Friday, March 9, 2012

What Is It Like?

Last night I had a dream that I had lissencephaly.  I was on a field trip with my class full of special needs children to a museum full of adaptive play areas (man, I wish I could find one of those!).  My mom was with me, but there was no husband or children, because, of course, I would not have those people if I were as neurologically impaired as Anabelle.

What I remember very clearly is looking around at my fellow students and thinking, "This is wrong.  I don't belong here.  I am not like them."  I remember my mind being clear, but my body not responding.  And then, all of a sudden, my mind would get jumbled and I would be disoriented and confused, but not confused enough to not realize, "Yes, I DO belong here."


I have no idea what it is like in my daughter's head.  My friends and I often joke that the cure to cancer or the solution to the Ramsey theory of mathematics is trapped in our childrens' minds, but their bodies won't let it out.  I have no idea how much of what I see with Anabelle is a lack of understanding vs. a lack of communication.  Does she ever have those moments of complete panic that I felt in my dream, when I realized I was trapped in my own body?  I seriously hope not.  Does she see anything in her world clearly, or is it all a swirl of information in her head?  Can she sort and filter information: this is a smell, this is a sound, this is a touch?  Or is it all a jumble of sensory input and she has no way to identify the source?  I have no idea

These are the questions that plague me and keep me up at night.  Those of you who do not have non-communicative children cannot possible understand what it is like to have to guess at everything your child is thinking or feeling.  Most of the time we can convince ourselves that it is a hidden blessing: that they will never know the fear of war and famine, the hurt from teasing or a broken heart, the grief of losing a loved one.  But then there are moments like my dream, when the panic that maybe they DO know more than we realize comes out, and we fear that they may, in fact, be afraid or in pain or sad, and we have no idea, and are not offering them comfort.  It is a terrifying, helpless feeling.

There is no solution to this.  Was there any accuracy to my dream?  I'll never know.  It was my cognizant mind trying to interpret her relatively UNcognizant mind.  And while I pray that she is able to glean as much as she can from her life, I also pray that all of it is good.  That if she is going to be as impaired as she is, that it at least comes with relief that she does not suffer the indignities of life.  I will never know, and so I can only hope.


  1. "For he who has health has hope, and he who has hope, has everything....Owen Arthur

  2. There is always someone to hold Anabelle, to stroke her face, talk to her, to let her know she is not alone. She is loved with a fierce passion that wills itself to get to the core of her being. If she can KNOW anything, I choose to believe that she can know how much she is loved.

  3. Kate - Catching up on your blog for the first time in quite awhile. Simply put,I love it. Sending hugs across the miles, Jill