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Latest Journal Update
It's been a while since I've written here. I have felt so alone and have done at lot of soul searching, etc. I have come to accept that when all is said and done, Little Kenny most likely will have little to no vision. He still can't see anything, other than lights and shadows, out of his left eye, and the optic nerve in his right eye is so badly damaged. At this point, I don't think there's much else we can do to save his vision. We are putting 2 drops in his right eye to try and get the pressure down, but the glaucoma he has is so aggressive that I don't know how much good the drops will do. We decided not to give him the 3rd eye drop because there's a chance it can cause a detached retina, which would make his right eye as bad as his left eye. Also we decided no more eye surgeries, unless it's for something that's a dire emergency. For Little Kenny, surgeries cause more problems. One surgery leads to another and it's obvious surgery has helped him all it could but can't help him any more at this point.
It's been hard to accept all of this and to make these difficult decisions. Some people no longer speak to me now and some parents of supposed "normal" children act like they are so much better than I. I don't have any use for people like this and refuse to have anything to do with them. My son is legally blind. That doesn't make him abnormal. He's a happy, otherwise healthy child, with a very good attitude. He enjoys all the simple things in life and is even starting to accept that he needs the glaucoma drops and is being more cooperative abut taking them now.
During the time I felt so alone, I did an online search looking for support for "legally blind parent of legally blind child". The National Federation of the Blind (NFB) came up on my search engine. I clicked on this organization's site and am so glad I did! I sent them a small donation, all I could afford, and they sent me a more than generous supply of pamphlets, newsletters and books. I've been reading those over the past couple weeks, every chance I get, and find them so interesting. I've learned quite a bit and have hope that maybe my son can have much better opportunities than I've had and can do almost anything he wants to do when he's grown. Blind children are exploring science, space, going surfing, skiing, mountain climbing, etc! These children are growing up to be successful adults. The stories about what other children have accomplished are amazing and such an inspiration. I no longer feel so alone.
I joined the chapter of the NFB that meets at the library in Charlotte Hall, MD. the third Saturday of each month. Kenny took Little Kenny and I to our first meeting today. I met some very nice people, totally normal, happy people that don't let blindness stop them from enjoying life. I so look forward to attending the monthly meetings and hopefully there's something I can do, besides posting here, that will help get the word out about the NFB to people that need it; people like me that have felt so alone for years now. I hope to get the funds so Little Kenny and I can attend the NFB's convention in November. I think this would be a great experience for Little Kenny and I. I'll keep you updated.