Tuesday, January 24, 2012

My Therapists

There are so many therapists in my life...that work unpaid.  Mainly, my parents, sister and brother.  These four have listened patiently and loved unconditionally.  They've helped me wade through the deepest, scariest waters.  They've reassured me, telling me I can do this even when I think I can't.  And I am just beyond grateful.  I've realized that I'm not the, "pull up your big girl undies and move on" kind of person.  When the shock and saddness hit, I had to take the time to feel it.  I had to let myself get all the way to the bottom of it and rest there for a while.  And had I not taken that rest, I think I may have exploded.  I needed to call my family and repeat myself a million times and have them tell me it was going to be ok.   And now, after many months of digesting our new reality, the saddness has subsided a bit.  It still washes over me, knocks me down, but it takes less time for me to get back on my feet.

I feel like I've found a way to grieve but still live life.  Be sad about Emmy's struggles but still find joy. There was a time when I wondered if I would ever feel joy again.  It felt like no matter what I was doing a piece of my heart was dark.  Nothing felt complete.  But over time I am getting better at pushing the Rett monster aside and trying to focus on whatever small joy may be presenting itself at the moment.  Rett Syndrome will be there, it doesn't need my immediate attention all the time.

Never have I had to deal with a difficult situation that I wasn't able to push out of my mind, if even for a brief couple of minutes.  There has always been some distance.  But Rett Syndrome is an every day, in your face, kind of struggle.  And to top it off the person who is struggling is someone who owns a piece of your soul.  It has just taken me a while to figure out how to live with this battle and still find joy.  During one of the MANY converstations I've had with my dad throughout this time he told me that living with joy is a choice you make.  Ok, easy to say, harder to do when you're watching your daughter regress.  Then he shared a story with me...a piece of his childhood that I never fully understood.  Throughout his childhood his father had heart attacks year after year after year.  He had a host of medical problems that left him unable to work and in pain.  My grandma worked long, hard hours and my dad went off to school each day.  He said when they returned home they were never quite sure what they'd find.  This went on for years.  As a young boy he had to figure out a way to live life, enjoy life and focus on all the goodness that surrounded him.  This story not only gave me a little insight into what has made my dad, my dad...it gave me strength.

My therapists, whether it's my family, other rett moms, neighbors or friends have sat with me and listened.  It's really remarkable.  They haven't tried to 'fix' things... they haven't offered up one liners like "It's God's plan" and walked away.  They've sat by my side and let me grieve, letting me know it's ok to feel.  Really, what would I do without these people?  I just hope I can be that person for somebody else.  That I can be a good enough friend to just sit by their side and listen.   



  1. What a beautiful post Colleen! I can't even pretend to imagine what you feel each day as you struggle with the reality of living with this ugly disease. My heart aches for you guys, but I am glad to know that you have still been able to feel some joy. Your family sounds like such an amazing support system. Know that you are loved and prayed for regularly!

  2. So wonderful. And you definitely ARE that person for other people. I'm so so glad to have met you and find strength in your goodness each time we connect.

  3. I appreciate the insight your experience brings to my own. It may not feel like much right now, but I think you are truly living. The wealth of human wisdom brought into the world by your little girl's suffering is reflected today in your writing.

    There's so much for us to learn from Emmy. And from you I'm learning that happiness is a point-of-view, a personal choice made by those who are happy, regardless of the suffering encountered by their lives. I think it's a choice to live for others. Thanks for sharing Colleen.

  4. Lovely! Your words so clearly communicate the delicate and tough nature of this craziness. I am so proud of you, for making the choice, to take the time and talk to those who were there for you. You are such a beautiful person, I hope that one day we can meet.