·  Normal is a dryer setting.


Understanding skin physiology

Understanding your child’s physiology – special needs or not – is crucial to understanding not only their current condition, but what might affect changes in them as well. Namine’s skin in particular, which we don’t discuss too much, is definitely worth bringing up here. We don’t talk a whole lot about Namine’s skin because, frankly, there are larger issues – her heart, her airway, her legs – but we would be fools to ignore any aspect of our child. We would be poor, poor parents if we didn’t consider every bit of her as important as the rest.

Coincidence or providence?

Instead of doing one of those “year in review” posts, I’m going to talk about something else. Often, when we tell Namine’s story, the response is pity of some kind. Another common response is “why?” Why should Namine have to suffer these things? What did she do to deserve such a life? What did we do to cause her such a beginning? Or is she merely the victim of random happenstance, the living evidence of life’s cruel injustices? I suggest a third alternative: Namine did not just happen to take this shape; but she was made this way. To put it perhaps a different way, she was designed, with such precision and deliberation that this is how she was meant to be.

Getting her stitches out

Yesterday Namine had an appointment with ENT to get the stitches in her neck removed. Jess took her to the clinic building, not the hospital. Namine is old enough that we can tell her what’s going on; sometimes she handles it well, and sometimes not. Well, this was a not day. I think the recent business with her feet has made her more afraid of doctors.

Foot surgery: two down

I’m going to try to keep this short, because I’m typing this from my phone. Anyway, Namine’s foot surgery is done, and seems to have gone well. I don’t actually know what all was done, because I haven’t had the chance to speak with any ortho docs. Both of Namine’s feet (especially the left) appear…


The main problem with becoming a parent is the lack of instruction manual. It’s worse with a child who has special needs – no two children are the same, and even with something more common like autism, one parent’s methods are not going to be the same as another’s. With something much rarer like caudal regression, you can find the medical information you need easily enough – thank you, Internet – but finding other parents who’ve taken care of an afflicted child is not difficult, it’s nigh impossible.

Foot surgery today: post-op

Namine came out of surgery at 3:30, but of course spending time with her is more important. I’m heating up some dinner in the parents’ lounge now, so I should have enough time to give you all an update. So Namine’s foot surgery is done. Unfortunately, Namine’s feet did not tolerate being completely rotated into…