October 27, 2016 - a day that I will never forget. I was at my friend Madi's (also my first subscriber to the blog!!) surprise birthday party. We had spent weeks planning the surprise and I knew that I could NOT miss it no matter what. As I sat in my Biology class, I ached, had chills, and began to develop a headache. Tick tock. Tick tock. Could the clock go any slower? The thought of missing Madi's birthday party crossed my mind, but I quickly dismissed it.
As I got into my mom's car, I felt ten times worse. She took one look at me and asked if I was okay. She suggested that I not go to the party, but I resisted this suggestion. The party was SUCH a wonderful time, but as the night progressed I felt worse.
The next morning I called my mom to pick me up early. I was awake throughout the night with severe back, stomach, and head pain along with chills. I knew something was really wrong.
After a full day of trying to lower my 102-degree fever, my mom decided to take me to the emergency room. By the time I was seen by the doctors, my fever reached a whopping 103.4 degrees and my pain reached a ten out of ten.
I ended up being in the hospital for five days. I had a severe gut infection (C. Difficile) that is typically found in elderly people. Man, I aged faster than I thought I would! The nurses and doctors sent me home with antibiotics and I was hopeful that I would be back at school the next week.
I returned to school the following Monday and did not realize what a big deal this illness was until one of my AVID (Advancement Via Individual Determination) tutors pointed out my weight loss. I soon realized that I lost eight pounds within five days and I was already thin (not trying to brag).
A couple of weeks following this hospitalization I started to feel ill again. I experienced joint pain, stomach troubles, and extreme fatigue. Long story short, little did I know that this was the beginning of a lifelong struggle for my health. Why am I writing about this on a special needs blog? This journey is where my passion for the special needs community manifested.
After several hospitalizations and procedures, I was diagnosed with Crohn's Disease on January 19, 2017. I will never forget this day, but I am thankful that it happened. As I woke up from the anesthesia, my eyes met my mom with tears in her eyes.
"It's Crohn's, baby. I am so sorry. We will get through this," she tried to convince me as she also tried to convince herself. I had previously wanted a diagnosis, so that I could get treatment and get my life back but when the diagnosis faced me head-on I despised it.
"Will I have this for the rest of my life?" I asked Dr. Russo.
"Yes, it is a chronic condition, but we will treat it. I will make sure you get better!" he answered with compassion consuming his face.
The next six months were lifechanging. I experienced additional hospitalizations, drug reactions, new therapies, and having to withdraw from school. I ended up being out of school for four months of my Freshman year of high school, but thank the Lord for 504 accommodations. If you are unaware of what this is, it is a section of a law that requires the government to offer accommodations for those with a disability. This was my first glimpse at what having a disability was like, and, to be honest, I did not like it so much.
I eventually got better with an increased dosage and frequency of an infusion therapy that my gastroenterologist put me on. I expected my sophomore year to be easier, but that was the polar opposite of what occurred. I began having severe neurological deficits and struggled with ALL activities of daily living. After about six months, I was diagnosed with a neurological condition that is also chronic, like Crohn's Disease.
I struggled to brush my teeth, dress myself, eat, shower, and complete my school work. I remember doing a class project for my Honor's World History class and being judged for how I communicated. Forming words was extremely difficult, as well as expressing my feelings. A classmate of mine yelled "Oh, look. She is scared of us. Poor girl," as she laughed at me. I cannot express the amount of pain that these words caused. I knew something needed to change and this was when God planted a seed of passion for those with special needs. This passion did not sprout until my Junior year of high school, though.
One of the best decisions that I have made in my life is joining Best Buddies. This is an organization that strives to bridge the social gap between those with disabilities and those without. If you are interested in learning more about it, here is a link to their website: https://www.bestbuddies.org/.
I met some AMAZING people and those with special needs at my school quickly became my best friends. We sat together at lunch every day and talked, listened to music, danced, and simply created an inclusive environment where every one, no matter their abilities, were heard, cherished, and adored. THIS is why I started this blog. The people I met through Best Buddies and other experiences with those with special needs are the most grateful, joyful, and down to earth people that I have EVER met and I hope this blogs reveals their worth to you.
Thanks for reading! If you have any comments or questions, feel free to message me on the blog!