Let me start off by saying “CONGRATS!” No, not because of the disability, but because you are going to have a child! What a wonderful thing Sure Spina Bifida, and Hydrocephalus (and other diagnoses for that matter) can be scary words. I would imagine that you may be in the middle of a long search for information as you’re reading this. It’s understandable that you may be having a lot of mixed emotions right now. Go ahead and search. Learn all you can. But never lose sight of the fact that your child with a disability is, first and foremost, a CHILD like any other.
So you want to learn what Spina Bifida is? Spina Bifida is many things to many people. It affects us all differently. There are some commonalities, but we are all different. In my years of living with Spina Bifida I would say that one of the biggest commonalities is that “Most of us are NOT as bad off as some doctors will predict.” Sure we have our challenges, but Spina Bifida and Hydrocephalus are NOT the “doom and gloom” that we are sometimes led to believe. I don’t know why doctors give expectant parents these horrible predictions. Perhaps it is to “prepare them for the worst” in hopes that it may never happen. Perhaps it is to cover their butts. They don’t want to “under predict” and have parents shocked by reality. Perhaps it is due to the fact that even in this day and age, many doctors still have an understanding/knowledge of Spina Bifida that is 30-40 (or more) years out of date. It’s sad but true.
Did your doctor tell you that your child’s disability would leave him or her blind, deaf, and severely mentally retarded? My parents were told this in 1970. My Partner’s parents were told this in 1976. Still more parents are being told this today. Often, it ISN’T true.
Since everyone with Spina Bifida and Hydrocephalus is different, it can be difficult to tell you exactly what these disabilities ARE. Let me tell you what they AREN’T. They aren’t the automatic “death sentence” that some people would have you believe. They aren’t something that will automatically make life an absolute living hell. Yes, these disabilities provide a unique set of challenges. Doesn’t everything? I encourage you to look around the internet and read the personal accounts of people who are living with Spina Bifida. I have included some of this in my own webpage. Decide for yourself what these disabilities are.
If I can say one thing about these disabilities, it would be that it DOESN’T take away a person’s ability to love. It doesn’t take away a person’s sense of awe in relation to this world. If anything, it has taught me, to appreciate what I HAVE.
If you have more questions, please don’t hesitate to ask.