Why I keep this blog.

When I think back to why I started this blog, I recall a few reasons. I thought it would be a great way to keep friends and family up to date with what was going on in our life. It also served as a great way to chronicle all the things Elle was doing and lastly, I hoped that one day, Elle could go back and read it for herself. I still do it for the same reasons plus one. I have recently joined an online group called "The Loop"...The Lissencephaly Loop, to be exact. I hate that word...Lissencephaly !! Anyway, the group is made up of parents & grandparents of children with Lissencephaly. It is a place that I can go anytime I want or need to to connect with other parents going through many of the same challenges we go through with Elle. Many of the families also maintain blogs and have been kind enough to share them through out the group. I will NEVER forget the day we were told that Elle's CAT scan came back "abnormal", then the MRI came back "abnormal" I can't begin to describe the feelings and emotions that raced through my body...The words..."prepare for quality of life" came out of the Dr.s mouth along with other things that to this day I can not let pass through my lips. I hope that other parents that find themselves in that same position can come here and see pictures of Elle and read about all of the things she is doing so that they can see that our children CAN learn and do. If we would have listened to the Dr.s and just brought Elle home and "played" with her I don't think she would be doing some of the things she is doing today. We push her, we have to. It sounds crazy that we push our 15 month old, but sometimes it is the only way she will learn and gain the ability to do something she otherwise would not have been able to do. Lissencephaly is an awful, awful brain disorder and the majority of these children will not crawl or walk or talk and will be severely mentally disabled but if you believe that is all your child will be...then that IS all they will be. We play with Elle, we talk to Elle, we take Elle to the Zoo, we blow bubbles, we go to the park and swing on the swings, we go on play dates, we go shopping... we will take her to Disney World. We will do all the things with her that we would do if she didn't have this brain disorder. We chose to give her an opportunity to learn and see and do. We know that her reaction to some of these experiences will probably not be those of other children, but we still give her the opportunity. Other parents have kids who reach "milestones"...our milestones have been broken down into pebbles but each one is still just as special and exciting.