So often in this blog, Lola’s condition and progress is the main subject of the content. I happily provide this information as I think it is important not only for our family and friends to stay updated with her life, but I also think it is crucial for other families to see Lola’s life with lissencephaly and West Syndrome in hopes to share some inspiration. But lately, Lola’s life with these conditions has not been an ever present part of our daily lives which is why I have steered away from blogging about every minuscule detail. No longer do I wake up each morning and think about lissencephaly or seizures. Sure it crosses my mind, but Lola is blossoming right before our eyes and you just kind of forget that she has any sort of handicap at all. I’m still sensitive to the possibility of recurring seizures, but other than that, I think I have finally adjusted to the reality of all of the unknowns. I often receive questions about her vision, her future in the schools, her mental capacity and right now those things are in such a far distance that I try not to even go there. I’m living for today. I’m living for this very moment with her as there is simply no way to predict what the future will hold.
I want to take a minute to send my condolences out to Courtney Roth from over at “EB”ing a Mom. Courtney’s son, Tripp just lost his battle with Junctional Epidermolysis Bullosa which is a rare genetic and often terminal skin disease. I cried as I read the news that Tripp had died. Hell, I cried while reading every post as no child should ever have to suffer in such a horrific way. My heart goes out to Courtney as no mother should have to watch her child die. It makes me incredibly grateful that Lola does not have a terminal disease. It makes me feel ashamed for ever asking “why Lola, why us?” because while Lola’s life may not be whatever the definition of normal is, it is perfect. She is perfect. She is exactly who she was meant to be and I’m relieved that her condition is only a neurological disorder and nothing terminal. But in reading about Tripp, it has made me deter away from blogging and really my computer in general. When I get home from work, all I want to do is spend time with my family. I want Lola to know that I’m home. I want to hug her extra tight and watch her try to feed herself and listen to her laugh. I want to enjoy my limited time with her as working a full-time job takes up most of my day.
So I apologize for my lack of posts, but my little girl means the world to me and I need to enjoy all of the time I have with her. As I am becoming more familiar with work/family life balance, we will be launching an updated version of our site. Rob will be introducing himself on the blog (I’m posting it babe so that holds you accountable!!), we will be unveiling Rob’s new “Say Hola Lola” logo and obviously we need to change some of the content as we are now living in cold ass Indiana, not in sunny Costa Rica! If there is anything you’d like to see more on the site, please feel free to email me at: firstname.lastname@example.org