Do not take your family to the science museum on the Friday between Christmas and New Year’s during the rainiest week yet of the winter. While it was clear that everybody had the same idea to do something indoors with their kids (and all their pent-up holiday energy), I wonder if any other families used the trip as the dangling carrot: “I tell you what, kids, you hang out patiently in the waiting area during your baby brother’s appointment and we’ll all go to OMSI after.” woot woot! Although that’s a little misleading, because the girl and the boy would be patient and helpful, implied reward or not (and, honestly, my daughter was less than thrilled with the final destination).  But it was something to look forward to when we woke them up early and slogged the hour drive into the city. We’ve managed to only take them along to a few appointments, and truly they would have preferred to stay home, but we thought we’d make a day of it. It seemed like a good idea at the time.

And it IS good, being all together. I just haven’t had much practice at this Mother of Deformed Baby gig, you know, and it’s tough.

So the appointment. We determined that we do have another thing to worry about. Ulysses does not have a cataract, yay! There’s a chance he might require a cornea transplant, opposite of yay. We’re holding tight now, secure in the definite knowledge that he CAN, indeed, see out of both of his eyes. One eye presents normally, the other is problematic, to a degree that is tricky to ascertain in a seven week old. “Like looking through a cloudy window,” we were told. But how cloudy? We will go back soon (and frequently, indefinitely, thereafter).

I know my mama instinct is working because I wanted to slug the doctor in the nose for having to pry my tiny baby’s eyes open. The pediatric ophthalmologist was actually incredibly kind and patient and helpful and I wisely sat across the room and did not impede the examinations at all. I’ve been scrutinizing my reactions as much as I’ve been scrutinizing my baby. I know there was a disconnect directly after his birth. He was swept away; I was still grieving his loss. But I love my new son and there is no doubt that for all the abnormal circumstances surrounding his short life so far, my need to protect him and keep him safe is very, very normal. But you don’t spend a week thinking your baby’s going to die and not have that affect how you feel when he doesn’t.

Today is the first time we took him out in public. He’s been in waiting rooms plenty, but today was his first restaurant visit, his first outing in a busy place. He slept through both, snug in the pouch sling, and I jostled and bounced him through the crowd. While the husband trailed the six year old, ms. almost-thirteen years old coolly surveyed everything and kept track of her reflection and the jaunty perch of her plaid fedora. I had lots of time to observe some things. If you find yourself anyplace where great gobs of children are present, you might see so many animal face hats. I didn’t have my own camera (phone had died, dslr left home) or I would have snagged pics to confirm the overwhelming abundance of animal hats. Not just your pseudo-indie knitted sorts, like earflaps with kitty ears. No, I’m talking full on fluffy fake fur faux taxidermied wild animal heads. Lots and lots of them. It’s possible this is not a new trend. I haven’t been out much lately.

You know what else you see where there are lots of kids? Hands. And feet. The ordinary has become triggering to me. It’s not all consuming. I notice and think about other things, too. But, I do flinch some when I see little dimpled hands, when I see wobbly babies taking new steps. I have a son with hands that do not look like hands. I have a son with nominal feet we will have to amputate if we hope for him to walk. (I forgot to ask the orthopedic surgeon what do they do with amputated baby feet.) There are so many hands and feet.

When he’s tucked up next to me, we pass as any mother and baby (you know, if any mother babywears like a boss and any baby has such an adorable nose). We don’t attract attention, and no one even blinks if his sleeve is pulled down over his fingers. But the more he moves about, the less he naps all day, our cover gets blown and I’ll have to confront the public part of of being in public, instead of just the inner sad part. I’m thinking of that Plato quote: Be kind, for everyone you meet is fighting a hard battle and I want everyone to abide by it, even as I’m not sure I believe it. I’ve always been an everyone, but my battle wasn’t nearly as hard before. And the hardest part is that this isn’t even my battle, but my baby boy’s. My heartbreak belongs to his body. My gladness comes from his being. My purpose isn’t clear, who knows why anything happens the way that it does, but I intend to keep at it. Sweet, sweet boy. I’ll do whatever it takes for you.


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