Saturday, May 10, 2008


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.


amber and james said...


You "hit the nail on the head" for how we feel too! I believe that any parent raising a special needs child can totally relate to what you wrote! I have so many of those exact same feelings, so you are not alone. My husband also commented that he shares similar feelings and anxieties.

I am so glad you posted here! I really want everyone to have a chance to post here! I am relieved to hear the things you and Cece have written, it is nice to know we aren't alone in our feelings. Nice to meet you!

Lessie said...

I'm just so glad you've started this blog. Sometimes it's such a bummer to not have more parents to talk to. I can't wait to see some of the other stuff that everyone posts. It's good to know you're not alone, ya know?

Julie said...

FWIW, I work for a nonprofit that offers services to those in the community for people with disabilities and both the blind people we give services for live alone, cook, clean their own houses, grocery shop (with a little help on that one, we drive and describe, but they make lists etc.)and hold steady jobs in the community, so it is possibly for blind people to lead typical lives, so there is tons of hope for the future!