Sunsets and Storms

“How long do you think I’ll last? I mean, when do you think I am going to die?”

Ethan’s questions still sometimes catch me a bit off guard. I am not sure I ever give him answers that satisfy or even make sense to him.

I had to come up with something. “Well, Grampa is eighty. You could live a very long time.”

“Grampa eats fruits. If you eat a lot of fruits and healthy stuff, then you can live a long time. I don’t eat that many fruits.” He went back to what he had been doing before. The conversation was enough for him, though to me, rather unsettling and incomplete.

There are times when nothing makes sense…to anyone…at all.

I had hoped to hide from my embattled reality for at least three minutes. Just as I turned the lock to the bathroom door, I heard the skip that is unmistakably Aaron, embodied, bounding upstairs.

“Mom? Are you up here?”

He knew where I was; there was no hiding, no refuge to be sought. I was glad that he spoke first, before my annoyed retort for befallen peace sent him away, certainly without skipping this time.

“Mom? It’s a beautiful sunset. You should come see.”

That’s why he had come upstairs. That’s what he wanted to tell me: that the sunset was beautiful. He wanted me to see.

My little son knew that tonight’s fleeting gift of God’s creation would be worth more to me than a little time alone in the bathroom.

My birthday is coming up again. I am keenly aware that I am at the brink of the manifestation of the sunset of my life. While the future had once been something to envision from a great distance, that tide has now caught up to me, and my steps are not defined as I had expected that they might be. They melt; they disappear into a million grains of sand, indiscernible from the tracks of those who have gone before.

I wonder how my son, my child who views the world through a black and white lens, would make sense of the loss of a child. I wonder how anyone would.

The behavior specialist from Ethan’s school called last week. After analyzing the data from the past year, she was pleased to report that though the incidences of physical holds had increased, the overall challenges with his behavior had decreased to the point where he would be dismissed from her caseload. This, for us, is a type of victory.

Are the days that follow the second half of what has already happened, or is it a new start? Is it the end of the beginning, or will there be an entirely new purpose?

Olive Chickens (thanks, Elliott, for the middle name) does not appear to know where she is going in a given moment. Her feathers hide her eyes, and one wonders how well she can even see. Somehow, though, she finds her way home, or close to it, at night. Once, though, she almost didn’t.

I had taken Ethan to the specialist out of town. The driving rain made travel hard, and it was well after dark when we finally returned to the farm. Dan and Aaron had locked the other chickens down for the night, but Olive, who had been with us for just a handful of days, was nowhere to be found. She was certainly scared, cold, wet, and tired, if she had even been spared. After what seemed an eternity in the darkness of the still-stormy evening, I heard her unmistakable peep. I was a child on Christmas morning: Olive Chickens had wedged herself in a less-than-two-inch wide space between the coop and the run. She was trying to get home. She was scared, but she was okay. With the help of a rake and some urgent prayers, she was soon safely perched with her coop mates.

The boys were waiting for me when I finally made it inside. Ethan was first to approach. “Mom, you really care about that weird chicken.”

If only he knew.

So when the storms are inside, coming from a now medium-sized boy, and they overtake an hour or a day, I remember that we have come far. I remember that the beautiful sunsets had been further between. I only hope that we won’t run out of time before we make it home.

When I am gone, when my days are done, I hope that someone will be glad that he is alive, that someone will search for him when he is lost in the storm.

Here’s to eating lots of fruits, always finding our chickens amid the thunder and lightning, and never, ever missing out on a beautiful sunset.

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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.