Sparkles and Fear

She didn’t say a word, and neither did I.

It may have seemed like just a piece of paper, but to me it represented much more. For nearly eighteen years, I had held on to it and kept it safe. And just as I handed it to her, she let it slip away.

Wendell was our first rooster at the farm. He was aggressive and would flap up at us randomly. We loved him, but we were all a bit fearful of him, because he sometimes hurt us. Wendell died suddenly last September; he had not been with us even two years. A few unsettling weeks passed for our vulnerable hens before we got Ben, our new rooster, from a farm in Wisconsin. He fit right in with the flock. He has been as gentle as Wendell was ornery. Not once has he approached any humans with aggressive tendencies. I can fill the feeder with Ben standing right beside me, patiently awaiting the fresh crumble. Still, though, whenever I make my way to the chicken coop, as the flock follows me from behind, my guard is up. I turn around every few steps to make sure Ben is not getting too close or coming at me. I guess I am so programmed from my angry rooster, that I can’t quite let go of the thought.

I think this is a tiny window into the minds of our kids who are hyper vigilant every moment as a function of a traumatic past. The fear, the worry never quite goes away.

Ben is the sweetest, kindest rooster. He stands near the door of the chicken house, eyeing the pie tin filled with warm oatmeal and buckwheat groats, likely wishing that the hens will leave just a bite for him, just this once. He dares not even try to join the others. His first priority is to make sure he guards his flock. But it’s not about Ben. It’s about what we remember, about what happened before. It’s about the fear that is still so raw, that becomes part of who we are.

I know she can do it. She just wants to forget what she can’t remember, but she must remember that she will never forget. She is strong enough, but her eyes must open so she can see.

I love the new fallen snow. It sparkles like glitter across the acres. As I trod over the property to open the coop in the nearly knee deep blanket, the ornamental grasses that surround a nostalgic metal tractor…garden art, in summer…bend slightly under the weight of winter’s latest gift. The colors are bold and definitive, showcasing nature’s artwork, marking the seasons in a new, unexpected way.

My son sent a miniature orchid for my first Mother’s Day at the farm. It was delicate and profuse in its blooms of lilac and pink, striking beauty for my kitchen windowsill. As spring turned to summer, the last blooms had gone. I read about orchids. I fed my plant with fish emulsion. I watered it regularly and saved its place in the window. I gave it a bigger pot. All the while, I wondered if it would ever bloom again. Nearly two years later, almost overnight and to my utter surprise, seven buds have appeared on a single stalk that looked, until days ago, just like the shoots that have come and gone without flowering.

I’m different than I was a couple decades, even a decade ago. There’s fear in having experienced more, in knowing more and less at the same time, but there’s also complacency in knowing that the hope will find me, that there will be something, no matter how small, to let me know that I am still on the trail…even when I have to turn around every so often to make sure the rooster hasn’t turned on me.

I can hear my little boy laughing from the other room. For him, it has taken much more than two years. It has taken twenty-eight medications and most of his young life to find a few moments of stillness, sparkling as they are, in this space of time. I don’t know where this will take him, or what this even means. I know, though, that it’s a better place than anywhere he has been in a very long time. It doesn’t mean we don’t look back, wondering if a torrent is coming from behind. I think we always will.

We had to get a new paper, a new declaration, to replace the one that had slipped away. There’s a painful lot, though, that we can’t replace.

When the snow begins to melt into a messy slush, I look, but I can no longer find the sparkles . That doesn’t mean, though, that they were never there.

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What’s In Your Egg Basket?

Something happened.  Something went wrong, or maybe it didn’t.  Words that interrupted my idle thoughts as I stood at the kitchen sink,  face-to-face with dinner’s aftermath, cannot be taken back.  Even as I feel the blood rush through my legs and the empty space grow in my soul, I find solace in a cupcake.  It’s the last one, hidden in the back corner of the freezer, leftover from a forgotten celebration.  Rich chocolate of the most devilish kind, with a perfectly swirled pink vanilla piped frosting, made extra special with a fairy dusting of sparkling sugar…gone in an instant. The experts would probably call this emotional eating.  Alone on it’s plate, it beckoned, and I ate it.

If I get out to the coop at just the right time, I can get an egg that still feels warm to the touch.  Fresh from it’s laying hen, this egg rides in the cup holder of my car as I take the baby in to town for therapy. It acccompanies me across the road to the mailbox.  I hold it gingerly in my hand as I look around the farm, thinking of the blooms that will pepper the summer’s garden and imagining the tiny herd of goats that might one day entertain us in the pasture.  Everything seems to hold a bit more promise as I am reassured by the blue-green chicken egg that brings so much to me.

It’s an egg.  I could get a dozen eggs for a little more than a dollar at the grocery store.  

After what seemed like two hours but was actually just over ten minutes, I could feel his body melt into mine.  He made his way to the pink chair, my favorite one.  The storm had subsided, and Dan was home by now.  There were no more cupcakes, but I could get my egg basket, and I could see if there were any eggs to gather.  Even if the hens were done laying for the day, I would breathe the peace of the outside air and know that in this moment, I am okay.  We are okay, right now.  Even if I returned to the house with an empty basket, I would know, because of what it represents, that the basket is actually quite full, if not of eggs. 

