Tuesday, September 06, 2011

Picture perfect...

She rode the Special Education bus.  It's not the bus I had ever envisioned her riding to her first day of kindergarten.  Well, at least not before she was born...when all my hopes and dreams for her were of those of typical parents.  And then there was a time in my life that I didn't even know if she would go to school.  So, riding the Special Education bus is...in fact...a huge milestone for her.

My dreams for her have changed.  It was a hard thing to accept.  It still is.  And it is an ever-changing dream.  Because I still don't know what her future holds.  It's not that any parent knows what the future holds for their child.  But when you have a medically complicated child, there is so much more unknown about the future.  Sophie still has daily seizures.  They are affecting her.

At least when she was seizure-free, I kind of knew where she stood and where she was going.  I knew that she would always be developmentally delayed (she did have the majority of her left hemisphere surgically removed).  But she was making tremendous gains.

We have tried a whole list of medications since her latest relapse.  Nothing is working.  Zonegran did help but the positive effects have worn off.  Her seizures are at an all time high since surgery.  

Her speech and language are surprisingly amazing.  She is incredibly social.  And, of course, the most adorable 5 year old girl.  So the combination of those three traits...well...she can pull off appearing typical at times.  And I am SO GRATEFUL for that.  Not for the fact that she can pull off appearing typical but that her speech, language and social skills are at that level.  So I am trying my hardest to enjoy these days.  The days where she is five, six and maybe even seven years old and her immature personality will still seem that of a typical child of that age.  I know I am probably pushing anything past kindergarten since I already see the "hmmm something is not quite right here" look in the eyes of her peers.  Because even though she is incredibly social it's not always appropriately social.  One of the reasons I loved preschool so much is that it was a mix of three, four and five year olds...so being immature was easier to blend in.  I hope that as she grows with the kids in her class that they will just accept her for who she is.

And even though I have accepted who she is, I still do everything I can (when I have the energy) to make sure she lives a well balanced life with just enough therapy but not too much.  It's a fine line.  And Charlie and Elsa definitely help me with that!

And so does my mother-in-law, Debbie.  I can't even begin to list the number of things that she has taught Sophie over the years in such a fun and exciting way.  They have an amazingly special bond and she has always been there for Sophie (and me!).

We are living our lives the best we can.  She tries our patience to the fullest extent almost on a daily basis.  She pushes me over the edge to where I say and do things that I regret so much that it hurts my soul.  And at other times, she can make me so proud that I cry tears of pure joy.

The first two weeks of school have been a huge adjustment...for me, for Sophie, for her teachers.  But we are all beginning to find our way.