Maybe I should make her have the feeding tube all the time.
Maybe being able to eat all her food and all her snacks and actually get most of it swallowed isn’t enough.
But for us, its miraculous. Really.
And so when this six year old in the body of a two year old tells me she doesn’t want the feeding tube “because I can get it down”, and tries so hard to eat, then we give her that freedom if she really can swallow some of it.
Sometimes she can’t.
Sometimes she just tastes her food, and then spits it back out in my hand like a bird.
Then we have to use the feeding tube, whether or not she would prefer not to use it.
Or sometimes she can eat her food, but can’t swallow her drinks without drowning, and then we have to use it (and flush it with water, which is part of using it anyway).
But we have come so far, and we have come so close!
But I’m not worried about her not being on the chart.
Because she is taller.
Except for, you know, the being two part. But mostly happy. We are trying.
It’s a fine line, though, and there is always mom guilt. Maybe she would have hit the chart if I hadn’t stopped the feeding tube. I’m sure it’s my fault, because I’m the mom, right?
Or maybe it’s not about failing by a few dots.
Maybe it’s about that upward line, and everything counts as progress.
That’s the hope we all need, I think, that instead of doomed to failure because of this or that, we ought to zoom out and see the big picture of progress.
And instead of despairing because of a hard moment, or being overwhelmed by little things, maybe we just need to take a big Kyrie breath and recognize how far we have come – and be content, that it’s enough, for today, and enjoy the lines of life that we have been given between the dots.