With all that has been going on in my life I completely forgot that it was Spina Bifida awareness month. I recently went to Blythdale Children’s Hospital for an appointment (don’t ask why they forced me to go to a children’s hospital). I walked into this waiting area not to flashbacks of my childhood, but to a small waiting room with only about four children in wheelchairs. I don’t know if I was excited or upset. Side note: Every child was Hispanic.
My hospital days were like something out of Grey’s Anatomy. If you’re not familiar with the show, it’s just constant speedy chaos and people everywhere. Mine were children screaming everywhere, me wanting to run away, and just an all around unpleasant experience. I wasn’t prepared for this recent visit at all.
The Neurosurgeon was not even in that day and the clinic is only held once a month, so it was a complete waste of time. It made me remember all of the long dragged out days waiting for doctors, and traveling all over the state to find people who understood what was going on in my life.
I wrote this post to alert people that even though Spina Bifida awareness has come a very long way, there are still organizational roadblocks that prevent those in suffrage the opportunity to be properly evaluated.
My evaluation of that facility, that is now closed, was that every Spina Bifida clinic should have at least two Neurosurgeons present. Come on…the clinic is only once a month. If you can’t get your schedule in order with a month’s notice, you shouldn’t be a doctor because you’re unreliable.
When I was a child, they knew nothing about dealing with Spina Bifida. Now after so many loved ones have shared stories, made their personal experiences public, and those who have participated in clinical research have paved the way for today’s children who are born with the disease, the opportunity for corrective surgery in the womb!
So, despite my arguments and fighting for more equality for those with Spina Bifida, it’s so wonderful to see, and be a part of the advances in the science necessary to save lives of children that aren’t even thought of yet.
Just thought I’d share my end of the week thoughts with you all. ❤