This is the post that should not exist, because I'm too afraid to write it.
Occasionally, I think about the qualities of life that have great value to me. I value good, functional, beautiful design in all things. I love carefully crafted words. I like to be sucked right into a compelling piece of art. I like great jokes, even really simple ones that make me think about something in a totally new way.
I like beautiful songs. I especially like it when I listen to a great song, over and over, and one day I realize that I haven't ever paid close attention to the words. And then, when I play it again and make a real effort to listen to the lyrics, I realize the words are even more brilliant than the music. That's so cool.
I like amazing new inventions - the simpler and more obvious, the better. People have been thinking about things for so long, all of the really obvious solutions should have already been thunk. So it's really neat when someone invents something as interesting and simple as a bladeless fan (even though Sir James Dyson seems excruciatingly pompous). In all honesty, though, I guess one can argue that nobody really needs a bladeless fan. And I guess Dyson would argue that a bladeless fan isn't so simple (it sort of is, though).
I like to work with brilliant people. I like it when people tell me I'm brilliant. Everyone values brilliance. We like smart, brilliant things of all stripes.
Yes, these are the things I value. These are the things I have always valued. And I wonder, sometimes, where Ozzie fits into all of this. Because it's quite likely that "brilliant" won't be a word that will ever be used to describe Ozzie, or the things he does. It's sad that I have spent so long placing so much value on such a narrow aspect of life. I feel guilty about that. But I'm also excited about all of the new, equally valuable things I am now destined to discover. Things I may never have noticed if Ozzie had not been born.
I think our overvaluing of brilliance may be one of the reasons people like Ozzie often find themselves tucked away in the margins of society. People are too busy valuing the things that, in the end, don't really matter all that much. Things like bladeless fans.
Because for all of the ingenious things Dyson has invented, he has never made anything as valuable as a smile.
Cosy Consensus
7 years ago
24 comments:
This is fantastically honest Dan. and this is something I struggle with too. I know I want to adopt. I know it is likely that it will be a child with special needs. I've never been brave enough to post my thoughts on this, but I have written them down.
I come from such an academic family. I go to a well renowned college. But at the same time, nothing here fills me with joy like working with my campers does.
I think there is room in the definition of brilliance for Ozzie.
Definition I found for brilliance:
1. great brightness; luster: the brilliance of a fine diamond.
2. excellence or distinction; conspicuous talent, mental ability, etc.
3. splendor, elegance, or magnificence: the brilliance of the court of Louis XIV.
4. Optics. that luminance of a body consisting of its saturation and brightness.
I would say Ozzie's smile and essence is brilliant! :)
Did you hear that James Dyson wrote a book?
...
It sucks.
Haha - and I hear he's working on a book about the bladeless fan.
It blows.
My little Oz has changed everything. My new eyes see brilliance in people who I would have never "seen" before. I now take the time to speak and smile and interact with special people who I would never have felt comfortable with until now. Maybe brilliant will not be the word we use when we speak of Ozzie, but I'll bet we say: clever, funny, sweet, loving, adorable, wonderful, gifted, precious, talented - yes, my little Ozzie will be all of those things. He is just a little suprise waiting for all to see, and just maybe he will show us a brilliance of some other sort.
Mom
First, I get it. And I appreciate that this post calls out much of who we are - valuing brilliance (to mean intelligence). And I imagine for many (if not most) parents who initially grieve a Ds diagnosis, some (or much) of what they grieve is the potential for cognitive impairment, intellectual disability, whatever one calls it.
And I do see the "brilliance" that Jen and Ozzie's mom mention in their comments... BUT
I don't know. It's never once crossed my mind that "brilliant" would not be a word that describes Oz, or Sheridan, or Gabby, or Joaquin... and I don't just mean in the spirit of the definition Jen provided. I mean TRULY brilliant. One day, Sheridan might be a brilliant musician or chef. Oz might be a brilliant writer like his dad. John Michael might be brilliant a musician. Joaquin might be a brilliant yoga instructor. All of these take not only talent, elegance, and excellence, but they require brilliant cognitive skills.
Who knows, maybe I'm in denial? I do appreciate your honesty, Dan. Because most people likely will not appreciate our children's brilliance for what it is. They will see only Ds. Only somebody "slow." And I would put money on the fact that the propensity for moderate to severe "mental retardation" is the hardest aspect of Ds with which parents must grapple. I know it was for us. No question about it.
But from where I sit now, I also see the intelligence that we admire in many people with Ds. I don't know, maybe everyone else will say my expectations are too high. It's not that I expect Sheridan to be a brilliant scientist like his mother (if I do say so myself!), but that he'll find his own path and show the world he's really smart at [fill in the blank here].
In the end, Dan, I love this post for it's honesty and for making us take a step back and think about this issue. Obviously, I still value brilliance and perhaps that's why I disagree somewhat - which just means that I am proving your point anyway :)
Hmmm... I think I've gone on too long for just a comment.
By the way, the bladeless fan book joke - brilliant!
I just noticed a grammatical error in my previous comment...I will admit that I am NOT brilliant :)
Lisa, LOVE your perspective and I agree with much of it. I think that the medical profession has it a bit wrong when they categorize children with DS as having mental retardation. With most parents of older children and young adults and with almost every therapist that I've come across, they describe our children as "too smart" and "very stubborn"...it just might "look" like mental retardation to some due to the slower response times or the difficulty in speech or the methods that are used to test IQ that really have no relevence to the way our kids will learn or perform. Our children are EXTREMELY bright...and brilliant!
I too LOVED the fan joke!
To be clear, "Mom" is not Ozzie's mom - that's MY mom posting.
