Oscar has something very wrong with one of his eyes.  Actually, he might have something wrong with his brain, but whatever it is is affecting his vision.  I first noticed that there was a problem the day after I picked him up in VN.  His eye sort of shakes – the iris/pupil flits back and forth constantly, he turns his head to use only his left eye and he only uses his left hand.  The doctor at the SOS clinic in Hanoi was the first to identify it as a serious problem, telling me that I should talk with my agency to determine whether I should even take him home, as I had not anticipated adopting a child with a special need.

Of course, I didn’t do that.  Even taking into consideration how difficult my relationship with Oscar was early on there was no way that I would have considered leaving him behind in Vietnam.  I automatically dismissed his suggestion, but the issue behind the suggestion (that there might be something significantly wrong with his vision) remained.  Since our first visit to his pediatrician here in the States, we’ve seen a number of specialists, most of whom told me that the condition was something called ”nystagmus,” a condition that has no cure, has only one treatment that isn’t very successful and that may lead to complete vision loss.  Others simply noted it was a complete vision loss (that’s what the PC medical world appears to call the condition formerly known as blindness).  Great.  We saw a neuro-ophthalmologist yesterday who wasn’t so convinced that this is nystagmus, but he was also not convinced that he knew what the condition actually is.  He just knows it’s something he wishes weren’t there.

At this point, my frustration with the medical community is pretty pronounced.  I understand that it is misdirected.  It’s not their fault that there is something wrong with my son’s vision.  It’s probably not even their fault that they can’t identify the problem.  He is, after all, a one-year old who has extremely limited communication skills (unless you take into consideration his highly developed ability to grunt).  I just wish I could ascertain what that problem actually is.  At the most fundamental level, I wish I understood whether my son even has any vision in his “bad” eye.  No one has been able to even tell me that.  We’re at the point now that I’m patching his “good” eye at home in order to tell whether he can see with the other eye.  So far, I can tell that he can track light with the eye, but who knows if he can actually see anything (it doesn’t appear that he can).  I’m hoping that I’ll be able to get him to wear the patch long enough this evening to determine whether he’ll watch his favorite movie and if he can track any of the action.

The reason I mention this is that I’m finding it ironic that most of the people I’ve told about child #2 being HIV+ (I’m only telling people IRL if they’re immediate family members or people I’ll need to have write reference letters addressing my ability to parent a child with the virus) express so much concern about the stress that accompanies having a special needs child.  They’re right.  It is stressful.  But it’s a stress I’ve been living with for a while already.

People like to tell me that it takes a special type of person to parent a special needs child.  That is wholly untrue, IMO.  It just takes a parent.  I didn’t request a special needs child when I started the process to adopt Oscar, but I ended up with a child with a vision loss.  I think it goes without saying that I would prefer that this weren’t the case.  The disappointment I feel for him for what he might miss out on (e.g., driving a car, perhaps playing sports) is sometimes overwhelming, but I’m not sure that it changes our relationship.  I mean, sure, it changes it on days like yesterday when he had his eyes dilated and spent the day in dark rooms refusing to eat and I tried to compensate for it by babying him more than usual.  Yes, we spend more time in doctors’ offices and I spend more time on the phone with my insurance company, but our relationship isn’t different.  I’m the same mom I would have been had he not had this problem, and he’s the same kid.  He just can’t see out of one eye and I’m now able to see that there’s not necessarily a difference between parenting “special needs” and “healthy” children.

What I think about most is that if the orphanage had disclosed the existence of his vision problem, he would have been designated a “special needs” child, and I would not have adopted him.  I wouldn’t have even considered it.  That is unfathomable to me now.  The fact is that Oscar would probably still be in his orphanage waiting for someone to choose him despite his “eye thing” (as we call it).  The fact is that there are many other Oscars still in their orphanages in the same predicament, but I’ll leave that topic alone. 

I promise I’m not going to start with the preachy posts; this one really was in remembrance of a certain girl last winter who rolled her eyes at the parents with SN kids who would reply to the posts on the Yahoo! groups about wanting a “healthy” kid – you know, the posts where the parents say “even if you ask for a healthy child you never know what you’re going to get.”  I may have thought that they were stating a truism – of course you never know – but I missed their subtext, which is that if you only ask for a healthy child you never know what you’re going to miss out on.  You could be missing out on the best thing to ever happen to you.