As I reflect on what Independence Day means to me personally, as an American and a veteran, I can’t help but think what it would mean to Katie and other children with Rett syndrome, their Independence Day.
From the Declaration of Independence:
“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”
Such fundamental rights, denied to Katie and others by the nature of Rett syndrome. Life- so quickly taken away from so many; Liberty- bound to wheelchairs, dependent upon others for every thing, unable to decide a single important factor in their lives; Pursuit of Happiness- not nearly possible. Happiness can be brought to them, put none can seek out their passions.
And from the Bill of Rights-
One of the mainstays of American thought is Freedom of Speech.
How I want this for Katie and others… The freedom TO speak. Such a fundamental thing.
Then there’s the right to assemble.
What I wouldn’t give for our girls and boys just to be able to walk wherever they wanted and meet.
The right to bear arms. (For better or worse, but let’s not get into this one)
I just want our children to be able to USE their arms.
But, I remain grateful there are way smarter people than me commited to giving our children their indepence. I am reminded of a quote and I’ll change it up a bit. Rett syndrome may have won the battle, but we will win the war. Be strong and carry on. One day Rett syndrome will wave the white flag and we will all celebrate the same Indepence Day, the day a cure has come.