Definition of A
I tend to share a lot of personal anecdotes and experiences. It is just who I am. My writings have always been super personal. It is just a hard habit to break. My personal journey with Scarlett is what led me to blogging. It is also what led to me being an advocate.
In the beginning, I was an advocate for Scarlett. Making sure that she got the care she needed. Doing hours of research on Persistent Fetal Vasculature, Microphthalmia, and Congenital Cataracts. Learning medical terminology that sometimes, still, makes my head spin. I did not understand that this is what I was becoming. All I knew at this point was that I was determined to get understand and make sure she got the care she deserved both at home and with her providers.
I always knew that my journey would not stop there. I did not know where it would go or what shape it would take. Until Kyla reached out to see if I wanted to contribute to a blog she was starting… that blog is PFV Kids. I knew that there was a community that needed to be reached. Kyla opened that door for me and I happily joined the ride. Finding other parents to share their stories or adults who are living with PHPV/PFV is a passion. Making sure that no parent feels as alone as I did in those first few months, that is how I advocate with PFV Kids. Making sure that our children will grow up knowing they have friends out there that are like them.
Now, I am working on my next step. Yes. My hands are full. Between work, family, 2 blogs, and making sure I eat and sleep… I need a few extra hours in the day. That will not deter me. It will not stop me from trying to change how our children receive care and the assistance that our PFV families need. I am a little fish in a big pond but I can speak loudly. I am working on drafting a first set of letters to my state representatives and senators. I will write the governor and lieutenant governor. There has to be change in the system and in so many ways. My personal struggles (and my family’s struggle) with insurance coverage has lit a new fire. I will be heard… I will keep knocking until I am heard.
This is what being an advocate means to me. What does it mean to you?