Schuyler

The day after returning home from the hospital last year, Allen found a blog about a special girl named Schuyler ("Skyler") who has the the same type of PMG as Callie.  It was the first time I saw a picture and read about a child with PMG.  The author of the blog is Schuyler's father.  The date was May 7th and the current entry (http://www.schuylersmonsterblog.com/2010/05/purple-snowflake.html) said "She's a ten year-old girl who wears a bra and wants to experiment with makeup and dances around the living room to Lady Gaga. She argues with her parents; she fake pouts when she wants something and does it for real when she doesn't get it."  I started crying when I read this. It gave me hope that Callie in some ways could lead a typical life.  I needed this hope after just hearing that she may not ever be able to walk or talk.

In the weeks that followed, I became consumed with reading about Schuyler.  I went back and read every entry about her in the blog, found videos of her on YouTube (cried when I saw this one: http://www.youtube.com/watch?v=5IWDvwvbWLA), and read the book her dad Robert Rummel-Hudson wrote called "Schuyler's Monster: A Father's Journey with His Wordless Daughter".  In many ways she is able to live typically, but Schuyler is unable to speak due to her PMG.

When we went to Seattle to see Dr. Dobyns, he asked me if I had "read the book by the father".  I said yes and he said he felt like Callie's case is similar to Schuyler's.  Since then, every time I read about Schuyler, I can not help but think that might be Callie in 10 years.  Sometimes I wish and pray Callie will be as well off as Schuyler.  I think, “If only she can walk/dance/jump around, attend school, and have a couple friends, things will be good, even if she is unable to speak.”  If this is Callie's future, things will be good (just google infantile spasms & polymicrogyria and you will quickly realize that this would be a very fortunate future indeed), but I can't help to think things will also still be so hard.  It breaks my heart to think about never having a verbal conversation with my daughter, especially considering I talk to my own mom most days.  I am sad when I think about how difficult things will most likely be for her socially.  It will still be a very tough road, even if she is blessed enough to have most abilities except for speech and more minor cognitive challenges.  I know my heart is going to break over and over again for her, and this is probably our best case scenario.  In reality, Callie's case may be worse than Schuyler's due to her IS (thankfully Schuyler never had IS and has been seizure free to date), but I will continue to hope for the best and try to keep everything in perspective.  I know things can always be much worse and need to remember there is no way to know what the future holds.  I should not waste energy worrying over something I can not control…easier said than done for me, that’s for sure.