Monday, July 27, 2009

My world

William's speech therapy session actually ended on time today because he fell into a deep peaceful sleep. It may have been his way of saying, " all done everyone can leave now." It was that time of day that I feel sluggish so I made myself a cup of coffee and settled down with my computer. Imagine that! My twins were actually napping at the same time and the house was wonderfully quiet. Ahhhh, perfect....but what did I proceed to do with such cherished time? Research normal and abnormal brain development, look at CT and MRI images, and charts of brain anatomy.   Followed by all of William's neurology reports which I have read at least a half dozen times already. One line from his report reads like this,  " his (William's) MRI is impressive in lack of brain matter. He does however have a strip of cerebral cortex."  Well yippity skippity, a strip of cerebral cortex!! I hate the use of the word impressive here. I made a mental note to once again have the Neurologist explain in further detail " impressive lack of brain tissue." Also to ask how much of the occipital lobe is smooth which probably is resulting in his cortical vision impairment. So painful to read!!
Reading these reports and viewing such brain images I feel that I am in a different world being a mother to a child with a severe neurological condition.  A world that I did not choose to be in. I chose to be a mother which I love. I love William a tremendous amount.  So much that I notice every new freckle on his smooth face. So much that I can feel my chest constrict with fear of loss; that I am crumbling while trying to gain control.  Perhaps that is my motivation to re-read awful reports and research brain feel in control. Knowledge is power, right? Why then do I feel so afraid for his future that I can not yet know. 

Tomorrow if I am lucky enough to have another quiet sacred and few hours I think I will settle down with my mystery novel and escape.......


  1. I think the mystery novel is a good idea! :)

  2. I hate those clinical reports. Couldn't doctors learn to write in a less clinical matter? I mean...couldn't William's report read "While his MRI is impressive in lack of brain matter, his hearing is quite accute and his sweet personality is his dominant feature. He has a wonderful bond with his sister and his parents are supportive and ready to adapt to his needs." That's how his report should read. :)

  3. Although, I am appalled by the language in that report, sadly I am not surprised. The more "doctors" I meet in our journey, the more I realize that they are mostly antisocial nerds who view people as a form of science to be fixed, explored, and researched.
    Those of us who live in a world of emotion, realize people are much more than their bodies, they are their personalities, their expressions, their love. William is an amazing person. You are an amazing mother to him, and you continue to demonstrate you strength, love and courage as you walk this path.
    Just remember, doctors are not all they are cracked up to be, they can't even explain why we get the hiccups!

  4. You really nailed it when you said you feel your chest constrict with fear of loss. Ain't that the truth... I also spend a lot of time researching and looking at graphs/reports over and over.

    I'm glad to have found your blog - I look forward to following your family and your sweet little ones!