Tuesday, October 25, 2011

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Say Cheese......


Channeling Sophia Petrillo, I begin.....

Picture it: Center Moriches, November 2002, in King Kullen's dairy aisle....grocery cart parked right by the eggs...a 3 year old Gabe, fully clothed (including jacket), is strapped into the cart seat. In the red plastic car attachment Will,5 and Carlos 2, sit patiently. I, lulled by the unexpected cooperation of my boys, am confident I have enough time to grab a few dozen eggs. Tempting fate, I walk towards the eggs. In the time it took to pick out an extra 2 dozen eggs, Gabe, still strapped in, was completely naked, Carlos had gotten out of the car and proceeded to pee in a cleaning bucket, and Will was wrestling the first dozen eggs I had put in the cart away from Gab'es grasp. For some reason that year, Gabe who lost every milestone and was just diagnosed with ASD/ADHD, decided he must sit on every egg he could...apparently he had hen tendencies as well, I'm sure that would be a whole other diagnosis.
There I stood, eggs on the floor, on Will, on Gabe, on my face, confused...flee...fight....cocktail....overwhelmed and ready to cry....but I made the conscious choice to laugh instead, and kept moving.....FAST.......

Picture it: Shirley Long Island, July 2004, Petland...After lots of research, reaching out, therapies and biomedical interventions, Gabe was slowly coming around. He was regaining language, and a gluten free/ casein fee/ egg free diet implemented after testing revealed severe food allergies, helped dramatically to subdue his hyper impulsive behaviors, his ability to focus, and his cognitive skills. We began to hope again. Will now 7, Carlos 4 and Gabe 5 ran into Petland to see the animals while I got some food for the dogs. Will kicks up his foot and his shoe flies off lodging itself between the top shelf and the wall. As the attendant and I dealt with our height challenges and our positioning, Gabe grabbed a dog biscuit and began to eat it as a ferret grabs hold of Carlos' finger. The rest is history...I lost my mind....absolutely frantic..."is this a gluten free/ casein free/ egg free biscuit? Can I see the ingredient list? Gluten, wheat, you know gluten??? AARRGGHH WHY!!! WHY!!!! As Gabe gets all dramatic shades of red and I could feel the heat rising to the curvature of the cartilage rounding his ears, I'm panicked. Will tries to pry the ferret off of Carlos' finger and the attendant, frazzled is left completely overwhelmed by yet another bit of my reality that is leaked into the unsuspecting world...He says to Carlos "why didn't you read the sign?" and Carlos cries "because I'm 4 and I can't read yet"....and it hit me hard....I looked around at the scene and started to laugh hard and loud, and it was contagious...again, the choice to laugh ruled, we bandaged Carlos up, left the shoe and ran off to the vitamin store to pick up some activated charcoal for Gabe's monumental infraction. I walked away releasing every last bit of shame and embarrassment I was holding onto, then I popped open the cork and toasted.

Picture it: Center Moriches, October 2011, last Friday to be exact....Gabe is slipping academically and behaviorally as well...All indications point to yeast. The incessant giggling, the perserverating
over looney tune songs, the newly found need to suck on his arm, the biting of his shirt. A long note from his aide confirmed my suspicions that it was hitting him harder than usual...can the onset of puberty be to blame?...Our world never completely flipped right side up again, but as it goes in my life (and because at times I am a slow learner..optimism gets in the way of lessons) his early academic successes this year lulled me into a false sense of confidence that all will be well. I tempted fate and it threw dog biscuits and eggs at me. The road is long, the road to yeast recovery is perpetually longer...and it truly is an isolating and dismissive experience. Just when I was about to surrender to tears, I get his school picture, and it's no longer a choice... laughter explodes....

I do not know what the future holds. I barely know what to make of the present. My definition of "all right", as though directed by Michael Bay, constantly transforms into something new and multifaceted as we go from obstacle to obstacle. Life is resoundingly and pervasively temporary.

Still, despite serious concerns, deep disappointments, and the inevitable questioning of faith, I catch myself making chapels out of stars.....looking for connections from a neural and cellular level to a societal one. Praying that in between the concrete and the abstract love and laughter will continue to accompany us....all the while trying to duct the eggs...and the biscuits....and whatever else is thrown our way......

You need perspective to find the humor in circumstance, you need grace to handle it with kindness and an open mind....But you need good wine, good food, good friends and family to be able to make it through sanely, and keep your spirits and faith up, when you can't see straight anymore.
Thank you my people for uncrossing my eyes.....now to uncross Gabe's........................