Hello, My Name Is...

Welcome to my blog! An open, safe space for people to connect, express, and be seen. All things start with a simple introduction, here's mine:

As I have dived into the recent season of sharing my story through a variety of outlets, the area of writing has stuck to me in a personal and powerful way. Because of this, I am incredibly excited to share my decision to take my experiences one step further and start a blog! If you are reading this, there is a high chance you are already aware of my story or have an idea about it. To keep it short and simple, I was diagnosed with an extremely rare genetic disorder called Oculofaciocardiodental, or OFCD. This condition stems from a mutation in the BCOR gene and occurs in less than 1 million females alone. While I would typically include my common catch phrase now about how my condition makes me literally 1 in a million, one thing I have realized through sharing my story is how every single individual, rare genetic disorder or not, is 1 in a million.

"....one thing I have realized through sharing my story is how every single individual, rare genetic disorder or not, is 1 in a million."

While I have always had the desire to start a blog, I discovered that now was the right time for a multitude of reasons. From the growing passion, I have for writing, to the impact, I have experienced from connecting with others, the personal growth I have recently gone through has equipped and led me to this decision. The variety of opportunities I have received has ultimately enabled me to step into my story and my truth in its entirety. Because of this, I have been able to share the parts of my medical journey that I previously chose to hide.

Through every message I have received regarding the relatability or understanding my story has brought, I have been able to take away similar feelings of connection, unity, and community.

By picking up on a recent interest in writing, I have taken away a number of things. For one, I have felt a newfound sense of peace through the freedom that this specific outlet consists of. To be able to transmit my thoughts onto paper and communicate my experiences without limitations, restrictions, or barriers is a wildly liberating feeling. While I am definitely the type of person to openly express what I am going through and talk myself through things, the power of writing has expanded my comfort by pushing me to express what I haven’t before. Another concept I have been able to take away is the influential power that writing holds. Ultimately, the concept of writing can be considered storytelling; to write is to tell a story. Writing not only has the ability to push oneself to go beyond their reach, but it offers the opportunity for growth. Writing serves as an outlet for one to step outside what is considered to be comfortable and to find peace within the pages their story is being revealed onto. The fascinating thing about stories is that no two stories are alike; every story has uniqueness and can be told to its fullness by the one telling it.

Blogs' Vision

My overall hope for this blog is to bring peace where peace has not been present, bring unity to those feeling alone, and to offer a space for people to feel heard and understood. I commit to bringing vulnerability, an open mind, and a space for discussion and connection! One thing I want to carry throughout this blog is impact. A theme I am committing myself to tie into this platform is a section on reflection. Reflection is an important aspect of our everyday lives in that it gives us the opportunity to take a step back, observe, and move forward in a place and mindset of growth. Whether it’ll look like a set of reflecting questions, a weekly affirmation/mantra, or an inspirational quote, this section will be included in every blog I post! To jump right into this practice below is the first “Reflection” section!

REFLECT

It’s the start of a new year! Imagine this as the first blank page of a 365-page book. What do you want this book to look like? Pick up the pen and write the book you’ve been wanting to!

* Throughout this next week, I encourage you to think about 3 "chapters" you want this year's book to have! Write them down, read them out loud, and use them as motivation throughout the year!

Two things I want to leave off with are that 1. no one can communicate their story better than themselves and 2. our voices are the most powerful tools we have been given.

Use your voice, share your truth, and embrace your story!