Monday, August 22, 2011

Gut Punched

It was Good Friday.  The day we sat in the neurologists office and heard about Rett Syndrome.  John said he saw my face go pale as I listened to the the doctor tell us the details.  I honestly don't remember what she said but I immediately told myself Emmy doesn't have this.  How could she?  She was making progress, right?  We went home, of course looked it up online and then wham.  Gut punched.  See I've never actually been punched in the gut.  I'm not the fighting type (I'm a non-confrontational pip squeak) but I did play soccer for many years when I was younger.  And there were a handful of times when a ball hit my stomach at full speed and knocked the wind out of me.  That feeling you get when you're on the ground, trying to catch your breath, that is how I felt on this Friday night.  I didn't have to wait until diagnosis day to know this is what Emmy was facing.  I then went into shock and panic mode.  I began reading EVERYTHING I could to help me understand this disease.  And I have to say the most valuable information I found was not on medical sites, it was on blogs.  Blogs that women had started to share their family's journey with Rett Syndrome.  I began devouring these blogs every free moment I had.  They helped me understand the different severity levels and what daily life might be like living with this craziness.  They helped me connect with others who were facing my same reality.  But  most of all they  helped me understand that LIFE GOES ON.  These people were still living and breathing and walking.  They were going on vacations, having more children and seemingly still enjoying life.  This gave me such hope.  I decided that when we got our official diagnosis I would start a blog so here I am.  I am not necessarily a picture taker, a techy or somebody who is good at recording the ins and outs of our lives but if I can help one newly diagnosed family in ANY way, then this is worth it.  There were many dark days when total strangers, moms I had met through reading their blogs, helped me like nobody else could have.  In fact, it was another Rett mom who had emailed me after the diagnosis and used the term 'gut punched' to describe the feeling you get when you realize this is real.  And so even though on that Good Friday a part of me died, I am slowly coming back to life.  I know I could not have gotten to this place without these women so I want to say THANK YOU!!!!  Thank you for sharing your struggles and your triumphs...your beautiful daughters with others.


  1. I can't even imagine what an emotional journey this has been for all of you. I'm so glad you are sharing your story with others- Lots of love

  2. hooray for blogs! so glad you found mine and that we can connect. i feel blessed that you're now a part of my life.

  3. I am so excited to see you start a blog Colleen! Life does go on even though sometimes it is hard and ugly, thank you for sharing yours with all of us out there in the blogoshpere. I am so proud of you!