The Worry

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.


  1. Carrie Williams says

    I’m so sorry Nathan is ill again. The worry is something we can all relate to. I have no magical words for you, but I will say that I will pray for Nathan, and pray for peace for you.

  2. I hope Nathan kicks his sickness to the curb quickly! In the meantime he will be in our prayers.

    Just wondering about his sickness. Emma is so so skinny, too, and whenever she gets sick it seems to put her down for a bit. I’ve found that taking long blocks of breaks from therapies keeps her feeling good longer. Have you seen a difference with Nathan during the times you took a break from therapy – is he less sick, less black circles under his eyes? I know our children are very different, but just wanted to throw that out to you since I’ve found that a long break when Emma isn’t feeling great coupled with extra sleep and relaxation seems to keep her bouts with sickness at bay.

  3. The ups and downs are so hard. I hope an early spring brings good health & good times to Nathan and your family as whole. Hugs & strength!

  4. please keep us updated. nathan is such a sweet heart. we are probably going to give in soon and get elliott a g,j tube, because he is getting so skinny too and is so fragile because of it i think. you know when the right time is as a always fight so hard for him you are a great mom. hope he feels better soon.

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