I was always a shy girl growing up, but that never stopped me from smiling, raising my arms up to the sky, and saying, "I LOVE my life!" Negativity was not a vocabulary in my body- ever! It was always "I love my family, I love my house, I love everything"
My left leg turned in when I began walking, but eventually grew out of it. However, It was not until I was 12, when I got a palate expander for about a year and things quickly began to shift. I developed a voice condition called Spasmodic Dysphonia. I also started to walk with my left leg turned in again. I quickly began to become an introvert and hide my emotions…resulting in loosing my friends who didn't stick by me. I started to feel out of place in this unknown body. I vividly remember feeling I was going to pass out when the teachers would call on me to read out loud. I felt like everyone was staring at me and judging me from the outside.
My teen years were filled with endless doctor visits, tests, and unanswered questions about my condition. Nothing showed up in MRIs or any tests. Not knowing how to respond when everyone asked me what was wrong was the most frustrating part.
My brother introduced me to the world of photography and that became my outlet to express myself again. I brought my positive thoughts into my photographs. Over the years, I slowly began to get used to the new "normal" and accept my new body.
Fast forward to when I turned 20 years old, the year that I met the love of my life. He accepted me for me and made me an even stronger person. He pushed me everyday to feel more and more confident in my own skin. We got married 4 years later and quickly started a family. We brought our wonderful daughter into our lives August 2014. Daniela made me even stronger! Her smiles and joy for life reminded me of myself as a little girl. She is my constant reminder to remain happy and full of love! Nine months later, we found out that we were expecting another blessing…a little brother for Daniela. I quickly became overwhelmed to the fact that I was going to have two babies. Especially after such a dramatic birth with our first; one that ended up in a c-section, I was not mentally ready to grow another baby just yet. The mother in me; however, could not be more excited to give my husband the son he always wanted.
It was not until, October when I started to notice my neck starting to twist and I immediately grew scared that this was going to be another quirk in my body that was not going to go away. My grandmother, who I was very close to, passed away that same month. My sensitive soul had a hard time swallowing this death. I visited her almost every weekend with my daughter who always made her smile so big. There was now a void in my weekends.
My body continued to grow this beautiful boy as my body continued to twist more and more. And in January, he was born via c-section. Now he is 4 months, and I am falling in love all over again with this tiny miracle that God gave me. The neck twisting flowed up to my jaw, making it even harder to talk and express myself. My mind could not fathom the idea that every few years I was going to get a new symptom. So I decided to get another opinion from another neurologist and he finally diagnosed me with Dystonia, “a neurological movement disorder. Faulty signals from the brain cause muscles to spasm and pull on the body incorrectly. This forces the body into twisting, repetitive movements or abnormal postures. Sometimes the symptoms are accompanied by dystonic tremor” Finding out that there is no cure is scary. However, I am learning to cope with it and looking for ways to make each day more manageable The first few weeks after I received these news were very emotional and I began to dig myself in a dark hole. But every morning, I would look at my beautiful kids and a voice inside me told me to stop the pity for myself. Now I need to be stronger than ever because I am a mom. A mom to two amazing kids and a wife to a husband who love me for me. I started to focus my energy on all the good that Dystonia has brought in my life. Everything happens for a reason. I was given this "gift" for a reason. Yes, there are days that are harder than others. But I have learned that on those days, I just have to be a little more gentle with myself and have patience because everyday is a gift and I refuse to let the little things affect my life and my family.
Dystonia doesn't define me but it helped shape me into the person I am today
I truly got to learn and listen to my body in ways that I wouldn't have if I didn't have Dystonia
The years of the unknown was the scariest part of this journey. Now that I know what I have, I feel more "normal" and at peace with my life
I'm not asking people to pity me...that's the least thing I want. I simply just want to help bring awareness by sharing my story because after so many years with uncertainty, it feels good to finally be able to tell people what I have. Maybe if I had read someone else’s story, I would have discovered my diagnosis sooner.
“I STILL love my life”
Thank you all for being a part of my journey that I call life.
