Speaking as an American, only, and only me, the words from the Declaration of Independence have always burned in me. “We hold these truths to be sacred & undeniable; that all men are created equal & independent, that from that equal creation they derive rights inherent & inalienable, among which are the preservation of life, & liberty, & the pursuit of happiness;” … Let’s throw in Freedom of Speech from the Constitution for good measure, too. What great gifts the Founding Fathers gave us-the belief that all life matters, that the poorest is as equal as the richest, that ALL people EVERYWHERE deserve these things, including free speech. And it frankly pisses me off that Rett syndrome has it in for the Declaration of Independence and the Constitution.
So many girls have to fight for Life every day. Their heartbroken parents have to choose to give them a peaceful death or a stretched out painful one, knowing in their hearts that hope is futile. Those poor babies, who never got to run, to truly dance, whose days were filled with difficulty, appointments, seizures, illness, whose every smile, giggle, laugh, sleepy yawn, must be imprinted upon their parents’ hearts to be held for eternity, where was their right to Life?
Liberty- a dream for so many trapped in their own bodies, bound in a wheelchair, dependent upon others for every single meal, recreation and every need. Unable to voice their opinion, unable to be free to choose, made to be a passive traveler through Life, where is Liberty in that equation?
And the Pursuit of Happiness, please. We hardly can pursue happiness most times, as we struggle to just get through the day. And yet there are moments of joy, and we (parents/caregivers) try to bring happiness to our children, but they can hardly get up and go chase it for themselves. They have to be satisfied with what we think they want. And the parents and caregivers, they have dreams they had hoped to pursue-Gone, unanswered, unsought. All because of Rett syndrome.
Freedom of Speech? Why even bother talking about this one. She can’t talk. The way she communicates is not accepted legally as language, her only way of “speaking” is not acknowledged by the powers that be. How worse can it get?
The disabled, in general, have been treated as second class citizens. Thank goodness for the many laws in place to protect them and the incremental advances in understanding, acceptance, but there’s a still long way to go. I want to thank the people behind the scenes, the ones who work endless hours so that our children have a better life. Still, it is bittersweet to me, that the words I live by, that are burned into my character, will never apply to my own child, because Rett syndrome took away those very rights.
But, I know that those things can’t be helped and that I am more than fortunate to live here, where she receives marvelous care and is given opportunity and equipment to live the fullest life possible. But, today, I’m just feeling a bit melancholic. I’m feeling very deeply, today, how much my daughter got gipped. I remember when I joined the Navy, swearing to uphold the Constitution, believing then and now that I would lay down my life for my country and it’s ideals, that I would promote acceptance of different cultures, hope that all those who longed to be Free achieve that dream; I can’t give the things I hold sacred to my own child. I hate you Rett Syndrome, but the arrows of research are headed for your heart. Forget the olive branch, you are on the verge of defeat. You just don’t know it yet.