I couldn’t even type the title of this post without my eyes filling up with tears.  The heart stuff is big and scary and looming, but my main fear and focus over the last month or so has been Kiran’s vision.

Surprised?  Yes.  I have held this one pretty close to the vest.  I’m not sure why, but I have been reluctant to be as transparent about this worry as I have been about all the others.  But this afternoon, as I lay next to Kiran trying to obtain some sort of visual reaction out of him, I feel like I am bursting with it all.  This always means it is time for me to write about it.

His vision wasn’t even on my radar for probably the first month and a half or so of his life.  I had so many other worries, and I knew a newborn’s vision wasn’t all that great.  I wasn’t seeing anything that concerned me – I wasn’t necessarily doing all that much to promote it either.  I hate that.  It gives me fodder to blame myself.  But how could I do anything?  So much of that first period of time, after bringing him home from the hospital, was about pure survival and not much else.  Hell, even now, three months into it, most days feel like that’s about all I can muster.  We are starting to find a rhythm, but I still don’t shower every day.

I don’t remember exactly when I started being concerned, but I started noticing he was maybe a bit behind with his vision a week or two before our two month appointment with the pediatrician.  So I brought it up to her.  She didn’t seem concerned about it at that point; in fact, she said if it still hadn’t improved by our four month appointment, she’d be happy to refer me to an eye doctor.

Anyone who knows me will find that laughable.  Like I would sit on a concern for two months like that!  I gave him two weeks.  I paid close attention to his vision.  I tried to get him to track objects.  We read books, looked at toys, looked at each other…I didn’t feel like he was reacting to any of it.  Sometimes, I would walk in to pick him up from nap, and I would bend over him without saying a word…I don’t feel like he knew I was there until I said something.  It broke my heart, over and over and over again.

I went back to the pediatrician, and she agreed we should get him checked out by an eye doctor.  Which we did.  Monday in Iowa City.  He found nothing structurally wrong that would affect Kiran’s vision.  He does have small pupils (something I noticed during that very studious two week time period), but that generally doesn’t affect vision.  His eyes also didn’t dilate with the drops as much as the doctor expected they would; he didn’t seem overly concerned about this either.  And he has pupillary membranes – these supply blood to the lens in utero and generally break away or dissolve at birth – for whatever reason, his didn’t.  Their placement, however – you guessed it – shouldn’t affect his vision.  Overall, he diagnosed Kiran as being developmentally behind.

That’s it.  He said keep doing what you are doing, give him good nutrition, and give him time.  Unless something drastic changes (and he gave us a couple things to watch out for), he wants to see us back in three months.  He didn’t see anything that made him want to do any brain imaging or anything like that.

I should be relieved.  But my gut tells me he’s not just behind.  I really feel there is something else going on.  Monday was too crazy busy, and I was overwhelmed as it was, so I didn’t push then.  I didn’t even really have a chance to wrap my head around the eye appt before we needed to be at our next appt.  I’m not sure what my plan moving forward is, but I doubt I am going to wait three months, unless I start seeing some improvement.

This whole thing is heartbreaking.  I honestly can’t talk about it without tearing up – maybe this is why I have told so few people about it.  It is gut-wrenching, feeling like your baby doesn’t see you.  It is so hard when he’s not as interactive as you imagined he would be at this age – He’s not very interested in toys (because, truly, I feel he doesn’t see them or at least doesn’t see them well), he’s not giving us real smiles (how would he know to do so?), and he doesn’t gaze lovingly into our faces.

Of course, I want to see improvement yesterday … and perhaps I should be patient and give him time.  The one thing that does make sense to me: This kid sleeps a lot.  Due to how hard he works with his heart condition just being alive, he sleeps more than a normal three month old.  I would know – Most of my nanny jobs started with a three month old.  If he’s sleeping, he’s obviously not using his eyes.  So he isn’t getting much practice.  It does make sense that he would be behind.

I would love for that to be true.  Especially since the doctor didn’t find anything structurally wrong with his eyes – if there is something more going on, it would be something going on in his brain.  And that – well – that is something I don’t even want to fathom right now (though I think about it every day).

I just feel like Kiran can’t catch a break.  I feel like I can’t catch a break.  I am not sure how many more big things we can handle over here.  This one feels as big as the heart – maybe bigger – especially if it might be a neurological issue.

But more than anything – if I take out the what ifs, the unknowns that lie ahead – this is just an emotionally difficult issue.  Whatever is going on with his vision, it is affecting us as a family.  It’s affecting our interactions with him, it is breaking this mama’s heart, and it just feels so huge and scary right now.