February first. Baby with a secret

Twelve years ago today, during an ice storm our daughter Kylie Eden was born. I'd never seen a human so perfect.  (I say that every time) Kylie is baby number four for me but first for my husband.  Our other children were in awe of her tiny features and spent almost as much time staring at her as we did. Unfortunately, this blog is not about how gorgeous she is. You see, Kylie had a secret birth defect that we would not discover for nearly six months later.

      As the months passed we barely took note of tiny clues she gave us that something wasn't quite right.  Kylie was taking a long time getting over her startle reflex and still required swaddling at four months. She wasn't reaching out for toys and peoples hair like one would expect for her age and was showing no signs of sitting up even as month five came around.   "Should she still be crossing her eyes?"  someone asked. ~ How offended I was!  Then there was a weird thing she did with her hands.  They were fisted as usual , but turned away from her body. The only time I'd seen that was in someone with special needs. Hmmm,.... filed under weird, again. My best answer for all of these oddities were that she is lazy probably because she is doted on by everyone. Looking back I feel so stupid. But that my friends is denial. We as parents (and humans) probably do it everyday.

   In July, when Kylie was 5 and a half months old she had a tiny seizure. I will try not to bore you with the details because if you're anything like me you will skip over them to get to the useful part.  So in short she was diagnosed with Lissencephally which is Latin for smooth brain.  The Dr' s are careful not to flood you with too much information so anything you want to know has to be asked directly. I was getting the idea that Kylie wasn't going to be able to do a lot. That I could deal with. My only question really then was "will this effect her lifespan?" ...... "Yes." .....That was all I could hear. I was done. I went into a mode that has served me well in the past, I just shut down that part of my brain and asked for our discharge papers. 

         The next few days consisted of just mustering up enough energy just to achieve the daily task of eating and bathing, not much sleeping. All of our energy was spent on crying and hovering over Kylie,documenting her every move.  My husband and friend were looking up information on the internet and reporting to me the gloom and doom they had found.  Very little of it proved accurate in our case, as Lissencephally varies depending on the size of effected area of brain.  Which brings me to the reason for this blog.  I plan to document useful information that I have learned on the way.  Not just applicable for Lissencephally patients, but for all who have profound disabilities. It is on their behalf I write to you, their caregivers.

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