I started blogging in August of 2006, shortly after KayTar's medical and developmental issues became obvious. My life had just been turned upside down, I had no idea what was going on with my child, I had to quit my job to manage her very busy 5 therapies per week/8 specialists to juggle/endless testing/care schedule, and I felt isolated and a little like I had lost myself. I am a very private person, emotionally-speaking, my best friend is kind of enough to look away if God-forbid I ever start to tear up, because I absolutely hate being outwardly vulnerable like that. Because of my private nature, I never felt comfortable expressing my sadness or anxiety about having a medically-needy child to the people in my every day life, but I needed to process it and and release it somehow, and so I turned to blogging. I know, a blog is PUBLIC, how does that jive with my private nature? I never intended to have actual readers, I just wanted to write through my struggles in an effort to turn the amorphous feelings coursing through my veins into something concrete that I could set aside without having to explain myself or my feelings to anyone. I didn't want to write a post and have my mother call me five minutes later to discuss my precious feeeeelings. I didn't want to hear all of those supposedly comforting platitudes that often come across more like a slap in the face than actual comfort. I just wanted to have my own space to process the new (and sometimes scary or stressful) developments in my life. Thus, The Journey was born. I wrote my first post, "The Waiting Continues..." on August 24, 2006. The name of the post makes me chuckle now, I was so naive and hopeful back then. I thought we had been waiting so long for answers...but here we are 4 years later and we don't have many more concrete answers than we did back then, but life is so much easier anyway.
After publishing that first post, I got three comments...from STRANGERS; warm, compassionate, kind strangers. The simple act of writing the post had made me feel so much better, but the responses were icing on the cake. You know how the story goes from there, I visited their blogs, we made a connection...I visited new blogs, those bloggers visited mine...and I found myself in the midst of a beautiful, supportive community. I didn't feel isolated anymore, I was a part of something. I met people that I never would have had the privilege of meeting in my daily life, people scattered across the nation and world. Some of them had similar lives to mine, some were very different. When it came time for KayTar to get her g-button, it was a few of my blogging friends with personal experiences in this area who talked me through it, three long distances phone calls made all the difference in the world in those moments. When KayTar was inpatient last week for the worst test in the history of tests, the controlled fast, many of these same people were virtually cheering us on. Blogging has never simply been words on a page for me; it has provided support, information, and understanding when it was hard to come by in every day interactions.
Blogging has also afforded me interesting opportunities. When my daughter lost health insurance and could not be accepted into a new program because of her pre-existing conditions, I blogged about it. It was picked up by Johnathan Cohn, who was working on a piece for SELF Magazine. They also flew KayTar and I (and my mother) up to NYC for a photo shoot. I never thought I'd pick up the phone and have a magazine editor ask me when they could fly me out to New York! It was pretty amazing, and without blogging, I never would have been a part of something like that. I've done a lot of advocacy work for children's health insurance reform in my state and at the national level, and my blog has aided in that as well.
What started as a secret blog has remained a secret blog. My husband knows that I blog, but he never reads it. I told him that he can read it, but I never want to know if he has and we certainly cannot discuss it face to face. My parents don't know, my best friends don't know, my classmates don't know. That is how I want it for now. Proportionally speaking, my blog is still mostly about KayTar, but I recently changed the name to Life with the 'Tars because I feel like that dark, stressful portion of our journey is over and the blog is lighter now and more accurately represents what our lives are really like. A good portion of it is about me now, not as a scared, uncertain mother, but about my own journey as I my pursue a career in medicine. I also like to dabble in photography and I find it is a wonderful way to share that, as well. Sometimes I think about telling people about my blog, but I'm not ready to sacrifice that privacy yet. I find it hilarious when I am telling people stories about the kids (especially KayTar, who is incredibly hilarious) and someone will say, "Oh Kyla! You HAVE to start a blog!" I just laugh and nod. Maybe one day I'll tell them, but I'm not ready yet. I don't blog as frequently as I once did and I don't always have the time to comment on all the blogs that I read, but I an definitely not ready to step away from it yet. I don't need it like I did when I first started blogging, but I enjoy it and setting aside that time to write, purely for enjoyment, is important to me.
I was thrilled when KC invited me to start writing here, because once again I've found myself a little on the outs with my real-life community. People look at me like I'm speaking a foreign language when I start talking about medical training and everything that goes along with it, just like they did when I would start in with therapy regimens and IEPs and ARDs and MRIs and LPs...but here at MiM, discussing those aspects of my life feels perfectly normal. I think that is the true beauty of blogging, it makes it possible to find or build a community in way that can't always be easily accomplished in your day-to-day life. There are no support groups, or book clubs, or Sunday school classes, or any other sort of easily accessible form of community for mothers of perpetually undiagnosed medically-needed children who are also insane enough to decide to go back to school for a career in medicine...but out here in cyberspace, I've been able to piece that together for myself and it is wonderful.