Spina Bifida. Now isn't that a funny sounding name? Well, it may be funny, but it is anything BUT funny. For one thing, I happen to HAVE it. I was BORN with this thing called "spina bifida"!
For starters, spina bifida is one of the most common birth defects that strike children, and it is congenital, meaning that it is with them from the time of their birth. Now, there are varying degrees of SB, but mine is one of the more severe cases. I am totally paralyzed from my waist on down, and I cannot walk without long leg braces or Lofstrand (forearm) crutches. I also use a wheelchair.
Unfortunately, spina bifida is lifelong. That means I will ALWAYS have it, and I will ALWAYS be paralyzed. I will never get better, even with surgery. Oh, they can help with any problems I may have down the road, but they cannot CURE my spina bifida. I'll always have it forever and ever!
When I was being born, my spine didn't form right, and it somehow devided prematurely. As a result, I was born severely physically handicapped. When I was born, I had this huge egg-like looking sac on the lower part of my back, and my legs were paralyzed. (I still AM paralyzed to this day, and I have had many surgeries.) I walk, but I walk with long leg braces, and I walk with Lofstrand, or forearm, crutches. I also use a wheelchair if I have to go for longer trips, like to school, doctor's appointments, and stuff.
I have had many problems because of my spina bifida. I am hydrocephalic, meaning I have "water on the brain" (not really, but this is what hydrocephalus is referred to as; basically, it's when there is excessive cerebralspinal fluid in or around the brain; it can be dangerous if it's not treated; and as a result, I had a "shunt", or a drainage tube, inserted into one of the ventricles of my brain), and sometimes the tube has gotten blocked; and I have gotten severe headaches and had a seizure (I have to go DIRECTLY to the hospital when this happens, and twice I have had a shunt removed and then replaced), I have had many bladder or kidney infections, and I have some learning problems. And because of the spina bifida I had at the time of my birth, I cannot feel ANYTHING from my waist on down; I am TOTALLY numb from my waist on down!! But other than that, I am your basic, normal, 10-year-old boy.
I love to sing, and I love to play video games with my friends after school. I also love to read, watch anime cartoons on the boob tube, collect baseball cards (my favorite team? the New York Yankees!), and watch football on the weekends if I don't have any homework. I also love to play basketball! (Hey..just because I am in a wheelchair some of the time DOESN'T mean I can't play basketball! I make a rather formidable POINT GUARD!!) But what I REALLY like to do best of all is draw and paint. I'd like to be either a professional artist or a professional wheelchair athlete when I grow up!
I am the only one in my family with spina bifida. My sisters, Ashleigh, Tiffany, and Tyna, don't have it, and neither do my brothers, Ruben or Trystin. Only I, Oscar Ricardo Guitierrez, has it! But my family has been really good at supporting me when I have had to go to the hospital or have more surgery, and so have my mami and papi! And they do all they possibly can to try to make me laugh, even when I feel like crud when I come out from under the anesthesia! And I guess that kinda' makes me special! But it's a "special" I wouldn't wish on my WORST enemies! Having spina bifida at times is nothing but a GIGANTIC PAIN!!!! >:(
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