Thursday, September 17, 2009

37. Through the Looking Glass

I feel an especially powerful emotional attachment to other parents who have a child with Down syndrome. It's an instant connection, as if we know secrets that others have no way of sharing. Sort of like the Illuminati. And lately I have been thinking about why, exactly, I feel this way. What are the roots of this unspoken Ds Code? It's something I haven't seen other people explore, and maybe it's time to reveal a few of these hidden passageways so others have a better understanding of our lives. So you other Ds bloggers can think of this post as something that's aimed more at the general public, because I won't be saying anything you don't already know.

The first part of the Ds Code is mental. All parents who are handed this life, no matter the circumstance, are plunged into a period of forced introspection. These are dark days indeed, where everything feels sort of numb and surreal. A Ds diagnosis is one of those BIG moments, for many people it's the most powerful moment they will ever experience. You are forced to reevaluate your life - what it was, what it is, and whatever it will be. You have to make sense of things, and that requires lots and lots of thinking. You have to dig deep and shuffle through some really disturbing thoughts and feelings. It's not a fun process, but it is an enlightening one.

The most painful part of this process for me was evaluating my own past. I wasn't ever the most outgoing guy, or the most popular, or the most handsome, or the most athletic, or the smartest, etc. Like everyone, I cursed my faults and wished I had been blessed just a bit more in every department. And so Ozzie's arrival brought waves of guilt. Guilt for my own shallowness and selfishness. Guilt for the awareness that I could have done so much more with what I had. Guilt for the realization that I had never really appreciated the gifts I was handed by the roll of Fate’s genetic dice.

Ozzie is a constant, glaring reminder that not everyone is as fortunate as I am. Some people, through no fault of their own, have a much harder path to travel. And damn, life was hard enough for me - I can't imagine traveling in Ozzie's footsteps. It’s crushing and overwhelming to imagine walking into my old high school in his shoes. This is a painful truth, and it's a mental revelation that I'm certain is universal among Ds parents. We share a different perspective – an appreciation for things others take for granted, a special empathy for hardship. Until you live it, you can never really understand. You other parents out there, family and friends - you think you can, and I know you try your hardest, but I promise you just can’t understand.

Another key part of the Ds Code is the stares. The ones that are now directed at my family whenever we are out in public. I feel like I’m in a fishbowl. I’m a private guy, even though I’m a blogger. I’m happy to pass right along through life as an invisible man. And that’s impossible now, because everyone, everywhere, takes a second look. And I don’t know what they are thinking, but I can guess. And whatever those strangers are thinking, good or bad, feels like an intrusion. It’s a constant and unending phenomenon, and I know it will only intensify as life goes on. I don’t like it, I didn’t ask for it, and I would gladly give it away if I could. By "it," I don't mean the Ds, I mean being the object of other people's attention.

I now know what it feels like to be a celebrity. To just want so badly to stand in line at the checkout without the person in front of you turning around to talk. I think people feel the need to give extra attention to show how kind they are. They don’t realize that EVERY person in EVERY checkout line gives this extra attention. I appreciate the kindness, but sometimes I just want to buy a pack of socks, anonymously, and go home.

Most people just don’t really understand this phenomenon, but I know all Ds parents do. It’s a strange and powerful thing to have in common with someone.

I’m sure as Ozzie grows older I’ll stumble upon other universal truths to add to this post. If any of you other bloggers have thoughts of your own, please share them in the comments.


Adrienne said...

It is so true those thoughts you have when you first find out-ones you'd rather not admit to but you definitely get the chance to evaluate yourself from the inside out.

Bennett is only 3 months so we don't get the stares yet but I know we will some day and like you said about standing in the check out line- I just wish people could see our kids like any other kid and not really even notice them sometimes. Yes they have DS so get over it!

Great post!

TUC said...

I did a post on people staring at my daughter in Wal-mart. It doesn't bother me much anymore. Mainly because my daughter has changed me so much and my appreciation for her has grown to the point where I don't give a crap what anybody else thinks.

Jill said...

Sometimes, I get the saddest hint of a feeling that those in the checkout line whose eyes linger on my son a bit long, are perhaps mourning a past decision. Others, who readily engage my son with smiles, shiny eyes and conversation are those I think probably know a child or maybe have a family member of their own with Ds or another disability. But the ones that see and don't look away are the ones I am trying to reach; the ones who think they feel sorry for me at first, but realize that I relish every moment of his life. There is no mistaking or faking my affection for him in public, No show-boating or boasting....but I'm damn proud to be his mom.

Monica Crumley said...

What a thought-provoking post. I so agree with what you wrote, but then again, I'm in this big boat with you :-) I used to feel like people were "looking" at John Michael and I used to wonder what they were thinking. I'm so proud of John Michael and today out of the blue at Costco a man who had a typical little girl in his cart said, "Your son is beautiful." He gets it. I hope by our staying positive and hopeful in public, more people will "get it."

Hector and Jennifer Varanini Sanchez said...

Great post! I almost feel like telling the world about Joaquin because I'm so proud of him and so honored to be his parent. He makes everyone happy with his contagious smile and I just LOVE to be in public with him because I want the world to see how happy our family is and how complete we are with Joaquin in our lives.

Anna said...

You would appreciate this, we are awaiting the arrival of newly adopted daughter..... husband went to "big box store" (no advertisement here) Oldest married daughter happened to run into him as an 18 yr old with her mother happened by. Husbands face lit up, he did a double take and grinned from ear to ear "She has Down syndrome!" "Look!!!!" Dear daughter was brought to tears as she saw him transformed by the thing you speak of....... Many at our age are aborting what we are choosing...... So if you see us staring, please forgive us. Weve waited a very long year to bring her home and the excitement causes us to forget our manners. :)

Jasmine said...

I have had some of those feelings too, but my daughter has made me realize so much about myself that the "stares" don't much bother me anymore. Some people don't even notice the Ds. I love babies, so I would probably be one of those people staring at you b/c you have a beautiful boy. :)

Thanks for sharing. I love your honesty!!!

Anonymous said...

WOW, it is so true, the connection that seems to exist when I find someone who has a child w/DS. My daughter is one and I sometimes find myself "looking" for children w/Down Syndrome. None of my friends have a child with a little something extra. I don't have my own blog yet, but have been reading several for a while. Yours being one.....your posts often hit the nail on the head! I will keep reading :) Andrea Lompoc, CA