“If you could cure…”
I stopped him, “That is not a fair question.”
The scientist raised his eyebrows.
How can you speak of “cure” when the issue in discussion is in every cell of his body?
What does it feel like to have 47 chromosomes? I wonder. Does it feel different than 46?
Every cell in our body contains our chromosomal makeup. Cells constantly regenerate, each set (or triplicate) of chromosomes generating and regenerating as well. Sometimes cells in the typical population, triplicate the 21st chromosome, here and there. But it’s scant – other cells adjust and readjust, and the moment passes. Do we even notice? Do we feel a shift? I listen and read of the science, I’m fascinated and often baffled.
The thing is, the more I’ve learned, the less I can imagine separating “Down syndrome” and the person. About my son, especially. The more I know of the science of the body, cells, and make-up of the human being, the more I cannot see Down syndrome as anything “outside”
– Marcus is Marcus is Marcus –
His body, his mind, his…self, are one package and therefore I cannot separate one part of his chromosomal makeup out of every cell in his body. I just can’t comprehend how that is possible.
I guess the answer is simpler than I thought, then.
I do not want to cure Marcus of himself.
This is my 5 minutes on the prompt today “This Body…” which I changed to (t) His body, as is my prerogative.
I’ll tell you what I do wish was cured – Alzheimer’s disease. I will do everything I can to help Marcus’ heart to be/stay strong. Diabetes (in every age/form) can go straight to hell. Fuck Cancer in all its forms. And yes, not a cure so much but, Marcus has requested a magic pill that would allow him to speak more clearly. And then there are the social issues, safety concerns, and lack of empathy in the world. If there were a cure for that…
Finish the Sentence Friday is a link-up where writers and bloggers come together to share their themselves with a particular prompt (different formats each week of the month). If you’d like to participate, join our Facebook group. Go Here or Here to link up!
And lastly- here’s a thing I tried:
It is often considered a position of honor, the first comment. Sometimes after I read a post, I know where I am going with a comment… the ‘comment link’, I call it, the view or perspective or fact that I can identify with. Other times I read a post and say, ‘damn!’ Those are the times I find other (previous) comments helpful. This is one of those posts. The power in the very few words (for a post) jumps off the page. But it is not simply emotion (to my reading) it is a… significance, it makes the ‘subject’ of the post so much more real. I’m one of those people, late to the writing thing, that often has difficulty conveying genuine emotion to readers. When I read a post such as yours today, a part of me marvels at the ability to convey so much love (and frustration) in so few words. ‘one take’ words no less!
Thank you Dear. After thinking and stewing on these things a – lot – I was probably only going to ever get it out if there was a free write to get my emotion out. And also- thank you for making comments so many times. Comments are the breadcrumbs that keep us going to the next set of words, eh?
Love you. Love this. It’s so true right? In earlier days, I wondered whether I would “fix” Tucker if I could. I came to the decision that the “him” that I adore so much is him, the way he is. He doesn’t have extra chromosomes, but there ARE times when I wished he were more typical… but then, I don’t. I want the sweetness of him as he is. I want the way he is with me as he is. Do I hate the world for making him feel badly about his speech/social skills/abilities/etc.etc.etc.? Yes. But I’d rather have him as him. When I try to imagine him without his delays, he’d become somebody I don’t know. And I love this one I know. I ramble. You already know. Glad you wrote, and linked this. xoxo
Yes Dear – I know, you know, <3 - Ms
Yes there’s no way that we could take away a chromosome if it were even possible and fix down sydrome. I love Marcus is Marcus is Marcus, there is no loss of life in his being. I agree, fix Alzheimer’s, and cancer etc.
So many have asked me if a cure was available for autism, would I cure Eliza. My answer is no. She is who she is and autism is just one of her ingredients. It’s also not my decision, it’s hers. There are other things I’d love to cure, Cancer in particular. Love your piece. Marcus is amazing.
Yes to that and Thank you – Mardra