You can’t appreciate this now, and you don’t even want to hear it. But somewhere down the road, when life has taught you some of its cruelest lessons, that this is not fair, you don’t deserve it, your child doesn’t deserve it and the pain seems unending – you will become stronger in the broken places from what you have been through, and in the end you will realize that Rett syndrome is not the worst thing that can happen to you. It may not seem like it now. Time has a way of showing us that Rett syndrome is not all burdens; it is full to the brim of wonderful blessings that sweeten the sorrow and add salve to the pain.
That certainly does not take away the many challenges that come with the territory. It doesn't mean that everyone would wish to have a child with Rett syndrome, for sure. I don't mean to romanticize it or minimize their handicaps. Stacie sure has been the depth of my despair and the height of my joy, sometimes in the same day. But, I count my blessings every day when Stacie's smile lights up the room like doodlebugs in turpentine. I wish I could bottle that! She is who she is, a blessing to those who touch her life and choose to see her perfect soul instead of her imperfect body.
For those who say, cut out the "angel crap, my daughter is not an angel," I understand so deeply that some of us have greater challenges than others and this life can be so hard at times. I know that because I talk to you every day. It's a miracle some of you have not run away from home already. Just remember that for every valley, there is a mountain.
We don’t get to decide our fates, but life does give us choices. If we choose to be victims for the rest of our lives, we will be victims. If we choose to be survivors, we can make a meaningful difference for those who follow on our path.
Kathy Hunter
