Wednesday, April 16, 2014

What I want you to see

We're in California now, having completed our check in with our UCLA research study doc yesterday.  The sun is shining and we have a tiny pleasant apartment where the back gate opens to what Griffin described as a scene akin to the one in the Wizard of Oz  where everything blossoms into a world of color. Just beyond lies the romping doggy beach we love.
                                    
I could, and I swear I will, let it all go and be here in the moment.  But for now I'm stuck on the experience of being with Ces in the world.  We had to traverse JFK airport and accomodate a very tight fit on the airplane with Walden at our feet for six hours.  No one even knew Walden was there until he briefly occupied my seat when I crawled over the kind woman next to us to use the bathroom.  It was the moment I returned to my seat, and the many like it in the airport that are stuck in my head.  It's the assessment Ces attracts from others.  Sure, Walden is a dead giveaway. Service dog? What's wrong with that kid?  But even without Walden, Cesare gets the same stares or more politely, glances. They see Cesare with his mouth often open, and one slightly droopy eye but miss his beautiful face.  He slumps forward, the weight of four anti epileptic drugs heavy on his shoulders.  What else do others see when they look at him? What is it that makes them stare? What do they conclude? There is judgment in their eyes. Cesare doesn't see others size him up.  I can't not see it.  When I watch others watch him, I hear a door slam shut.  They've dismissed him.  I can't make others see Ces the way I see him.  And I shouldn't care.  But I do.  And so I watch the watchers and hope their eyes meet mine.  When they do I shoot them fire and I don't let go until they have to turn away from the heat.  

                                       





7 comments:

  1. That is heart-breaking and totally understandable. I truly wish you the peace to just say f*** it for just a short while on your trip. For what it is worth, in every pic you have posted of your son, he always looked to me like a healthy, happy teenage boy.

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  2. I agree with Beth but would say f*** judgemental losers! Ces is adorable. Okay so is Grif. Enjoy Oz! Try to close your eyes and memorize the exact smell of the beach as the waves break, your doggies romp and your boys laugh in the sea spray.

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  3. Hi, I am trying to post -again-, this time from my computer, as I believe my tablet doesn't let me post.

    Anyway, I think your son looks happy and is very handsome, I have always thought that. Rest assure that not everyone is judgmental and ignorant, sometimes curiosity takes the best out of people.

    I hope that you find answers in your trip to colorado. Please post an update. I am hopeful that this may be the answer for your family and many others.

    Ps/ I have actually gotten in to verbal altercations with people and even teens when the fire was too much just to shoot it with my eyes. I had and even though my son has been mortified, I have no regrets. I simply have stated that no one is immune to being sick and that they should be grateful that it is not them and that perhaps their mother did a poor job raising such rude brats!!!!!!!! You should have seen their faces hahah!!! Totally worth it.
    Best wishes,

    P (otherwise known as mereloaded)

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    Replies
    1. Hi Paola, you did it, it posted! I admire your courage. I can absolutely imagine being moved to growl "What are you looking at?". I'm sure my son is glad I haven't, yet. Are you familiar with friends Gina and Patty's website and books called "Shut up about your perfect kid?". I think you could relate. http://www.shutupabout.com/

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  4. Loved the website. funny too! I also enjoyed the huffngton post link you shared, it is spot on!

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