Awareness month

October is Spina Bifida Awareness Month. At first I felt like I needed to be wearing the yellow ribbon and changing my profile pic on FB to 'I love someone with spina bifida', but I didn't like it. I do want people to know about spina bifida and that it does exist and if someone you know (or are about to know) is diagnosed with it, it isn't the end of the world, it's just a shift in your reality, a new normal. I definitely don't wish spina bifida on anyone, but I don't like the idea of him being a cautionary tale. "Take your folic acid or THIS WILL happen to you!!". While it is important to take your vitamins and be healthy, especially if you can't get all your nutrients in, but folic acid isn't a guarantee to avoid spina bifida and it is presented like it is. Spina bifida births did decrease when folic acid was touted as important for pregnancy, but also at that time, ultrasounds came about and the knowledge on how to look for birth defects. So the number of spina bifida births did decrease, but not necessarily all due to folic acid. In a recent year, there were around 3000 cases of spina bifida diagnosed prenatallly and only 1500 births. Many families who receive the diagnosis are advised, or choose, to terminate the pregnancy. So yes, spina bifida births are down, but folic acid isn't the only reason and when it is touted as the cure, or only prevention, of spina bifida, that is false and misleading and has lead to many nights of guilt for lots of people. Yes, take your folic acid, but not to avoid spina bifida, b/c your baby may have it anyways, take the vitamins to be as healthy as you can be for you and your baby, knowing that some of it may be out of your control. The real awareness should be given to the families who receive a diagnosis and the OB doctors who don't know a lot about spina bifida and advise termination based on misinformation. I have found many people whose OB doctors said that their baby will have a significantly poor quality of life because of the spina bifida and hydrocephalus. This isn't true. Hydrocephalus with a known cause like spina bifida isn't as debilitating. The pressure can't build on the brain since the fluid is still flowing out from the opening in the back. Also the soft spot allows for some give with the extra fluid. I completely understand the mindset in that moment of finding out your baby has spina bifida, your whole world crashed, all the images you had for your future with that little baby have been stolen from you, or so you think. At that moment when you hear your baby won't be mobile (which P. S. you can't tell anything with spina bifida for certain before birth) the only thing you can think about is how you had looked forward to walks in the park and playgrounds and sports teams. You hear that they won't be able to control their bowel and bladder and you think about sleepovers and camp outs and teenagers with diapers. You are told that developmental delays are quite possible. While all of this is running through your head like a bad dream, your OB, a trusted doctor, offers the option to terminate the pregnancy. Without being political, I see the point of view and I get it and being in that position has given me a new point of view and understanding on such a complicated issue. But, I digress, awareness month...I would like people to be aware that if they receive the diagnosis, life will change. Things will be hard, but that is true of just having kids in general. We are still so new to Thomas' spina bifida journey, but I see it differently already. He's a part of our life and we do what we need to for him and with him without thinking about it, it's not like we dwell on all his differences, we learn as we go and our life is constantly morphing. It truly is an adventure and I wouldn't trade him or change him for anything in the world, because then he wouldn't be him. That is what I am aware of and not just this month.