A little piece of heaven

X-ray came back negative for pneumonia but they are going to admit him. He’s working too hard to breathe and sounds very junky so they want to observe him overnight. I’ll keep you guys posted. In the meantime, we really appreciate your prayers!

I spoke to Nathan’s doc who told me to call 911 and get him to ER. So we are at ER waiting for Nathan to be examined.

I think the single hardest thing for me about Nathan’s disability is The Worry.

Right now I am typing this with Nathan next to me receiving a breathing treatment. He had a terrible night at grandma’s, really struggling to breathe. I’m sitting here wondering, should I take him to the hospital? Why is he getting sick so repeatedly? Is he going to be okay?

So I worry. Is he aspirating? Does he have sleep apnea? If he gets sick, is his body strong enough to fight it? If I take him to the hospital, will they mess him up even more, like they did last time? Will there be a time when his health is better?

I worry about him. I worry about whether or not I make the right decisions.

I worry about his lungs, will they get better/stronger? Or are they going to get worse with time? I worry about his nutrition. Is he eating enough? Is he getting enough nutrients? Am I making things worse by not having him on a G-tube?

I look at pictures of him when he was younger. He looked slightly chubby, radiant, full of life. And it makes me sad. These days he is always pale, with dark circles under his eyes. He is skinny, so so skinny. And he is sick, always sick. Not horribly sick, but he’s always slight uncomfortable, always on the tail-end of a sickness or brewing a new one.

So I worry. And that is the hardest part of all this. Not the actual disability, not the lack of development, not the carrying or the physical caretaking. It’s the worry that gets me.

And now I better get back to the boy. Hope and pray that this one doesn’t put him in the hospital.