Friday, October 19, 2012

What a difference a year makes

Before we had our diagnosis but were pretty certain we were dealing with Rett Syndrome I was kind of a basketcase.  I knew I wasn't ready to meet any other girls or families but needed to talk to somebody who knew what we were going through.  I came across a blog written by an amazingly wonderful Rett mom, Maren.  Her posts were positive but realistic.  She had a way of conveying how the disease had affected their lives without making the whole situation seem so doomsday.  I don't know how I initially got in contact with her (that time in my life is blurry at best) but we eventually started emailing.  I sent her some pretty pathetic emails.  I mean really, really sad emails.  I really held nothing back which is funny because she was a total stranger.  She helped me through some very difficult days and for that I was so grateful.

A little over a year ago, Maren, her husband Ryan and their four year old daughter Leah were moving across the country and stopped by our house for the night on their way.  We had just gotten our diagnosis a month prior.  At that point Emmy was about to turn three and other than being non verbal, it was pretty difficult to tell she had Rett Syndrome.  She didn't hand mouth or do any repetitive movements with her hands and her walking was still fairly steady.  She had just started opening and releasing her hands in a way that I could tell she was unable to control.  Last summer she spent a lot of time just looking at her hands and then looking at me trying to figure out what was going on.  When I think back on this time I lose my breath for a moment.  There are really no words to desribe watching your daughter struggle in this way...knowing that it was only a matter of time before the skills she had gained would vanish.

And even though I had no idea how this disease would progress, I knew meeting Leah would give me a little window into what the future would look like for Emmy.  What I didn't really expect was how helpful it would be just to watch Maren and Ryan interact with Leah.  Here is this young, adorable couple with an absolutely beautiful little girl just living life.  They weren't letting Leah's challenges stop them and this was such an important insight for John and I at the time.       

So much has changed in a year.

These picture was taken late last summer...

I remember Emmy dancing.  She was moving her arms and legs in a way she's unable to do now.  Her walking was much steadier and she didn't tire as quickly.  At this point, we were losing skills each day.  This was I believe somewhere near the beginning of her VERY slow, VERY long regression.  I don't have the heart to look back at videos taken at this time yet.  I am always so impressed with other families who put together videos of their daughters story.  I am just now able to start looking back at Emmy's picture book. 

Emmy has lost a lot over the year but she hasn't lost her will.  She is starting to understand her limiations better and is working hard to communicate.  I am so proud of this girl.  She is not the only one that has changed over the course of the year.  As a family we have evolved.  I don't really know how else to describe it.  We are stronger, more patient, more understanding, more aware than we were.  We are better because of our Emmy.



  1. Colleen, I couldn't agree more about your sentinments of the Layton family, they are some of the best people out there and I am so glad that there journey led them across your path. I hate that your last year has been so long but am proud of you for expanding and loving the way that you have in the midst of it all. Some day I will make it back to see you, how I long to spend more time with you and to meet the amazing, world changing Emmy.

  2. I'm in tears, obviously. You have no idea how much meeting you and your family actually helped us. It was so wonderful to see Ava interact with her and the love that they shared. As the clock ticks for Ryan's MBA school graduation, I am afraid and excited we might be joining you in the midwest. I'll keep you updated. :)

  3. Emmy makes you better parents...but Emmy is so lucky to have you as her family!