There might be different things inside the basket on a given day. Pink sparkly cupcakes, my best well worn sweater, the anticipation of my sister’s visit, my special water bottle, the thought of my fairy roses and my Christmas milk punch: these are in my basket.  In it I can also find the way it feels when all is quiet, when I am washing the last plate, when bedtime has blanketed the little ones in a soft hush (at least for a few hours), when I am able to sneak down to the cellar to start my onion seeds in their fresh peat pots, and when the promise of spring is tangible in the form of garden catalogs that have begun to arrive two-a-day by mail.

To me, it’s much more than just an egg.

There are people, many people, in my egg basket, which is also full of robust donut shop coffee and baseball.  These people fill me up when I most need them, and even when I don’t know what I need.  One brings me ice cream in the middle of the night, another sends me a message that makes my stomach hurt from laughing, and another came to sit with me and did not mention one word about the cheese that stuck to the bottom of her shoe as she walked through my  kitchen.  

When the questions are bigger than the answers after a quarter century of parenting, when the pancakes burned because I had to step away from the griddle to mediate a fight, when I don’t want to look past today for fear of what I might see, and even when someone has eaten the last secret cupcake, I can go to the chicken coop with my egg basket, and I know that I will feel better for having gone.  Experts might think that this is emotional egg gathering.  Though I am far from an expert, I think it might be.  

I don’t think we can really know what is in someone else’s egg basket, at least not everything, anyway. It’s probably not even an egg.  For our deepest friendships, yes, we sometimes do know some of what the basket holds, or we can do our best to try to figure it out.  And even the thought of someone trying to understand what is inside can be enough to fill it up.

When the bread is baking, when my grown son calls to share his excitement at his new venture, when I take a minute to look at my vintage cookie jars, when my daughter’s eyes flash so brightly that I can nearly feel the warmth of her happiness, when the little boys drive their construction trucks in rare harmony, perched together atop the gravel pile; these are the times that I have enough to share my basket with others.  

I might miss the glory of the Northern Illinois sunset if I don’t hurry out now to close the chicken door for the night.  While I am out there, I will be sure to check for eggs one last time.

Brave

 Ethan is brave every day.  Yesterday, I was brave for him.  I wanted to post the words that I shared with the medical advisory board which voted 8:2 in favor of accepting autism as a condition to recommend to be treated with medical cannabis.
“I am learning more on this parenting journey than I ever expected to learn.  Honestly, I really don’t want to learn all this stuff.  I don’t want to know the side effects of Risperdal or Zyprexa.  I don’t want to have a reason to know them.  I don’t want others to treat my sweet boy with any less dignity than he deserves.  The grip of autism is not selective.  This child is only trying to make sense of his world and his emotional kaleidoscope.  I want him to eat lemon knots; I want him to be able to walk across the train tracks without being gripped by fear; and I want him to enjoy the Christmas lights with the rest of us.  I want him to know that he is a treasure and a great blessing, every single day.

We know that people with autism are often in a state of sensory overload.  Experiences are more intense: louder, scarier, more painful…often intolerable.  I have seen anecdotal studies of children close in age to my son, with similar behaviors, who seemed to get better almost overnight when allowed the chance to have medical cannabis.

With Ethan, there are extraordinary swings of angst, fear, and aggression.  In the other direction, there are flashes of brilliance and uncanny cleverness to outsmart a university scholar on a good day.  The days where the brilliance outweighs the angst, those are the days we relish.  We adore him.  We are exhausted on all of the days, but he has brought to us intangible things that we did not even know we needed.

Ethan, at seven, has been through two psychiatric hospitalizations when the behaviors became too overwhelming.  His therapeutic day school has now called on a behavior analyst to help with his programming.  I learned yesterday at his IEP meeting that my son had more physical restraints during the last calendar year than anyone else at the school.

I’m sorry for everything.  I’m sorry for the railroad tracks, the thunder, the bees, the wind, and for all of the other things that invade your head and stir your fears.

We don’t want him to have to go back to where he is not understood, where nobody sits with him as he falls asleep, and where he is presented with trays of brown things with gravy.  We don’t want to go back to a place where the outcome will be no different than the last time.

Then the moments come, and there is nothing we can do.

My little boy, at seven, has been on at least fifteen different medications.  We have never been sure if any of the medications have had any positive effect, though the negative side effects have certainly presented themselves.  Many children in states with more sensible laws have recovered the ability to function in everyday life by using edible cannabis.  I will never give up trying to help my son.  I feel that it is our ethical responsibility to offer this same opportunity to children in Illinois: the chance at a childhood that is governed by states of calm and joy.

Please offer this chance to my son and to countless others with autism who may not have words to express but who feel so very deeply, every single day. ”

Thanks to yesterday’s vote, we are one step closer.  No matter your thoughts and feelings about this, I want our story to be about standing up for our children, and about coming together to make a difference.  Many thanks to Elliott, my bright star, for being the guiding force.