I sit here this morning filled with hope and joy. We spoke with my new friend Tammy’s mother yesterday. This world feels a little less unfriendly because of the connnections we have made with each other.
To put our experiences into words is something that has overwhelmed us, yet our hearts are very much the same. Our lives have been lived very far apart. Yet we have been brought together through the use of technology. To find three other women who have Rett Syndrome and can communicate, and who have struggled to be seen and understood, in bodies that have betrayed their intellgience, gives me hope that the girls now being diagnosed will have a better life.
I can only credit God with the miracle of us finding each other. It could never have happened if it was us. You see, to live in a silent body, is to be unseen, only noticed for the wrong reasons. If our drooling, our movements uncontrolled by us, or hand flapping or breatholding are the only things seen by people, then we are isolated. I want to give all the Moms of my three friends with Rett who can communicate, an enormous hug. Because my body won’t allow me to do it while here on earth, I will be waiting for you in heaven , to give it to you then. You have believed in us when the professionals and friends and family have not. You have defied the beliefs of others and in doing so, have given us a voice. We have found each other and while all of us may not be ready to share in our own words yet, we are united in our experiences. It confirms for all of us it is Rett Syndrome which has taken over our bodies, not who we are as people.
I have had more exposure than my three other friends because of my blogpage, and I have found great encouragement in how much it has helped others. I hope you hug those you love today.