Sunday, August 11, 2013

Peanut butter, hair cuts, and a cure for Down syndrome.

He smells of peanut butter & speaks a language that only he understands.  We call it dolphin.  He's very social...when he's in just the right mood, with the right amount of people around, the volume of his surroundings has to be to his pleasing, and the chaos...well that has to be to his liking as well.  Otherwise, he's out.  He is 5 and loves nothing more than to be naked.  I made a chore chart that only says "pee pee in the potty", 7 times a day, 7 days a week.  I'm willing to pay .25 for each chore.  Shoot...who am I kidding, I would pay much more but shh...that's our secret.  He has perfect flip flop feet, but refuses to wear flip flops.  Did I mention he smells of peanut butter?

I'm feeling very random & conflicted this afternoon.  My day started off pretty normal.  The boy woke me up at about 5:30 am (his norm), so I flipped on Toy Story & put the pillow over my head.  He crawled around on top of me hooting & hollering as Woody went about his shenanigans. I'm over it, let’s get up.  We had our usual breakfast of eggs laced with Prevacid, bananas, and a Nutrigrain bar.  I am well aware he's done based on the flinging of left over banana that just hit me in the head.  Speaking of heads...let's shave his!!  Dad is home (back up is required)...let's get this done.  My boy does not enjoy the cutting of the hair.  But when the screaming is done, he's so incredibly handsome.  Nothing super exciting happened today...same ol' same ol' stuff.  Until I sat down at the computer to see what's happening in the world (according to MSN).  And I came across this...

I'm not even sure where to start.  Do I believe there is or ever will be a "cure" for Down syndrome?  I don't think so.  Do I hope that someday they (scientist) find a way to help give people with Down syndrome a higher quality of life?  Absolutely.  As I do for the rest of mankind.  This article talks about the possibility of helping/eliminating heart defects, Alzheimer’s disease, childhood Leukemia... but with what risks?  Jake had heart issues as an infant, but had open heart surgery & now is a little superman.  We are good there.  But Alzheimer’s...that scares me.  So to say they may have a "cure" for alzheimer’s in people with Down syndrome...I say bring on the studies.    One of my favorite parts of this article, "If Down syndrome were completely cured, the world would lose something from the absence of that culture," said Skotko, who has a sister with the condition. "There is something positive that people with Down syndrome contribute to the world."


He smells of peanut butter, I can't understand him, and he tends to be fussy around people he doesn't know, we spend a lot of money on diapers (at 5 years old), and he flings food at me...but the absence of all of that, in my world...would be unimaginable.