October is Spina Bifida Awareness month, but most people don't know that. My cousin has had Spina Bifida for the past 27 years now. No matter what, she is an inspiration to me. She could be having the worst day, but you will never see her without a smile on her face. She always looks at the bright side of things. She is truly a beautiful person inside and outside. Here is her story!
My name is Kaitlyn and Spina Bifida has been a big part of my life for 27 years and will affect me the rest of my life. I live every day with pain, anxiety, the feeling of being different, but most of all the strength to get through anything. I was born with the least severe form called Spina Bifida Occulta. I was diagnosed at two and had my first of over 20 surgeries when I was just seven-years-old. Most of my surgeries were to untether my spinal cord and repair the unraveling. I also had other surgeries to take out infections, reconstruct my foot (which had turned in due to my Spina Bifida), and some others.
I almost died twice. Once from a severe infection and once from a anesthetic allergy. I spent a lot of time in hospitals, doctor’s offices or physical therapy. It was hard having to be home schooled for extended periods of time, when being in school the kids not understanding why you are different, being bullied, and on top of that all the side effects from when my spinal cord would tether which included many things like loss of bladder control, pain, weird things happening with my feet and legs, numbness and much more.
Though I did not always know my strength, I have learned to live with chronic back pain, some days worse than others. I am very grateful for the things I can do, like walk because many people with Spina Bifida are wheel chair bound. I am also grateful for the things I have overcome, like being able to graduate college and live a mostly independent normal life. I do have insecurities, though, like on bad days my limp is bad. Where people will ask are you ok? and I have to explain its just a bad day.
I have scars, a huge one on my back which I do have a hard time showing people. They say a scar is the sign of things healed which is true, but those who don’t understand what the scar is and from that will judge you. Dating is not easy because not everyone understands and accepts your differences. Even though i am strong I have to sit out sometimes. Some easy daily things for normal people are hard for me. Walking for extended periods of times is sometimes a struggle. Though I have not had a surgery in a few years which I am grateful for, my Spina Bifida still affects me.
When I do decide to have children it would be at a high risk I’m told and I have more of a chance of passing Spina Bifida on to them. Even though Spina Bifida is a lack folic acid during pregnancy, research says it is still genetic. Even though I am done growing, my spinal cord can still tether which would require more surgery. I can lose body functions at any time. I cannot dwell on those negative things through, I just need to live life to the fullest.
I am now 27 years old, I can look at my life with such a positive attitude. I can truly say that I am blessed. What has gotten me where I am today is my amazing support system, I am blessed to have amazing parents who have done more for me than I can ever express. My Spina Bifida did not only affect me but them as well. My parents spent many sleepless nights in hospital rooms, sat in waiting rooms during eight hour surgeries, it was not easy having a sick child for them, but they always had positive outlook and did whatever they could to make my life better. My sisters had a not so normal childhood as well, and it was not easy for them. I can’t thank them enough for their sacrifices for me, for loving me unconditionally and teaching me to never lose hope. An amazing medical staff, especially a nurse practitioner Nancy who became more like family, she kept us all sane through some very difficult times.
My extended family also helped out so much, by always being there for my family, visiting me in the hospital, and supporting us in hard times. I also have a small but amazing group of friends who have never treated me as anything but equal. Surrounding yourself with people who push you to be the best you can, but also respect your limitations is so important.
In conclusion, there may be days I don’t want to get out of bed because I’m in pain, but I always get up and try to have a positive attitude. I still struggle with physical limitations, physical deformities, and emotional issue daily, but try to be positive. The most important thing I have learned is to never lose hope, never give up, and when things are bad it could be worse. I have learned that Spina Bifida and all its effects, do not make me weak, they make me strong. Lastly, I believe that the things I went through, though hard are what made me who I am today which I like to think is a kind hearted and strong woman and for that I grateful.