To have a heart and a mind so pure, that is brilliant!
This is how I see my son Joshua.
A Year and a half, you could see right from the beginning the difference. The brilliance inside just shines outside!!!
So I see brilliance runs in your family, Dan... I stand corrected. My post should have referenced Ozzie's grandmother.
Hey Lisa,
I didn't mean to ruffle your feathers with this post, and I'm certainly not trying to undercut Ozzie's potential for great things. I'm simply trying to come to terms with society's lopsided value structure, and I'm allowing for the fact that, in some ways, our children are square pegs trying to fit into round holes. Instead of wishing I could whittle away Ozzie's corners, I'm trying to carve a big, beautiful square hole in the world.
Sorry everyone for the confusion I cause when I sign "Mom". Please understand that as a grandmother, I love my four grandchildren with a passion that is equal to the passion with which I love my children. All of that which affects Dan and Ozzie also affects Ray, Dan's dad, and I right to our souls. If I sound a little possessive, I suppose I am. I love writing to all of you, you are all so wonderful.
Mom
I think ruffled feathers are good every once in a while... keeps me on my toes :)
As for Oz's potential, I know with all my heart you were not trying to undercut his potential. So, in the end, point well taken about society's values, lopsidedness and all. I agree with you there. And that's why I (and many other advocates - including yourself, as is obvious from your blog) work to change the world's perceptions of people with Ds. They shouldn't be hidden in the margins, they shouldn't be invisible, and they shouldn't be forced to change - or prove themselves to be "high functioning" - to be valued.
I'm happy to hold the chisel as you create that big, beautiful square hole.
By the way... to Ozzie's grandmother: My mom has frequently told me that she had no idea that having a grandchild would mean she would love him the same way she loved her own children. Sheridan has touched many people - and he has touched his Nonna's soul in a way none of us could have ever predicted. So, no apologies necessary for my own, personal, confusion. It does, of course, make more sense that somebody signing "mom" on Dan's blog would be Dan's mom :) I'm just thrilled Ozzie has so many amazing people in his life that love him so much, and who do everything they can to advocate on his behalf.
My little guy is wise, sensitive and innocent all at the same time. He experiences all feelings, pointing out problems. He is lined up with who HE IS. He doesn’t walk around with negativity or sarcasm. No low grade misery like the rest of the world. My little guy is wise.
Love to read Ozzie's grandmother words.every.one.of.them.
G
Great post and great comments. I totally agree w/ Jen in terms of looking at brilliance in other ways, not just intellectual. I also agree w/ Lisa in that our little ones some day can be brilliant in an area that interests them. But I also understand your point. I think it's a shift that I've made in this past year or so in seeing a different kind of brilliance emerging from John Michael's soul... his essence as a person. A shining light that goes beyond intellect. Not all intellectual clever people are brilliant. I've known quite a few pompous, arrogant ones in my life and they would be the first to claim their own brilliance. Brilliance is available to everyone, it just depends on how you define the word.
Wow Monica, what a wonderful observation. That's such a nice way to frame the situation. Thanks for your perspective.
Love, love, LOVE Monica's comment!
exceptionally put. thank you for such an honest perspective and for the following comments as well. Each are equally thought provoking in their own right. I agree with that brilliance is how you define the word, nit ots available to everyone.
Great post, Dan. Sorry I didn't get a chance to visit with you on Saturday at the party. If you haven't read "Expecting Adam" it has a lot of what you've expressed in it. The woman that wrote it, Martha Beck, went to Harvard, was doing graduate work, when she got pregnant with her child with DS. Her whole family was very academically oriented. Somewhere in the book, my husband recently reminded me, she said something like, "People don't go to Harvard because they're smart. People go to Harvard because they're afraid they're stupid." There are so many people who need external validation. Ozzie will give you all the validation you need and more. You are blessed.
I like to think that a word like "brilliant" is so much more than just clever. Ozzie may well be brilliant because of his affect on others.
Pearl
p.s. Dan Savage is reprehensible.
p.p.s. I, too, love words; and I really like your writing!
Okay, that's it! I just have to chime in to defend Rudolph!
And to wish everyone and their families a happy, happy holiday- however you celebrate it. I'm so glad I "met" you all this year!
Love from The Carsons
Thanks for capturing what so many of us struggle with. Great discussion too.
When we were expecting our little A, one of the things we were so looking forward to was all the wonderful ways she would surprise us with her intellect. Her brother has been a wonder to watch as he grows and develops. We wanted the same wonderful experience again.
Well, she certainly has been a bundle of surprises from her birth 10 days early, her diagnosis, her wonderful smile and yes brilliant light. This kid is not what we expected. We are discovering she is so much more as she works her magic on us. There is definitely magic there (and I'm a sceptical engineering type). But she is changing us and seeing us and knowing us in a way that no 'typical' kid can do.
This transformation is being passed along as we all connect from around the world and learn and grow together. We can all give each other the strength to keep passing the transformation on to others who don't get to have the direct experience.
Thanks for looking at the hard stuff.
yeah, um, there's nothing that I can say that hasn't already been said. Fantastic post, very true words not only on your part but on everyone else's as well.
I think that we will find things in our children that will be exceptionally brilliant: their sense of humor, their joie de vivre, their capacity for empathy and ability to relate to others, among many other things. And I have no doubts whatsoever that when Ozzie does something that makes your heart soar, for whatever reason, you will have no trouble defining him as brilliant.
Thanks for writing posts that scare you. It's nice to know there's a human behind the words. I am always suspicious of people who only write with sugar-coated positivity. Happy new year! - Jen @ only who i am
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