I knew I would end up wanting to write to Will Smith at some point! Honestly, I think he is a great actor, but more importantly, he just seems like an awesome human being. Known by many Generation Y-ers (like me!) as “The Fresh Prince,” he is both an actor and a rapper. His film credits include such comedies as “Men In Black,” and “Hitch,” as well as the dramas “Seven Pounds,” and “The Pursuit of Happyness.”
As a philanthropist, Smith donated a large sum of money to help the victims of Hurricane Katrina, and also donated funds to the Church of Scientology’s literacy campaign. Seriously, I can’t seem to stop dancing to the song that’s playing in my head right now– Will Smith’s “Miami.” “We’re going to Miami (bienvenidos a Miami!).”
Right now, I would like to address something that’s been on my mind for the greater part of the day. I received a comment in which a new friend of mine on Twitter, Andrea, poured her heart out to me in her story of her baby girl of 18 months who has hydrocephalus, cerebral palsy and epilepsy. Andrea, I am so appreciative of you reaching out to me to share your story. And you’re right– both you and my mom have been through similar emotions of fear, anxiety and heartbreak when entering the uncharted territory of being a mom for a special needs child. I want to mention that I shared your story with Mom and my Grandma, and all three of us were moved to tears! Keep the faith alive– your little girl will make much progress and God has a very unique purpose for her!
I will be going into more detail about my early life and the surgeries I had in those first few weeks in my next posting of “My Personal History” (believe me, I will put it together soon!), but for now, I will answer a few excellent questions that Andrea posed.
As I mentioned in the first part of my “biography,” my parents never knew during their pregnancy that I would have spina bifida. That part was a surprise to them. They knew that I would have hydrocephalus, and so it had been planned that I would have a shunt surgically inserted right away, but when I was born and the myelomeningocele (scientific jargon for “spina bifida!”) was discovered, that took precedence over the hydrocephalus, and so they had to wait a week to implant my shunt. They had to close the spinal lesion the day I was born. My very first shunt was ventriculo-atrial, which means that the cerebrospinal fluid drained into the right atrium of the heart.
Currently, I have a ventriculo-peritoneal (VP) shunt, which drains into the abdominal cavity. I’ve had a number of revisions, due to malfunctions, infections, and to account for my growth, especially in my early childhood years.
In my early school years, since I did not do as much walking during the day, I would use just leg braces (sometimes a walker) for elementary school. In middle school, however, my neurosurgeon warned that the strain on my back and legs of carrying many books and walking long distances warranted my daily use of my chair. (I already used it for malls, theme parks, and longer distances). I do not normally use it around the house, unless I have a foot surgery or something like that.
It did take me a while to learn to walk. I did not walk until about age two and a half, as I had foot and leg surgeries to correct clubfeet and straighten out my legs (which were facing inward somewhat).
In short, in early life, I had many surgeries, orthopedic, urological (bladder reconstruction), and shunt-related. Even though it may sound overwhelming, I try to take one thing at a time, and eventually, you see the accomplishments.
I will add that today was not a very good day for my bowel system. I know this is a hard subject to read about, but to me, it is merely a daily struggle– often a really painful one. I know I have probably tried everything under the sun to get “regular,” but it’s always on-and-off, as I’m not very good at keeping up with regimens. Also, I love to eat out a lot. That screws up my digestive system probably more than any other thing.
As always, it is a lot to take in! But, if you do want to read more, I promise to update as soon as possible (meaning as soon as I can corner my parents again and pick their brains for details!) about my early childhood. I want to mention that they are both very much involved with this project (my blog). They seize any opportunity to tell their friends and co-workers, and I can always approach them when I run dry of ideas.
But yes, instead of rambling, I think I will just take advantage of the moment and post early. Buenas Noches!
May God Bless Andrea and Baby Rowan! ♥