I think there are two answers to that question. The first answer is that most people with spina bifida also have hydrocephalus. Every one of us has cerebrospinal fluid around our brains and spinal cords. The body makes this fluid – nicknamed CSF fluid – all the time and somewhere in our brain’s fourth ventricle is the mechanism that regulates the volume of the stuff and gets rid of the excess. That mechanism in SB patients is broken. Up until about fifty or so years ago, people with SB and hydrocephalus usually did not survive because all this fluid built up and, well, heads would swell so big that the brain got squished and stopped all function – you died. There was this guy who invented “shunts” (more about this guy on another blog) that helped shunt the excess fluid and … people with SB had a real live chance at living and thriving! People with SB are finally living and growing up and making it to adulthood. Medical innovations have given life to people with SB. So, maybe you never heard of SB because most who had it didn’t survive. The second reason is, unfortunately, fifty years ago the disabled were tucked away and shunned from society – if they didn’t die first.
Today’s sermon at church made me think about all my fellow SB parents … ‘cuz ya see … when SB joins your family, it’s like you get religious about it … it becomes a way of life … you become a follower.
Today is Pentecost Sunday where we celebrate the receiving of the Holy Spirit by the early church. Afterwards, energized believers went out to learn all they could about their God, to hang with fellow believers, to eat together, and pray continually for each other.
Today’s SB parents mirror that devotion and faithful following to the cause of their children! It’s awesome! SB parents are INFORMED and will read up on all the new medical technologies that will benefit their child. SB parents have conferences they can go to and often get play dates scheduled to meet and hang out with other SB families. Whereas the early apostles broke bread and drank wine together, well SB family get-togethers include all kinds of food! And any time one of our SB kids have a scary test or surgery, you can see prayers of support flying in all over the internet sites!
It is encouraging to see the growth of SB groups on Facebook and other social media sites. By joining forces we can share valuable medical information, find friend with lots in common, enjoy food and fellowship, and support each other when we’re down.
To all you SB moms and dads out there – you are my heroes.
Acts 2:42 They devoted themselves to the apostles’ teaching and to fellowship, to the breaking of bread and to prayer.