Blogging

My lack of posts only mean one thing…I am back to work.

My mother reminded me that I have a lot of people following the blog now and while I am honored and thrilled to have such a following, I also feel the pressure of “staying on top of it”. I loved staying home with Rob and Lola while I was on medical leave because it allowed me to not only hang with my family, but it also allowed me to dab into more writing. We started this blog (back then LiveLoveTravelSouls) in Costa Rica as a way to stay connected with our family and friends. I actually never wrote for it because I felt my writing was inferior to my husbands witty charm. But then came a pregnancy and my days of feeling disgustingly ill from the morning sickness prompted Rob to push me to start writing about being pregnant. I remember I sat with my feet dangling in the pool with my notebook and I came up with my first draft. Can you tell I minored in journalism in college? After my first draft, I edited and edited again. I recall feeling nervous to share my writing in fear of being critiqued. Perhaps my hesitancy stemming from journalism professors heavily marking my stories with red ink and phrases like “too much emotion” or “not objective”. But then thinking back to those remarks made me realize I could write with as much emotion as I wanted on a personal blog. If a reader didn’t like it, they simply didn’t have to continue reading. I wrote “Pregnancy” and I knew in the second I published it, I was going to like being a blogger. And so began sharing my our life with the world.

I blogged throughout my pregnancy, I giddily shared Lola’s arrival, I sought advice about being a first time mother only to realize those trivial worries (like whether or not to give Lola a pacifier) were going to be replaced with worries I didn’t think I could handle. The seizures, the diagnosis, the medication, the day the seizures stopped, the therapy and the fear of every unknown I could conjure up in my head were publicly talked about because I didn’t know how to handle it on my own. I would ask my husband question after question and feel no relief until I published a blog post about it. While I certainly appreciated all of the support, I realized my ability to let go was simply getting the worry off of my chest and out of my mind.

My blog was is my diary.

A very, very public diary.

But it’s been cathartic and helpful. I go back and read some of what I wrote and I am shocked as to how raw my emotions were. Not only were they gut-wrenchly real, but I actually hit “publish” meaning I was willing to share it with the world. Now here I am almost two years later still keeping up with this blogging thing. My husband knows the sound of my little fingers diligently typing away and often jokes about what part of our life I am now sharing.

Now the audience has become broader and Lola has become a true inspiration in the special needs community. On a personal level, I’ve been able to create relationships with other families and we share everything from our worries, our triumphs, our doctors or just an open ear. I’ve realized my ability to use this blog as a platform to help organizations I am passionate about. And one of the most important reasons to continue blogging is to help raise awareness about West Syndrome (Infantile Spasms), Cortical Visual Impairment and Lissencephaly (at least we think that’s what Lola has). My article on www.specialneeds.com about West Syndrome has been well received and I’m amazed by how many people have reached out thanking me for informing them about infant seizures.

I never thought my ramblings would turn into a passion, but I’m honored and grateful to be able to share our lives with all of you. The support, advice, resources and stories you have all given us in return is appreciated and will continue to be reciprocated.