One of "our" Rett girls has just recently passed away. I have followed her blog and been touched by the words she posts. As she knew her time on this earth was coming to and end, she wrote the following...
When her health decline significantly in February 2012 Karly wrote:
I am writing this in the middle of the night on February 15, 2012. I am so worn out. My body has struggled so much this past year and I haven’t had much of a break where I have felt great.
I can’t tell you how grateful I am for the ways God has used my life to bring understanding and hope to families affected by this terrible disorder of Rett Syndrome. I didn’t have much hope for my life as a little girl, enduring many years of struggle before I could communicate. But communicate I did, and to know that so many people have had their minds changed because of my story has brought great comfort to my final years.
Much of my family have been changed too and I feel glad for their love. Most of all, my deepest love and gratitude goes to my Mom for the life she gave to me through her devotion and continual sacrifices on my behalf. I have shared many times with her and Gregg that the day I die will be the greatest day and that I wish for them to remember that. I am free at last. I am free!!!!! I have so much joy in knowing my struggle will soon be done.
God is my best friend, and He has given me so much comfort to have endured disability and pain. But it’s been hard, so I hope that there will be a cure for the young girls who are coming into this world affected by Rett. I have never forgotten the joy Gregg has brought into my life by marrying my Mom. He has walked through many difficult times with us. My sister Leah has had a life that for many years I thought I wanted, but I’m so glad for the friendship we have had and the ways she has loved me through it all.
I hear my friends weeping and I only wish to say, please do not weep for me. I am so alive now. I have seen the other side and it’s so much more glorious than you can imagine. I am not eloquent. My brain is tired but my heart is content that my time spent in this world has not been in vain; that my music and words will continue to be used by God to change hearts and lives.
I am sending you so much love.