Anxiety

I have two boys. My oldest son, Theron, is four years. My youngest son, Gareth, is sixteen months. He has a condition called Optic Nerve Hypoplasia and a condition called Septo Optic Dysplasia. Can I just say that it was such an odd experience, when even at a month and half old, I could tell that something was wrong with his eyes? I knew it was true, but didn't want it to be true. I kept telling myself that blindness wasn't so bad, that there are worse disabilities to have, that if he was really blind, he'd still be able to live a functional life. But when we finally saw an ophthalmologist when he was six months, we were heart broken to have it confirmed.

I don't know how to express how overwhelming it is to be the parent of a blind child, how painful it is to hear people tell you how special you must be to have received such a child when you know so deeply your own inadequacies--to feel the pressure that such statements put on you to do a stellar job of raising your child. People keep telling me that I'm the perfect mother to have such a child, but only I know how dark my parenting days get sometimes. Only I know how much I struggle doing all the different activities I'm supposed to do with Gareth. They couldn't be more wrong when they say things like that. I was just a normal Jane, doin' my thing when I had Gareth. As Amber intimated, I was having a hard enough time with my sighted child--much less raising a visually impaired child as well.

To add to my anxiety, I know how important it is to do things right--to balance his needs with the needs of my older son who is normal and to make sure I explain enough to this little guy so that he makes those connections that are second nature to my sighted child. And yet I feel like most days are abject failures--days when I get so scared and overwhelmed that I go into creative avoidance mode so that I don't have to deal with all this. I love my boys more than I ever thought possible, and for the most part, we have a good time. It's those other days generate posts like this and make forums like this so important. I'm excited to get to know every one--people that can really know how scary our children's disabilities can be and yet how exciting their successes are also.