A few days ago, I got to meet Bennett (or Benney as Brandon likes to call him...hope you don't mind Ken...and he keeps singing BaBaBaBennie and the Jets) and his parent's Ken and Jen. The IS family is a close knit community. I stumbled across his blog page (Blogzilly) from a link on Danielle's blog page (Dear Trevor). I was immediately drawn to his blog. They are new to the seizure world. Their son was diagnosed with Infantile Spasms about 3 months ago.
I felt connected to this family. Their pain so new and so raw...brought me back three years ago when Sophie was first diagnosed. My heart ached for them. I wanted to take away their pain. Ken is so incredibly open and honest with his feelings. He has the ability to pour his heart out and describe them so well with words (something I wish I could do). He tells it like it is...no sugar coating.
Bennett is the most adorable little boy. He was napping when we went to visit. Sleeping peacefully in the metal hospital crib with his head covered with leads and all wrapped up in gauze. After awhile, he woke up with a smile. Such a precious smile...melted my heart. Makes me long to meet my little boy and hope that he is half as cute as Bennett.
There is just something about meeting another IS family. Can't describe it. I am not the touchy, feely, huggy kind of person when it comes to people outside my immediate family but I wanted to wrap my arms around them and tell them that is was going to be okay. Okay in our world can take on so many different meanings but I just feel deep down in my heart that Bennett is going to beat the odds. I hold on to that hope for this family because I know how easy it is to lose it.
Bennett is here for the standard testing...24 hour video EEG, PET scan and the much awaited appointment with Dr. Chugani to see if he is a surgical candidate. I am sure they are on the edge of their seats, trying to stay calm, waiting to see what the future holds for their son. So please keep them in your thoughts and prayers.