from that life inside. Maybe if I am lucky, the kids will be asleep by the time my ipod battery dies, which will be soon. It just popped up a low batterey thing at me.
I am feeling in need of some major recharging myself. There just has not been much opportunity to do so lately. I guess I'm a little like my ipod. Only more emotional. The ipod does not cry when it's low on power. It just blinks that little box at me every minute or so until I plug it in. I think I need a sign I can wear around when my battery is low. Help me find a power scource before I pass out from exhaustion.

That would be good.

Then I need an extra long power cable so I can still get something done while recharging.

And some dinner. I think I should go have some dinner. That might help.

Sorry for the depressed rambling. Guess I will go give my ipod a recharge and see if there is one for me too.