…where a brave and beautiful bunch gather every week to find out what comes out when we all spend five minutes writing on the same topic and then sharing ‘em over here.
First she was small and it was big. At least bigger than not existing. This hole, this tiny absense of tissue that once spanned a mere 2-3 mm of space in the center of her heart shouldn’t have existed. A VSD. A tiny missing piece at the very core of her.
That’s what people see and assume when they see her, when they hear about her, when they read about her- that’s she is missing something. Both in her genetic make-up and in her understanding of the world.
But that’s not true. That’s not what Down syndrome is or what it means. She isn’t missing part of her brain, her chromosomes, her understanding, herself. She’s all there and a little bit extra. A little extra genetic material on that infamous Twenty-first chromosome. How it impacts her, how we understand that it impacts her, that is changing. We used to think people like her shouldn’t exist. They should be locked away. Given away. Terminated. An example of an error on the part of nature and God. Slowly, person by person the world is coming to understand that, that “fact” just isn’t the case. Her existence is not imcompatable with life. It’s quite the opposite. This dear girl, she’s a person, a human being who thinks, learns, understands and acts with choice and free will just as any other human being. She just needs to do it in a little different fashion than other people. In her own way In small ways she is different, yes. But in the big ways, when we take the time to get to know her we find out that those differences don’t have to be big. It’s us that choose to see her that way, not her. That when she and people like her are given the same care and attention that any other human would, that they have the same potential to grow.
To grow like the tissue in the center of her heart has over the last 4 years. Now, that absense of tissue, that space, it’s miniscule. About the width of two hairs according to the doctor as of yesterday.
“She has no restrictions. Don’t limit her.” is our new prognosis.
I have to agree. We won’t, in big ways and small.
Now the differences are small, now that she’s big.