Optic Nerve Hypoplasia Support Group

Hi.. I am new here. I am not new to this condition, however. My 10 year old son was diagnosed with S.O.D. at 4 months old and has had several more things added to that list over the years. I don't think I will ever stop learning about the symptoms that come along with this beautiful child, but I have come such a long way since then, and I hope to share my resolve with any of you who are struggling. I remember being afraid and intimidated and not quite sure if I could handle all the big words! It got to a point where I decided that the only way to feel empowered was to become an expert, and I can now say that NOBODY knows my son like I do! It was not easy. I have cried, and sometimes still do, but I can honestly say that I feel like it's going to be okay. When he was little I didn't know what he could see or how he felt or what trials his diagnosis would bring, and that was scary and sad. As I learned more about what he needed I was able to teach him, and THAT felt right... finally. We are still going through it, but I think the biggest lesson I've learned in the last 10 years with him is that if I feel uncertain or scared or even sad the cure for me is knowledge. It is what keeps me going and I think it will help him on hard days.
Posted on 10/24/09, 03:10 am