My Life Experience
I've had many obstacles throughout my life which have shaped the person I am today. I’m writing my story because I want others to know that no matter how many hardships you face in life or no matter what you may be diagnosed with, you CAN do anything you put your mind to!
I'm the last of three girls in my family. As an eleven-month old child, doctors realized I had heart defects and I had to undergo open heart surgery. Although the surgery was a success, this event had lasting effects on my overall development. I was always the smallest kid. When I spoke, I sounded very nasally and was constantly repeating myself so others could understand me. I wore glasses. I was often sick with one thing or another. Very early on, you could begin to see the odds stacked against me.
I always had difficulties in school. I had been diagnosed with characteristics of dyslexia which greatly affected my reading and writing capabilities. I was in speech therapy because I wasn't quite as far along as most of the kids my age and of course because of the nasally sound. I always needed extra help and extra time no matter the subject. Nothing about school came easy to me. My wonderful parents tried switching schools a few times to find places that would accommodate all my needs. No matter where I went, school was difficult for me.
Throughout my teenage years, I would regularly deal with back pain. Eventually I saw doctors about it and at seventeen, I had scoliosis spinal fusion surgery. Because I was so different, I ended up being bullied a lot throughout the years. At one point in time I can remember going home and crying at least once a week. Looking back, I'm so thankful I had involved parents, a wonderful family and a few good friends that kept me going and supported me! I ended up in a home school e-learning program in high school and earned a certificate of completion from there. Later, I graduated from a local college with a Medical Office Assistant degree. I currently work as an Assistant Activities Director for a nursing home, and I love caring for and helping the residents there. They love me too!
About a year ago I was working near the Occupational Speech Therapists at the nursing home, and one of the ladies commented about my nasally voice. They told me next time I saw an ENT doctor that I should ask about velopharyngeal insufficiency. Of course, I research this and seem to fit the description pretty well. I saw a specialist at Ochsner and at twenty-four years old, I was diagnosed with velopharyngeal insufficiency. I had a gap between my soft palate and nasal cavity that caused me to loose air when I spoke. It essentially made me sound nasally all the time. At least I FINALLY knew why! I had pharyngeal flap surgery shortly after to attempt to correct my speech and it is still improving every day. I'm thankful to the two speech therapists at work that tipped me off.
The specialist I met with at Ochsner had also mentioned that I seemed to have many of the symptoms of something called velocardiofacialsyndrome or 22q deletion syndrome. This was based on my entire medical history to this point and some of the physical features he recognized in my face. A few days ago I had bloodwork done and we'll see if I test positive for 22q. If I do, it'll be more pieces of my puzzle being put together - more questions answered.
I've always questioned, "Why me?". Of course I just want to be normal. I want to be like everyone else - who wouldn't!? But I'm not normal - I'm special. I embrace being special because in spite of all the hardships and struggles I've faced and I'm sure I WILL face in the future, I'm a more compassionate and caring human being. I'll always be the last one to judge someone based on how they look or sound. I'll always be that person willing to help others. And even though I may still struggle with my own insecurities and anxieties, I know I'm a work in progress and I won't ever quit trying to be a better me!
So, back to my original purpose for this story - I just want you to know that YOU CAN DO ANYTHING YOU PUT YOUR MIND TO! I truly believe this, because I live it. Most things in life are just harder for me. I accept that, and I work harder for the things that are important to me. Be SPECIAL! Be YOU! Do not let anything stop you from living the life YOU deserve!
