I have read several of the posts on this message board and a lot of your children's stories sounds just like all the things I have endured throughout my life.I have been living with Spina Bifida for twenty-seven years.  I have bowel and bladder problems, I catherize myself 3-4 four times daily. I developed hydrocephalus at five days old thus had to have a vp shunt and in 27 years I have only had two replacements and one revision. I walk with the aid of leg braces. To date I have had fourteen various sugeries. When I was younger I think I had more of an issue with having been born with Spina Bifida, because of all the social things that it prevented me for being a part of like sleep-overs and other overnights events with friends but this was at a time when I had not learned how to caherize myself and my mother was still having to do it for me.  Now that I am older I don't have as many issues with having Spina Bifida, because I realize that it is a big part of my life and who I am but it does not make me who I am. I think some parents do as mine did and panic when they find out that their child has Spina Bifida. Of course those of us born with Spina Bifida have a lot of health issues but I am living proof that a person can have a good life living with Spina Bifida. I try not to dwell on my health issues and to be grateful that I am living and I think as parents that is how you should teach your children with SB to think and live. SB is not a death sentence. I am grateful to people like the Kodjoes for having websites such as this one to educate people about SB because I have found that it is not something that people take the time to learn about unless they are affected by it.

Thank you so much for sharing.  As a parent of a young child you often wonder how things will be when he gets older.